We'll Be Married in Fremantle: Alzheimer's Disease and the Everyday Act of Storying

When an old man with Alzheimer’s Disease fell in love with a nurse who he seemed to confuse with his fiancée of long ago, a sharing of stories enriched both their lives. The relationship enlivened ‘Joe’ and challenged the nurse, author Julie Goyder, to rethink her understanding of ‘people like Joe’. Their ‘storying’ moved well beyond protocol or politeness, evolving into a friendship that not only transformed the author’s attitudes to how people with Alzheimer’s Disease might be treated within institutions and the community, but made her aware of the vital importance the act of storytelling has for us all. Weaving contemporary theory, biography, autobiography, anecdote — and giving space to the often dismissed, rarely told, stories of sufferers of Alzheimer’s Disease — We’ll Be Married in Fremantle is a timely, articulate and moving contribution to our understanding of ‘the everyday act of storying’ and the power of narrative in human relationships.

Julie Goyder worked as a nurse before completing a PhD at Curtin University of Technology. She now teaches creative writing at the Bunbury Campus of Edith Cowan University. She has published short stories in Australian literary journals. We’ll Be Married in Fremantle is her first book.

Alzheimer’s Disease and the Everyday Act of Storying

FREMANTLE ARTS CENTRE PRESS

First published 2001 by

FREMANTLE ARTS CENTRE PRESS 25 Quarry Street, Fremantle (POBox 158, North Fremantle 6159) Western Australia. www.facp.iinet.net.au Copyright © Julie Goyder, 2001. This book is copyright. Apart from any fair dealing for the purpose of private study, research, criticism or review, as permitted under the Copyright Act, no part may be reproduced by any process without written permission. Enquiries should be made to the publisher. Consultant Editor Wendy Jenkins. Production Coordinator Cate Sutherland. Cover Designer Andrew Allingham. Typeset by Fremantle Arts Centre Press and printed by Success Print. National Library of Australia Cataloguing-in-publication data Goyder, Julie. We’ll be married in Fremantle. ISBN 1 86368 311 9 1. Alzheimer’s Disease - Patients - Care - Popular works. 2. Alzheimer’s Disease - Nursing - Popular works. 3. Interpersonal communication. I. Title. 616.831 The State of Western Australia has made an investment in this project through ArtsWA in association with the Lotteries Commission.

Australia

Council for the Arts

Publication of this title was assisted by the Commonwealth Government through the Australia Council, its arts funding and advisory body. Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the relevant copyright, designs and patents acts, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publisher. eBooks Corporation

To my family

The old woman does not tell the nurse but she has had to reach out to touch the flames upon her wardrobe. The wood is uncharred. Around the bed, too, flames. And last night a hand beside her own. Eyesight failing, and the ghost fires, she stared again … She stares for focus, she will outstare the flames. Focus is difficult now, rainbow. She is betrayed as once in childhood she was mocked by a fractured spectrum. Is this memory? Out loud her voice is a phone-call, close but cupped in. ‘What parts of our brain function to achieve this? I know the flames are hallucination.’ No, she will not disturb the nurses. The flames are visible … Thomas Shapcott, ‘The Elegy Fires’

PROLOGUE

The Joe Story

I first met Joe several years ago, when I began working in a small nursing home in Western Australia. I’d been nursing for about ten years and had looked after a large number of people with Alzheimer’s Disease before meeting Joe, so I didn’t take much notice of him at first. He was just another Alzheimer’s patient sitting in an e a s y c h a i r, mostly silent but sometimes yelling out in sudden anger. I changed his trousers when he was incontinent, I showered him when he was on my list and I fed him his dinner. In the daily reports, I would write, ‘Joe, no change.’ Things did change however. One afternoon I was in the panroom which was directly opposite the entrance to the dayroom. Joe was always seated in the chair facing this entrance. As usual, he was slumped down in his chair so I went over and hoisted him up into a more comfortable position. He suddenly

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lashed out and punched me in the side shouting, ‘Leave me alone, you bastard!’ — which, when he did speak, was a fairly typical comment from him. A bit stunned, I went back into the panroom and watched him. He looked up at one stage, caught my eye and shook his fist. So, I thought, he recognises me. This was a bit of a surprise, as I thought Joe was ‘too far gone’ to recognise anything about his immediate circumstances. He had always seemed very listless, depressed even, and often just stared at the floor. Suddenly intensely curious about whether Joe would be able to recognise me, I wrote my name in big letters on a piece of paper towel and, without thinking too much about what I was doing, went in and showed it to him. He was a bit bewildered at first; then, at my insistent ‘Joe, this is my name, do you think you can remember it?’ he looked at the paper and then up at me, scowling. I crouched down beside his chair and said, ‘My name’s Julie, Joe. You can keep this piece of paper so you won’t forget it. Is that okay?’ He looked at me again, looked at my name and, just as I thought he was either going to punch me again or just ignore me, he grinned, repeating several times, ‘Julie?’ I was pretty thrilled as I hadn’t seen him smile before, let alone grin. For the rest of that afternoon, I popped in and out of the dayroom to see if he still re m e m b e red me, and I waved at him from the corridor as I went past. But mostly he didn’t respond at all so I’d pick the paper towel up from his lap or the floor and show it to him again and repeat my request. Each time he smiled in a surprised

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way, as if at all the unexpected attention, and repeated my name. It was several weeks before Joe could remember my name without some sort of prompting. I’d been quite persistent in finding the name tag or writing another one, which he would often stare at for a while before putting it in his shirt pocket. Then one day I came into the dayroom and Joe, seeing me approach, suddenly said, ‘Oh, oh … I know you, you’re … you’re …’ But the question mark hung in the air and he lowered his head again, defeated. A few of the other patients, having witnessed my daily attempts, shouted, almost in unison, ‘Julie!’ ‘JULIE!’ Joe yelled out triumphantly, and reached out and took my hand. It was quite a moment. A few of the patients actually clapped, Joe beamed and I went around excitedly telling all the other nurses. From then on Joe never failed to remember me. I had only to walk past the dayroom down the hallway and he’d yell out, ‘Julie, Julie, that’s my Julie!’ — always rustling in his pocket for that elusive piece of paper, as if to prove to me that I was the name written on it. Gradually he began not only to recognise me but to become more and more enamoured, enchanted, with the idea of a romantic involvement with someone. His memories, and his ability to verbalise these memories, had been refuelled by my interest and he began to ‘court’ me. ‘Sarah,’ with whom in his mind I was now conflated, had been his fiancée seventy-odd years ago (Joe was now in his nineties). Not only did he speak of her with extreme reverence, but he seemed to think that she was me.

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The ‘courting’ began one day, in the middle of his shower. He looked up at me from the commode chair and said, ‘Julie, I have something to ask you — will you marry me?’ I was taken aback but, feeling that it could do no harm, and not wanting to seem hesitant and perhaps hurt his feelings, I said, ‘Yes, I’d love to, Joe,’ at which he grasped my hand and kissed it, saying, ‘I can’t believe you’ve said yes, Julie. I am such a lucky man.’ Once our ‘engagement’ had become established in his mind, Joe quickly gained confidence and began planning the wedding. Every time I was on duty a new chapter of the story unfolded. One of the most fascinating aspects of the Joe Story was the way in which he plotted what was for him a future event, using very vivid reminiscences of events that happened so many years ago. Coincidentally, I had just become engaged to someone else and this gave the experience with Joe a surreal weirdness. When I came to work one day wearing my engagement ring for the first time, Joe was one of the first people to notice. ‘I hope you like it, Julie. It took me so long to choose.’ By this time everyone, staff and patients alike, had entered into Joe’s romantic fantasy. The story had even become part of handover and often, when I was doing an afternoon shift, I was greeted with, ‘You better go and see to Joe, Julie — he’s been asking for you all morning.’ Joe, who had always been unpopular with the staff because of his grumpiness, began to flirt with all the nurses. Sometimes I would come into the dayroom to find him holding the hand of another nurse, laughing and joking. On seeing me, he would quickly let go of her hand and

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look up at me guiltily. Later he would whisper anxiously, ‘Don’t worry Julie, you’re the only one I love.’ A striking repercussion of the Joe Story was the way in which Joe’s sense of identity was transformed from that of a sick old man to that of a virile young one. Even though we were acting out a kind of fantasy, there was nothing unreal about the way he began to feel — happy, attentive, more involved in what was going on around him — and this was a man who, according to some of the staff, had sat for years in silence, using his voice only to yell abuse, or to cry. He still cried. He would cry with jealous rage when I attended to other male patients. Eyes full of tears he would say, ‘When we are married, Julie, you’ll not do another day’s work in this place. I’ll look after you.’ I’d go back to whatever I was doing and he’d watch me, sometimes yelling out things like, ‘Get the bloody bastard to do it himself for God’s sake!’ But these moments of jealousy were outnumbered by the moments of pleasure. He loved being tucked into bed and would say little suggestive things and then apologise. ‘We’ll wait, my darling, until after we’re married, don’t you worry. I am a gentleman.’ Often, after I’d left his room, he would break out into loud bursts of ‘Goodnight Irene,’ and other old songs I’d never heard before, to a chorus of ‘Shut up, you old fool’ from the rest of the patients in the bedroom. Sometimes people wonder about book titles. I know I do. I struggled a lot with the title for this book because I wanted it to relate to Joe, who was the one who started

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me thinking about the everyday act of storying. The thing Joe said to me most often was, ‘We’ll be married in Fremantle, my darling.’ He must have had a wonderful wedding, and a wonderful marriage, for this to feature so much in his conversations with me. For Joe, Fremantle was home — well, his heart was certainly there. And his desire for the comfort of the familiar, for the past — for Fremantle, despite the fact that he originally came from Scotland — is a desire that many of the people with Alzheimer’s Disease who feature in this book express. It was in thinking this through — the choice of title and the whole book — that I realised, with a bit of a jolt, that every person in this book was making the same kind of request — sometimes loudly, sometimes silently, sometimes ambiguously, sometimes desperately. For Joe, the storying of a marriage proposal was his way of asking for something, anything, familiar. And although this may seem presumptuous, I like to think that my saying ‘yes’ to him was an acceptance that enabled a friendship that went beyond fiction or fun or memory or protocol or politeness — a friendship that pivoted on a very long-ago, almost lost, sense of love and belonging.

‘Joe, could you keep the singing down a bit? Some of the other people in the room can’t get to sleep.’ ‘We’ll be married in Fremantle, my darling. It’s such a beautiful place.’

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INTRODUCTION

Here’s the situation. An everyday kind of situation. It’s evening and you and your friend are having a couple of drinks and a bit of a chat. You begin to tell a story and, after a little while, your friend suddenly interjects with a question, ‘Is that the same Sally who works for the vet?’ Or ‘But what happened in the years between the end of the war and your emigrating?’ Or ‘I’m not sure you have the facts straight — Eric seemed to think it was more her fault than his.’ Or ‘Yes! I know exactly what you mean because the same thing happened to me about five years ago at a pub in Melbourne.’ And so on. You are telling the story — you have the floor — but your friend’s interest in what is being related, and her constant (but expected) interruptions, influence the story to such an extent that it ceases to be your story and becomes a collaborative mix of her thoughts and yours. At many points in the story her response may actually change the direction of the

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story altogether, and, for a while, she may have the floor. What you end up with, then, is a collage of little snippets of story which, together, form a larger, collaborative story. And this process continues every time you meet with your friend. This is what the everyday act of storying is all about. It is about relating, it is about exchange, it is about collaboration, it is about performance. Everyday stories elicit responses, whether they are negative, positive, silent or verbal, and these responses a re part of how meaning is constructed in any act of storying. I say ‘part of’ because, although the listener ’s response may equal — for her or him — the meaning of the story heard, this may not be the same meaning that is constructed by other listeners or by the teller. So a story’s meaning is complicated, multiplied and enriched by the fact that it doesn’t belong to, or end with, any of these participants but is shared, and circulated like, as Trinh Minh-ha puts it, ‘a gift.’1 One of the reasons that an everyday story’s meaning is impossible to express in a nutshell is because there are so many people involved in the making of this meaning. It is a communal activity and ultimately it depends on the formation of a community; more immediately, it depends on its recipients, on the relationships between tellers and listeners in the process of storying, in order to work. It is important to realise that these relationships are a vital and necessary factor in the production of everyday stories. Ian Reid says that we ‘crave narrative, and we crave exchanges’2 and I think that we crave narrative because we crave exchanges.

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But what kinds of things are we exchanging when we tell stories to each other? Apart from the obvious things like interest, information, and so on, we are exchanging our selves. We are our stories and our stories are us. When we share our stories with other people (and by ‘share’ I mean both telling and listening), we share our selves. And it is through this process of exchange that we are able to have, to be, to know, our selves, as the self can only be understood in relation to other selves. Storying is the primary means through which we form relationships with people; it is not just a way of constructing the self, because to story ourselves is also to story the self ’ s connection to other selves, and the resultant relationships are a vital part of being functional, socially acceptable selves. This book derives from what was originally a PhD thesis in the areas of literature and cultural studies. In the thesis I tackled the question of how what I call ‘the everyday act of storying’ works, by examining, often re t ro s p e c t i v e l y, stories told to me by people with Alzheimer’s Disease. I had worked as an enrolled nurse in various nursing homes and hospitals over a period of about ten years, and had gained a series of impressions. Mainly, though, my interest in these particular examples of storying stemmed from the unusual relationship that developed between Joe and myself, which I now think of as a story relationship. This relationship transformed my attitude to people with Alzheimer’s Disease, who, in my previous work as a nurse, I had tended to dismiss as being incapable of telling stories,

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incapable of remembering and incapable of forming meaningful relationships. I had always cared for these patients’ physical needs and given comfort where I could in instances of emotional distress, but it had never occurred to me to take seriously what they actually said. It had never occurred to me to listen to a storying which I saw as rambling and nonsensical. But because of what happened between Joe and myself, I began to see how the act of storying was every bit as important to people who suffered from Alzheimer’s Disease as it was to those who did not. And Joe made me realise all sorts of things about the act of storying itself which is the reason I embarked on the PhD. The various literary and cultural theories that I read to help me understand how storying works and, more particularly, how storying by people with Alzheimer ’s Disease can work, also helped in my understanding of institutions and how people who end up in them because of Alzheimer’s Disease might be helped in simple rather than complicated ways. For me, listening to and honouring the stories and fragments of story told by those with Alzheimer’s Disease who can still speak, is vitally important. Also important is an awareness that even those people with Alzheimer’s Disease who can no longer speak are still storied, storying people. A friend of mine, whose father died of Alzheimer ’s Disease, described the twenty years after the onset of his illness as ‘hell.’ She was a compassionate person who c a red for her father for as long as she could before deciding that it would be better for everyone — her husband and young family included — if he were to be

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cared for in a nursing home. Before the illness her father had been a fairly quiet, reserved man but with a bad temper if provoked or irritated. His temper worsened with the confusion of the illness and he took it out on my friend and her family. She was very interested in my thesis but told me that her father didn’t story, he just yelled. There were a lot of things she described about the years of living with him that made me mindful of the dangers of over generalising from my own experience, and made me aware that some of what I have to say may not be relevant to everyone. The other thing my friend’s experience re i n f o rced for me perhaps goes without saying: although people with Alzheimer’s Disease form a group in that they share an illness, they do not behave, deteriorate or story in the same way. Many were not vocal in the first place and are less likely to want to tell stories (although sometimes people who were not vocal become so during the course of the disease). The deterioration of general health that accompanies this disease also affects the ability and desire to be vocal and tell stories. Most of the people with Alzheimer’s Disease who feature in this book were vocal, interesting, sometimes difficult and sometimes delightful storytellers. They were all ‘characters’, who drew attention to themselves through expressiveness and force of personality. As such they are not necessarily representative of the broader group of Alzheimer’s Disease sufferers. But each of them taught me, in different ways, something about relating to and with people with Alzheimer’s Disease; about relating to and with people. Of course there were people with

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Alzheimer’s Disease in the places where I worked who didn’t story; on the whole, they don’t feature here. I feel their absence as a weight as I struggle with why the attention I paid to the storying part of their lives didn’t ‘work’. Was it lack of time and energy on my part? Was it due to personality differences? Was it because some of these patients were in the later stages of the disease? Well, it was all of these things but, mostly, I suppose, it was just too hard — too hard to make sense of some of the vocalisations, too hard to listen to angst, too hard to read silence. And, of course, before Joe, as I’ve alr e a d y admitted, I didn’t take any of this storying seriously. I am now aware that even the silent have their stories; that this is something that needs to be acknowledged is part of what I am trying to convey in this book. From the outset I wanted my research, and the things it made me realise about the storying by people with Alzheimer’s Disease, to extend beyond academia, out into the public arena. I wanted to be able to share my own learning curve with nurses and other medical people caring for people with Alzheimer’s Disease in the hope of altering attitudes such as those I previously held. Even though most of what I say in the following chapters is about what often happens in nursing homes and hospitals, I hope that some of the things that I’ve realised will also be relevant to those who are caring for loved ones who suffer this disease. This book mixes the anecdotal with the factual; the biographical with the autobiographical. Throughout, I retell stories told to me by people with Alzheimer ’ s

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Disease, as well as telling about story experiences and relationships which I was either party to or observed. As I no longer work as a nurse, this book r e p resents a retrospective journey. In my telling and retelling of stories I have changed names and in some cases altered the facts slightly in order to protect people’s privacy. And it has to be admitted (as with any work which claims to tell the t ruth), that my memory is like anyone else’s — it enhances some things and subdues others. One of the things which fuelled my thesis, and now this book, is the fact that I love stories — I have always loved stories. And, here, I mean stories told in everyday life — their meanderingness, their mystery, their seductive power, their playfulness, their honesties and fabrications, their banalities and profundities. I’m fascinated by the way everyday stories work on us, so I’m also fascinated by how we use them. I am interested not so much in what stories mean but in how they mean. I am interested in the experience of storying — that thing that we all do every day, that thing that we all participate in every day. The story relationship between Joe and myself would not usually be considered unusual, would not ordinarily be considered extraordinary: it was made so by the fact that he had Alzheimer’s Disease and I did not, that he lived in a nursing home and I did not. The Joe Story, which began on a whim, almost by chance, was one of the most profound experiences I’ve ever had in the sense that it ‘unblinded’ me to the storying abilities and personalities of people with

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Alzheimer’s Disease. And, in an everyday sense, it also made the job so much more fun. Also, I was (and still am, when I think back to that time) flabbergasted at the d i ff e rence it made to Joe in the very obvious ways I described in the prologue. I have spoken at a couple of conferences about Joe and the Joe Story and the responses have been mixed. Most people have responded positively and some have even been moved. But some — mostly medical and nursing people — have questioned things. A woman in one audience asked, ‘What if, after saying yes to Joe, you had quit the job soon after? Weren’t you afraid of hurting him?’ She felt that what she saw as my game playing with Joe was potentially detrimental to him. My answer to this was that maybe it was Joe who was doing the game playing: maybe he was fully aware that he had entered into an impossible fantasy (the marriage idea) but thought it fun anyway. But I did wonder a lot about this. Actually, no I didn’t. It was a colleague who suggested this to me only recently and, so entrenched had been my assumption that Joe did not know what was going on, I guess I thought that he thought it was real. But whether Joe was or wasn’t ‘playing’ it didn’t seem weird or wrong to say yes. I didn’t know it was going to become a daily story situation. Even when I felt, or was made to feel, slightly uncomfortable about it, it was still great fun. And it was fascinating all the more because Joe was ninety-three. A nurse in another audience felt that I was being overly critical of nursing staff. She said that in her nursing home

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they used all sorts of therapies and programs to improve the quality of life for patients with Alzheimer’s Disease. I said I wasn’t talking about therapies and programs as such; I was just talking about how the Joe Story made me realise the importance of simply listening to people with Alzheimer’s Disease in a way which was not part of a therapy or a program but part of everyday life, part of being human. More than anything else, this book is an attempt to raise awareness of, and celebrate, the storying by people with Alzheimer’s Disease; to encourage people to listen to a storying which, no matter how fragmented or seemingly disconnected, is still storying — that thing that we all do every day. It is through my story experiences with the people who feature in this book that the vital importance of everyday storying for all of us has been made so clear to me. I listen to people now with a much greater respect for the storying part of all of us than I did before meeting Joe.

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1 D ream Geographies

Some mornings, like this morning early, the grandmother would study an old road atlas, three miles to one inch, only certain pages of course, as she was familiar only with two or three small areas … The names and the recollections were a kind of poem. Elizabeth Jolley, The Orchard Thieves1

I remember being intrigued by a close-up of a chameleon changing colour during a nature program on television. The commentator was explaining how the chameleon literally absorbs colour from objects in its environment in o rder to reflect this same colour and blend into its surroundings. What the chameleon does is a lot like what we do when we tell stories: our everyday stories absorb and reflect our physical surroundings in complex ways. This is not something we necessarily t r y to do; it just happens.

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E n v i ronment doesn’t just mean place, but also the objects and routines which occur in particular places. Our stories involve our surrounding environment, and the act of storying is a way of adapting to, using and sometimes changing this environment. So our whereabouts play a large part in the formation of our stories and our stories play a large part in the formation of our whereabouts. These whereabouts are, first and foremost, material — seeable, hearable, and touchable. The fact that place is one of the generative forces, or circumstances, behind stories told in everyday life may be obvious but it is often overlooked. The storying by people with Alzheimer’s Disease who are institutionalised serves as a dramatic illustration of how all stories arise from particular geographical situations. The experience of displacement, for instance, is in itself a component of these stories and suggests the vital importance of place to any story told by any person. It could be said that stories have a material or tangible geographical reality. Even when these geographies are imagined places, it is this re m e m b e red or dreamed materiality which gives to stories their concrete ‘realness’. If stories told by people with Alzheimer’s Disease were understood as being generated by place, then perhaps they would be less misunderstood as empty, as meaningless, as ramblings. The afternoon David was admitted to the nursing home, I was the one who opened the double-locked doors and asked the ambulance attendants to wait with him in the foyer while I found the matron. I remember a fleeting first impression of a tall, well-built, middle-aged man (he

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didn’t seem more than about sixty years old) dressed in a suit and tie, looking very distinguished and calm although a little confused. As I wasn’t assigned the task of admitting him, I didn’t see him again until much later when we were doing the final round before knock-off time. It was late evening. The other nurse and I came into the shared room in which David had been placed. John, the man in the other bed, was moaning and writhing around in urine-soaked bedding. John was in the ‘last stages’ of Alzheimer’s Disease and could no longer speak. David was sitting very upright in the chair beside his bed. He was still in his suit and tie, and his suitcase lay open on his bed, unpacked. The cup of tea on the table in front of him lay untouched. He was obviously startled by our sudden appearance, so I said, ‘Excuse me,’ as we d rew the curtains around John and attended to him. Through the curtain, we heard David whisper to himself, ‘Well I never!’ several times and I suddenly realised, as I never had before, what a shock it must be for people with Alzheimer’s Disease, already disorientated by the disease, to be suddenly thrust into such a new and strange e n v i ronment. (In my care of people with Alzheimer ’ s Disease over the years I had often assumed that, since they were a l re a d y so disorientated, it wouldn’t re a l l y matter to them where they were — the confusion would be the same.) This realisation on my part made the next thing very difficult. Our task on this last round was to get patients quickly undressed, toiletted (there were commodes in each room) and into bed. So, after attending to John, we

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sort of pounced on David, saying things like, ‘Right David, time to go to bed now, have you been to the toilet yet? We’ll give you a hand, don’t worry, nice and cosy now, have a sip of water, good man, goodnight,’ as we hoisted him up, pulled his trousers down, sat him on the commode, undressed him, put his pyjamas on, then hoisted him into bed, gave him a drink, tucked him in, turned the light off and left the room. I remember his bewildered protests, his embarrassed, ‘I can do it, please,’ as we undid his trousers, and his quick, agitated b reathing as we tucked him into his new bed. Fro m halfway up the corridor, I heard him call out, ‘Excuse me, dear, could you please show me the way home?’ But we were in a rush and didn’t go back to him or even respond. The next day, and every day for months afterwards, David continued to appeal to all of us, ‘Excuse me, dear, could you please show me the way home?’ He would wander around and around the nursing home, up and down each corridor, constantly trying to open the locked doors at the front. But he did all of this in such a gentle, polite manner that his desperation only became apparent when he somehow ‘escaped’ through the kitchen entrance one day into the back garden, which was fenced. He must have sat there on a stump under the bougainvillea for hours, because that was where he was sitting when, after ages of searching the surrounding streets, someone thought to look there. The nurse who found him was so relieved (since he was on her list for the day) that she dragged him inside shouting, ‘Here he is!’ and reprimanded him (‘That was very naughty David!’), then

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put him straight to bed, even though it was only five pm. Sometimes, when there was time, I would take David’s arm and walk a lap of the interior of the nursing home with him. He would ask me to show him the way home and I would say I wasn’t sure. He would then launch into reminiscences of ‘home’, and from these episodes I d i s c o v e red that he had been a farmer and had been b rought up on a farm near Bridgetown in the southwestern corner of Western Australia. He said enough for me to become interested and, as I had begun working on the thesis that became this book, I thought it might be a good idea to interview David in a more ‘natural’ environment. The nursing shift was always so rushed and the environment itself so regulated, that there was little opportunity for a decent conversation let alone an ‘interview’. And I thought David would welcome the chance of an outing. So, after seeking permission from the matron, and agreeing to do it in my own time, I arrived one day, out of uniform, and, much to the bemusement of the other staff, proceeded to take David ‘out’. This wasn’t as easy as I’d expected. David did not recognise me as the nurse who had listened from time to time to his reminiscences. This was obviously partly to do with his disease, compounded because I wasn’t dressed in my regular uniform and was doing something vastly d i ff e rent to the usual daily routine. Even though for weeks he had been trying to ‘get out’, he was quite reluctant to come with me through the front doors into the sunshine. He looked at me suspiciously as I opened the doors, and I had to keep assuring him that we were

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just going for a walk to the park, would come straight back if he got tired, and so on. He took my hand gingerly and seemed almost afraid of me. As we walked slowly up the driveway, he kept looking back at the nursing home as if for reassurance. Already I knew that my plan was not going to work. Nevertheless, as we walked along the footpath, David began to relax a little. A branch, broken by recent winds and hanging precariously from a tree, immediately took his attention. ‘This will never do,’ he muttered and, before I could stop him, he had wrenched it down and thrown it into someone’s front garden. Although he was a large man, he was quite frail and the effort left him teetering a little. I reached out and steadied him but he shrugged me o ff as if suddenly made confident by his actions. We moved slowly up the street, crossed the road and reached the park. By this time David was panting from exertion and was grateful to sit down with me on a bench. I r e i n t roduced myself because, even though I had explained who I was and what I wanted to do and had gained his consent before we left the nursing home, he was looking very confused. I asked again if he’d mind my asking him a few questions about his life. ‘Of course I don’t mind, dear,’ he said, looking around him for something familiar. There was a long pause as he searched and, eventually, not finding anything familiar, he picked up some litter from the ground, put it in his pocket and looked at me. ‘Are you taking me home?’ he asked. ‘No, David,’ I answered, ‘I wish I could, but you’re too

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ill to go home at the moment. I just thought you might like a bit of fresh air, and I wanted to ask you about this home you always talk about. What is it like?’ He began to tell me things about his childhood home. About his six brothers and sisters and his being the youngest; about his mother cooking roasts every Sunday and inviting the new schoolteacher home one Sunday and what a failure that was — he hinted at something a w k w a rd having happened but wouldn’t or couldn’t elaborate; about the farm, the cows; about how he was the only one interested in farming and how it had all been up to him; about the hard work, getting up at dawn to help his dad while the others slept; about being caned by that schoolteacher months later for truancy and his mother ’s anger with the teacher; about the two middle names he’d been christened with — Emmanuel and Zachariah — ‘straight from the Bible, my mother told me’; about the big, rambling house with snakes under the floorboards and birds in the roof; about being harnessed to the Webbwasp lawnmower and running with it ‘like a horse’ while his mother pushed; about how he loved to run and run and run. These stories did not come out of David in a rush. They were interspersed with the longest pauses I have ever lived through. At first I interrupted what seemed like deep thought by asking another question but this only f l u s t e red David and I learned, after a while, to wait. Several times, as I was just about to give up and suggest we go back to the nursing home, his eyes would suddenly light up with a memory, and in these moments he was

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very fluent. But, just as suddenly, his eyes would cloud, his voice would falter, and silence would fall again. ‘I’m sorry, dear,’ he said repeatedly. All my questions about his more recent pre-nursing-home past drew a blank that day. After nearly an hour I thought we’d better head back, as David looked tired. ‘Are we going then, dear?’ he asked eagerly, and his vulnerability and dependence on me for what might happen next on this most bewildering day was another turning point for me. I realised that, even though the nursing home was the place from which David had long been trying to escape, it was now his only familiar place. He spoke of ‘home’, his long-ago family home, with such obvious longing. Yet when we came within sight of the nursing home, David began to hurry. ‘It might be teatime,’ he said and, patting me lightly on the shoulder, ‘Thank you for bringing me home, dear.’ I decided then not to do any more ‘interviews’ as such. I remember thinking that afternoon, on the way to my own home, what a disaster it had been. I suppose I’d imagined that an afternoon of freedom from what I felt was the oppressive, over-regulated and often impersonal atmosphere of the nursing home would be a pleasure for David. I’d imagined that he would tell me all sorts of things about his life; it would be just us, so he’d feel freer to talk and I’d have more time to listen. But, although he did tell me interesting details of his life, my overall impression that day was of a man even more dislocated by my sudden interruption of what he’d just become used to. He was already disorientated by Alzheimer’s Disease and by having been institutionalised. Taking him out that

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day only caused him more confusion. He didn’t know w h e re he was. At first he thought, fleetingly, that the ‘outside’ was part of his farm but that only lasted a moment or two. And I realised too, with some distress, that, despite my willingness to listen to David’s stories, my inability to ‘read’ — to understand — them was part of the problem. The next day I was on duty, and I found David again wandering around the nursing home trying to find a way out. I reminded him of our afternoon in the park, the stories he’d told me, the branch he’d pulled from the tree. But he just looked at me blankly and said, ‘Could you show me the way home, dear?’ Had David not been institutionalised, he may well have spoken less avidly, less vividly, about ‘home’. It was the nursing home and his feeling that he didn’t belong there which seemed to trigger his reminiscences and his longing. And it was his r e m e m b e red home which generated his stories. In Places From Ellesmere, Aritha Van Herk’s haunting description of the ‘meaning’ of home for all of us becomes even more poignant when applied to people like David: Home: what you visit and abandon: too much f o rgotten/too much re m e m b e red. An asylum for your origins, your launchings and departures, the derivations of your dream geographies.Where you invented destinations. Always and unrelentingly (home) even after it is too late to be or to revert to (home), even after it pre/occupies the past tense.2

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David didn’t just speak of another time and place, he spoke from another time and place. He would often speak as if he were still on the farm, he would point to objects in his shared bedroom as if they were something else: a chair would be a fence post, a bed would be a haystack. I’d take him into the dayroom for dinner and he would look around at all the other patients and say, ‘Here, give me a hand to shift those calves, would you?’ And yet, once he was sitting down at the table he would seem to be very much ‘at home’ and would speak to whoever was sitting beside him as if they were old friends. I was often fascinated by snippets of conversation between one Alzheimer’s Disease patient and another that I heard as I performed my tasks. David would say, ‘If we don’t get rain soon things are going to be rough.’ (It might be pouring outside.) And Andrew, who sometimes sat beside David for meals, would say, ‘Nice for the kids though, they love the beach.’ To this, David would reply, ‘I think Judy’s coming home this Christmas. I’ll have to fill in all those potholes — she’ll say, “When are you going to pave the driveway, Dad, it’s dreadful.” She always says that.’ And Andrew would say, looking out the window, ‘Makes you feel bleak, this weather. The wife and I are going up the coast this winter. We’ve been doing that every year since I retired. Good to get away from this place once in a while isn’t it?’ Both men were talking at cross-purposes, their stories slipping past each other, and yet these conversations were obviously important to them. They seemed to enjoy talking to each other for the sake of being able to tell someone something. But of

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course it was more than that; it was company, communication, connection. What was interesting was that they were rarely able to ‘connect’, either with each other or, in a dir e c t l y referential way, to the immediate environment. And yet they sat quite comfortably eating their meals together as if they had been doing this all their lives. For those few moments they seemed to be very much ‘at home’. The communicative value of their stories lay in establishing emotional contact — wrought through storying — a bond with each other, no matter how temporary. Later on in the day they often wouldn’t even recognise each other. As David became more accustomed to life in the nursing home, he became more vocal. He loved to talk about the farm and his past life. It was obvious that he thought both still existed and that the nursing home was some sort of temporary place. Sometimes he would say things like, ‘I’ve just had to mend that fence in the back paddock, terrible job, and those nephews are no good, they never even turned up. All they’re interested in doing is going to the pub.’ As I got to know David, I noticed that his stories not only referred to a distant past but also to a more recent past. It was often difficult to distinguish between the two, but sometimes he’d speak of himself as child and sometimes as adult. He would talk about buying a new tractor and running cattle, about how farming was the only life he knew and he wouldn’t trade it for the world. ‘It’s a wonderful life, isn’t it — there’s always something to do, isn’t there?’ he’d say, wiping his b row from the exertion of his continual walking. ‘My

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wife, she always complains when I’m late for tea. You’d think after all these years she’d understand but she just says, “David, come and have a rest”. But I tell her I like all those little jobs that are just sort of waiting for you day in day out, just waiting for you, like friends.’ David’s storying was fascinating in its constant, and sudden leaps from tense to tense. He would mostly speak of his childhood in the past tense and about his more recent past in the present tense but often even the childhood anecdotes were told in the present tense. In one lap of the nursing home David could travel hundreds of kilometres in space and decades in time. For people with Alzheimer’s Disease, long-term memory is one of the last things to be lost. The distant past, which usually consists of the childhood home, often becomes an immediate thing and seems almost to obliterate the more recent past, and often the present. This can be frustrating and disturbing for carers, especially for offspring who don’t feature in many of these memories. And yet these childhood memories of ‘home’, when they are more or less intact and able to be expressed relatively fluently, seem to provide a certain amount of comfort. Oliver Sacks cites the interesting case of a ‘Mrs O’C’ who suddenly, in later life, began to experience strange, musical, dreamlike seizures in which her mind and ears seemed to be filled with the Irish songs of her childhood. Eventually, after numerous tests, this was attributed to Mrs O’C’s chronic nostalgic need for a past home which, consciously, she had never been able to remember. This was because (it was eventually discovered) her father had

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died before she was born and her mother before she was five, after which she was sent from Ireland to America to live with an aunt. That she had never had any memory of ‘home’ is described in the following way by Sacks: She had always felt this as a keen and painful sadness — this lack, or forgetting, of the earliest, most precious years of her life. She had often tried, but never succeeded, to recapture her lost and forgotten childhood memories. Now, with her dream, and the long ‘dreamy state’ which succeeded it, she r e c a p t u red a crucial sense of her forgotten, lost childhood. The feeling she had was … a trembling, profound and poignant joy. It was, as she said, like the opening of a door — a door which had been stubbornly closed all her life.3 In my experience of nursing people with Alzheimer ’s Disease it is this ‘door’, the door to the distant past, which is often the only door still open. When I read the account of Mrs O’C, I was struck by the realisation that some people with Alzheimer ’ s Disease, despite the characteristic ability to remember their childhood homes, might be denied this recourse — this solitary comfort — because of having experienced an earlier, childhood, dislocation. If ‘home’ is a ‘feeling’, then the emotional void, and added confusion, for people who have not only developed this disease but have also led dislocated lives must be devastating. In comparison, people like David seem almost fortunate. At least they are able to experience a state of mind which Sacks refers to as

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‘being-back-home’. For David, though, this state of beingback-home required a constant, daily search. David was what people in the nursing profession call a ‘ w a n d e re r ’ — wandering is often symptomatic of Alzheimer’s Disease. But I had never come across anyone who wandered as constantly as David did. He would walk from dawn to dusk, unable ever to sit down for very long. He would sit down for his meals and, having eaten, immediately get up and recommence his journey. He would still be wandering around the nursing home after everyone else was in bed, and getting him into bed was always difficult. On his first night in the nursing home, after we had put him to bed and gone home, the night staff said that he’d got straight out of bed and given them an awful fright by entering the nurse’s station and asking if they could show him the way home. Not many of the patients in the nursing home where I met David could walk, so he always seemed quite d i ff e rent. David liked to ‘call in’ on his way past the nurse’s station each day. As he went past at least twenty times a day, this became a ‘problem’ and, depending on who was on duty, he would either be gently persuaded to leave, welcomed briefly, or reprimanded. Sometimes he would say things like, ‘I’m on my way home from school. Mum asked me to see if you could do with a chook.’ Or sometimes, ‘Could someone give me a hand to get the cows out of the garden? Phil left the gate open again,’ or ‘Ring the vet, she’s calving and it doesn’t look good.’ Whatever he said always seemed so funny that the nurses would laugh, urge him back out into the corridor and say,

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‘We’ll be with you in a moment, David.’ It struck me that David’s stories came from m a n y places. Where there was lino he saw grass; where there was a door he saw another door or a fence; where there was a kitchen he saw a hayshed; where there was a washing machine he saw a pump that needed to be fixed. His storying, which at first seemed to me to come from a kind of nowhere land, an in-between-time-and-place land, began to impress me as a kind of overlapping, or imbrication, of the reality of now and the memories of then. These memories were striking in their concrete detail, in their evocation of material objects, of physical work, of the daily events of David’s life on the farm. But they were triggered by the material objects in the nursing home, the place itself, its corridors, its nurse’s station, its dayroom (which also served as the dining room) and its patients. David made ‘friends’ of all these t h i n g s; he made them familiar by talking about them as if they were something else. For him they were something else. He was never quite sure what to do with us, the nursing staff, but eventually we too became people he’d known in his past. He never did this directly (for instance, he never said to me, ‘Hi Bob’) but he would often point out a nurse to me and say things like, ‘What do you think of young Jeff? Do you think he’ll do?’ Michel de Certeau talks about how in everyday life ‘the places people live in are like the presences of diverse absences’, so that ‘what can be seen designates what is no longer there’ and this creates a ‘moving layers’ effect.4 David was determined, it seemed, to make the unfamiliar

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familiar. Even his bedroom door became, for him, other doors from other times and places. This plain white door could signify a double door made of jarrah, or a flyscreened kitchen door, or the unhinged door of a shed. So David’s storying was contextualised and generated not only by the actual door in the nursing home, but also his interpretation of that door through his memory of other doors in other places. And his storying also provided a means by which he was able to regenerate, or reframe his s u r roundings by simply remembering. For David, storying the past allowed him to reshape his actual surroundings into a more comfortable space. In an article entitled, ‘Making Sense of the Stories that People with Alzheimer’s Tell: A Journey with my Mother’, Jane Crisp describes how one of her mother’s favourite stories transformed a real television aerial into an imaginary danger notice that she believed she had asked her architect father (long dead) to build. The danger notice was to warn people about the local (real) hot springs, and it saved many lives, so the story goes. For people with A l z h e i m e r’s Disease, Crisp goes on to say, ‘past and present, fact and fantasy tend to get jumbled up together, much as happens in dreams, and yet — again, just as in dreams — can seem completely real at the time.’5 The fact remains, however, that people with Alzheimer’s Disease are lost. David was disorientated. He was dislocated in time and space. He didn’t really know where he was or who we were (both staff and patients). But he did know who he was and where he’d been and his storying demonstrated an uncanny sense of place, even

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though this ‘place’ was a very precarious place within a place within a place. His storying was contextualised and generated by all of these places — the nursing home, his childhood home and his life on the farm before he became ill. With the confusion which Alzheimer’s Disease brings, and the added confusion of institutionalisation, I believe that it was only David’s storying which enabled him to function in such an unfaltering way within and between the various places which he had to negotiate. Our storying always issues from a somewhere. A place. I continued to interact with David during my shifts at the nursing home. His determination to find his way home was relentless even though, at another level — bodily needs, hunger, sleep and so on — he was forced to accept his present circumstances. But this was never an easy acceptance. His stories about home were compelling in the sense that his whole face became animated, and his stride more forceful, whenever he was telling them. Eventually his stories of home became an inextricable part of his life in the nursing home. He, literally, ‘made himself at home’ by bringing his memories of another ‘home’ — another place and time — into his daily nursing home existence, and gradually, if precariously, he became more contented, more used to, his new home. David was lucky. He was mobile. It is difficult to ‘live through’ the space of wherever you are if you can no longer walk; if you can no longer turn over in bed, get comfortable in a chair, hold your own cup of tea; if you are no longer in control of your bladder or bowels. It is difficult for a body to relate to other bodies when the

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owner of the body is unable to move freely or to choose his or her movements. Alzheimer’s Disease is not simply disorientation, and institutionalisation is not simply dislocation. The combination of the two means not being able to move freely within these new spaces. In my opinion, the disorientated nature of the storying by people with Alzheimer’s Disease is exacerbated and accelerated by their experience of being relocated into institutions. In other words, it is not simply Alzheimer’s Disease that generates the inventiveness of storying like David’s. The reinvention, through storying, of the nursing home environment by those who are institutionalised is also due to the way this environment tends to intensify the confusion which is symptomatic of the disease. Anyone thrust suddenly and inexplicably into a new and very different environment will tend to ‘make things up’ as a way of assimilating to that environment. As Julian Barnes puts it in A History of the World in 10 Chapters: We don’t quite know why we’re here, or how long we shall be forced to stay. And while we fret and writhe in bandaged uncertainty — are we a voluntary patient? — we fabulate. We make up a story to cover the facts we don’t know or can’t accept; we keep a few true facts and spin a new story round them …6 It isn’t just people with Alzheimer’s Disease who do this. We all do it. The nursing home environment exacerbates the confusion of people with Alzheimer’s Disease for many

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reasons. The transition to an acceptance of the nursing home environment as ‘home’ is never comfortable. It is not just that the place is unfamilar on admission; it tends to remain unfamiliar due to frequent changes. These include not only changes in the routines. There is often a rapid turnover of staff in nursing homes, for instance, so there are always unfamiliar faces — something that can be disconcerting and frightening for patients with Alzheimer’s Disease. Similarly, with the employment of more men as nursing assistants in nursing homes, elderly women patients can be shocked to have — suddenly, and without warning — young men undressing and showering them. Even when patients have reached a stage in their disease in which they no longer seem to recognise their own children, this kind of shock dislocates them even further. Indeed, changes which shock are endemic to the nursing home environment, like the shock of an unsympathetic, or incompetent new nurse, or the shock of having to share a bedroom with strangers, or the shock of being moved from one bedroom to another in the frequent r e s h u ffles necessitated by deaths and admissions. Judith Davis cites the External Environmental Analysis for Dementia Care table, formulated by the Sir James McCusker Training Project in 1993, which lists environmental factors which either ‘support’ or ‘fatigue’ those with dementias such as Alzheimer’s Disease. Listed under the fatiguing column are things like ‘confined in one space’, ‘dim light’, ‘too many sounds’, ‘constant background sound’, ‘clinical or noxious smells’, ‘clutter;

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absence of objects’, ‘purposeless activity’, ‘demanding people; non-supporting family; being expected to function as part of a group’, and ‘uninterested’ caregivers. Under the supportive column, the ideal ways of using space, light, colour, objects and social activities are listed.7 The thing that strikes me about this table is its idealistic nature. The supportive elements often weren’t there in the four institutions in which I worked over the years. For the most part, what actually happened in those institutions equated only with the fatiguing elements described above. This meant that people with Alzheimer’s Disease, who were already tired, ill and old, were likely to be even more fatigued by the kind of detrimental environmental factors they encountered. When all of this is recognised, then the institutionalisation of people with Alzheimer’s Disease — who, due to the confusion caused by the disease, are often unable to even give their consent — can be seen to be a species of violence. It is no coincidence that the institution of the nursing home resembles, in many ways, that of the prison. Michel Foucault, in Discipline and Punish, talks about how ‘panopticism’, for instance, was utilised not just in prisons but in many institutions — ‘hospitals, workshops, schools’. 8 The Panopticon, or central observation tower, devised by Jeremy Bentham in the eighteenth century, was seen as a breakthrough in prison design and surveillance since it made close and constant observation of prisoners possible. Of course, not every nursing home has an observation tower at its centre . Rather, it is the idea of the panopticon tower which has

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p revailed, the idea of surveillance that is implicit in nursing home routines and practices.9 Lack of privacy is a good example of this. Bedroom and bathroom doors in nursing homes are almost always left open so that nurses can do a quick check at any time of the day. Doors to the outside are usually locked so that the patients are confined to a space in which they can constantly be observed. The dayroom is often situated at the centre of the nursing home so that the patients can be seen from more than one angle. Foucault mentions the ‘coercion’ which is effected by this constant surveillance of people.10 In a nursing home this surveillance includes a relentless supervision of things like eating, toilet habits and sleeping. The fat patient is not allowed too much food, the lethargic patient is not allowed an afternoon nap, the restless patient is not allowed to wander and is often restrained in a chair, the lazy patient is not allowed to use a wheelchair but must walk, the incontinent patient is put on the toilet every two hours to avoid ‘accidents’, the patient who is too loud and boisterous is confined to his or her room, the unsociable patient is not allowed to stay in his or her room and is encouraged to mingle, the smoking patient’s cigarettes are rationed, the dying patient is guarded and the behaviour of the demonstrative patient is curbed. It often seems like people with Alzheimer’s Disease are quite accepting of this supervision, happily passive, even grateful for assistance. But, on the contrary, they may be anything but docile when they are first admitted to the nursing home. They may argue against routines and

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regulations and resist coercive pro c e d u res but, in my experience, it usually takes less than a week for most of these patients to become ‘docile’, amenable, obedient — in short, to conform and comply. They get used to being whisked back and forth to the toilet, brought down to the dayroom for the communal meals, showered as early as five am, given pain-killers and sleeping tablets during the drug round and not before: they get used to a lack of choice about anything. Under the watchful eye of their new carers, patients succumb or submit to a disciplinary control. One of the most effective means of control is, of course, the use of sedation, now a controversial issue. Sedatives and antipsychotic medications are prescribed, effectively if not specifically, in order to force patients into a docility which makes them easier to deal with. Many studies reveal that these medications often lead to incontinence, confusion and withdrawal or may accelerate, or even produce, the onset of debilitating symptoms associated with advanced dementia. 1 1 Nevertheless, these medications continue to be used because the result is an e a s i e r-to-handle patient. Incontinence, sleepiness and confusion seem easier to deal with than agitation or restlessness. People with Alzheimer’s Disease who are institutionalised often need the kind of help that entails their being watched, closely and constantly. This means that their lives, in terms of the otherwise private activities of toilet, shower, rest and recreation, are no longer their own. And on a daily one-to-one basis, this constant surveillance must cause a certain level of anxiety for those who are

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watched, no matter how caring this watching is. Institutional discipline is such an effective means of control that it can manifest itself in self-control. Foucault argues that we have become so accustomed to having our behaviour (at school, in the workplace, in hospitals, in prisons) watched, observed, controlled and recorded that we have learned to watch ourselves and, in so doing, to govern our own behaviour. In my experience, the way that nurses carry out their duties gives evidence to Foucault’s notion that we internalise institutional discipline as selfdisciplinary techniques. Nurses are conscious that they, too, are being observed — this is how the mechanism of panoptic surveillance works. Not only do the sisters in charge watch the nurses but the nurses watch each other, which is why the routines of the nursing home are carried out meticulously, even when they make no sense, even when they may be unfair to the patient and even when it is obvious that they are ineffective. As Foucault points out, once incorporated, the technique of surveillance is allencompassing. It effectively controls not only patients, students, employees and prisoners but also their nurses, teachers, supervisors and warders.12 While I was showering Joe one day, he started talking about Fremantle; this was a favourite topic. ‘It’s such a beautiful place, Julie. When are we going to visit it again?’ Later, as I was wheeling him past the fro n t doors, he exclaimed, pointing to the outside, ‘There it is! That’s Fremantle, Julie. Oh, we’re here!’ So, on impulse, I said, ‘All right, Joe,’ wheeled him outside and went to get an easychair for him from the dayroom. ‘Where are

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you going with that?’ one of my colleagues asked me suspiciously. ‘I’ll be back in a minute,’ I said innocently, aware, all the same, that there would be trouble. And, no sooner did I have Joe comfortably positioned in the sun with a cup of tea, than the same nurse saw us through the window and yelled out, ‘What do you think you’re doing?’ Joe had been saying, ‘Aah, see, Julie, I told you it was a beautiful place,’ thoroughly enjoying what he imagined was a morning in the We s t e r n Australian port city. But it didn’t last long. The sister in c h a rge was informed and I was told to bring him straight back in, he’d catch cold out there, we didn’t have time for such antics and, anyway, that wasn’t Joe’s chair. Davis, in her examination of how place affects aging says, ‘The more impaired the person, the greater the impact of the environment and the subsequent need for increased continuity and familiarity in the surroundings.’ She cites the example of Bernard who had lived with his wife Catherine in their home for thirty years before he was diagnosed with Alzheimer’s Disease. In this familiar environment they were able to cope quite well until, a couple of weeks before their daughter’s wedding, Catherine arranged a dinner party: To accommodate the guests it was necessary to rearrange the furniture in the dining and lounge rooms. When Bernard came into the rearranged room, he was bewildered and he asked his guests to take him home immediately. Bernard’s agitation was such that Catherine had to leave the

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dinner party and go with Bernard to an undisturbed area in the house. Catherine and Bernard spent a quiet evening in their usual manner: dinner in the den, the television news, half an hour of classical music, a walk around the block, a cup of warm milk. Bernard went to bed and slept soundly, while Catherine joined her guests for coffee.13 Bernard’s social competence was drastically affected by changes in the physical environment. It is ironic that in our society the less ‘socially competent’ a person with Alzheimer’s Disease becomes, the more likely it is that they will be institutionalised. As the condition worsens, the need for a stable environment becomes acute and yet, tragically, it is often at this very point that people like B e r n a rd are institutionalised. Obviously, this is often unavoidable. But it is not institutionalisation itself that alienates people with Alzheimer’s Disease. It is what happens after institutionalisation. For people with Alzheimer’s Disease, the ability to tell stories that d o c a p t u re the interest of the people looking after them is one of the few tactics left to them in the environment of the nursing home. In the institutionalisation process, so much is stripped from them. Literally, many lose their homes. And often they lose their loved ones. In my experience of nursing people with Alzheimer’s Disease, visitors were few and far between. Often family members stopped visiting altogether, discouraged by the fact that they were not recognised or (it would sometimes seem) not even welcomed by the patient. Moreover, patients lose most

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of their belongings. In the nursing homes where I worked, patients were permitted to bring with them only their clothes and a few small personal possessions. Anything large, like furniture, was not allowed because there was no room. Jewellery was discouraged due to the risk of theft. If jewellery was brought in, it was locked in a safe. And so on. But these losses are minor in comparison to the loss of dignity, of privacy, of choice about even the smallest matters. By realising how the material aspects of place determine stories told by people with Alzheimer’s Disease in institutions such as nursing homes, I have come to the conclusion that the everyday act of storying is saturated by our real physical or material ‘whereabouts’. Obviously the idea of ‘real’ carries with it many meanings and implications. I am using it here in the simplest of senses to mean physical, tactile, experiential, concrete. Foucault emphasises that the spaces that disciplines such as medicine create are not only ‘hierarchical’ but also ‘architectural’, and ‘functional’. He says these spaces are ‘real because they govern the disposition of buildings, rooms, furniture.’14 And these spaces or places are also real according to how hot the coffee is, who we bump into on a particular day, the colour of the walls, the loudness of the television, the hardness or softness of the beds, and so on and on through the myriad material stuff of our lives. Despite the ‘dysfunctional’ nature of stories told by people with Alzheimer’s Disease, some useful similarities can be drawn with the storying that we all do on an everyday basis. In fact, it is the seemingly dysfunctional

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aspects of their storying which expose the heart of all storying. We all tell stories just in order to be, stories which situate who we are in relation to others. And these stories are themselves situated: they are determined by where we are, or were, physically. These complex and multiple geographies also determine how, and if, our stories are ‘read’ or heard. David’s geographical reality, for instance, wasn’t understood as memory; it was understood as a kind of craziness. People with A l z h e i m e r ’s Disease who are institutionalised are physically isolated from the rest of society, so lose close contact not only with their family and home but also with people in general. This is why their stories are so often generated by a longing for home. And just as past and present places generate these stories, the telling of them is, in turn, a way of negotiating and transforming the place of the present. In other words, the act of storying is a process through which we are able to reframe our surrounding environments — in both down to earth and imaginative ways. In so doing, we are able to realise our own agency, or autonomy, rather than succumb to being powerless and acquiescent. Storying is an act of survival — and an act which is potentially subversive. If the stories of people with Alzheimer’s Disease were read through the context or circumstances of their physical surroundings, both past and present, then p e rhaps they would no longer be stigmatised as nonsensical, but taken more seriously as innovative narratives which make use of these environments. The reality of the past, for the storyteller at least, is no less real

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than the reality of the present. The storying by people with Alzheimer’s Disease is not just a journey into the past despite often being perceived that way. Instead, the past seems to be an ever-present factor in stories told in the ‘now’. So the act of storying re-creates the present by incorporating the past in such a way that it becomes the very texture of the present. Such stories, of decades-ago experiences, of dreams and places, are used to create new and imaginative spaces for those in nursing homes, spaces which are more habitable and more exciting than the dayroom or a shared bedroom. In this way the past, whether ‘real’ or imagined, comes to inhabit the present to create a more liveable place. The storying by people with Alzheimer’s Disease can be seen to be a powerful means of asserting agency. By taking ownership of their w h e reabouts through their storying, nursing home occupants with Alzheimer’s Disease, like all of us, are able to convert ‘Where am I?’ to ‘Here I am’.

‘Where are you going?’ I asked David. ‘I’m going home, dear,’ he smiled. ‘Would you like to come along? My wife makes scones on Saturday afternoon.’ ‘I’d love to,’ I replied and, taking his arm, we did another lap of the nursing home and slipped, momentarily — easily — through its horizon.

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2 Branding

The progressive impairment of verbal communication that is experienced by people with dementia can contribute to severe social isolation … This isolation is increased when other people avoid interactions because of their lack of knowledge about how to communicate and/or their feelings of embarrassment. Judith Davis, Older Australians1

I’ve seen cattle being branded. It’s not very nice — it means being boxed in, it means being confused and frightened, it means pain. The whole idea of being physically boxed in gives most people the horrors. But to be socially boxed in to a category is just as horrifying in that it can make it very hard to convince people that you are not just ‘this’ or ‘that’. In my own case, I’m not just a mother, my husband is not just a farmer, my friend is not just a professor, my mother is not just a primary school

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teacher. All of these people have various illnesses, but they are not just people with those illnesses. People with Alzheimer’s Disease are not just people with Alzheimer’s Disease and yet not only are they boxed in to this definition of who they are — these prescribed selfhoods (and I talk more about this later) — they are also bound up into a category of humanness which is one step away from the final box of the coffin. They are, to use Foucault’s expression, ‘branded’ as objects. If the idea of place means more than a physical geography, or even a dream geography such as David’s, it also entails what could be thought of as a social geography — the way in which we are positioned socially in institutionally prescribed ways. There are all sorts of institutions that we are all part of — work, family and even sport are institutions in which we are often labelled as this or that. Position — social position — is allimportant in the storying by people with Alzheimer ’s Disease. Where such storytellers are in the specific kind of social hierarchy of a nursing home determines how their stories are received. In nursing homes, patients are continually repositioned physically — shifted in their chairs, turned from side to side in their beds. This ‘ repositioning’ is analogous to the way they are repositioned socially when they are diagnosed, classified, case-studied and treated. The name ‘Alzheimer’s Disease’ alone denotes a specific and irrevocable social position — a brand. It isn’t just the verbal impairment described by Davis in the epigraph to this chapter that causes social isolation for

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people with Alzheimer’s Disease. My initial attitude as a nurse to such patients often had nothing to do with their ability to converse because, regardless of this, I had an already-there reluctance to take them as seriously as I would take another sort of patient. It wasn’t even a reluctance really; it was more a disregard, which I now see was shaped and fed by the discourse of medicine. By ‘discourse’ I mean all the things that are said, perpetuated and believed about a particular subject and which, t o g e t h e r, form a body of knowledge. Foucault’s work which examines, amongst other things, power relationships, elaborates this idea of discourse. 2 In my experience, all aged people who are institutionalised are ‘placed,’ but for people with Alzheimer’s Disease it is much worse as they are relegated to the small dark space of ‘not all there’ and, thus, isolated from the rest of the patient population. That is, there is a rigid delineation of particular ‘places’ in the social hierarchy of the nursing home for people defined according to their particular disease. Joe was often taken out of the dayroom and put into his bedroom if he became noisy. Before the Joe Story this would happen because of his habit of yelling abuse, but even subsequently this would happen because of his habit of singing ‘Goodnight Irene’ very loudly. And this sort of ‘punishment’, not unlike the kind of punishment little children might receive, was inflicted on many patients with Alzheimer’s Disease who would often be wheeled into their rooms to yell and sing as much as they wanted. Often the door was closed, so they would be shut

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in, facing the opposite wall, trapped in their wheelchairs. Often, too, they would gradually become silent, maybe cry, maybe struggle, maybe even fall asleep in their chairs and be forgotten until one or another nurse suddenly realised with a shock, ‘Oh my God, I forgot all about Joe!’ Patients without Alzheimer’s Disease are rarely treated in this way no matter how noisy they become — and this includes outbursts of temper, loud hilarious conversations with each other and so on. The kind of noise they make is just as disruptive to those other patients (including many with Alzheimer’s Disease) who just want a bit of peace and quiet or to hear the television, as the noise people like Joe make. But it is more socially acceptable. Also, you can’t shove people who have all their wits about them into their rooms: if nurses did this there would be an outcry. If this happened to a patient without Alzheimer’s Disease that patient would complain to someone and it would be reported. But people with Alzheimer’s Disease are prevented from ‘telling’ because even if they do try to complain, their complaints are treated with the same amount of seriousness as those of a two-year-old child who ‘doesn’t know what she’s talking about’, ‘is being stubborn’ or ‘just wants to get his own way’. Partly this is because what medicine says about A l z h e i m e r ’s Disease infiltrates the way people think about the condition — a condition that until re c e n t l y didn’t even have a name. Various assumptions take root and begin to govern behaviour. If an elderly person’s memory begins to fail, it is often the case that those close to the person are able to form an hypothesis (‘uh-oh, he’s

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getting senile’ or ‘she’s getting Alzheimer’s’) without seeing a doctor. Similarly, if an elderly person is diagnosed with Alzheimer’s Disease, carers may feel that they know what will happen next in a doomsday kind of way. This is because knowledge about the disease and its repercussions is widespread, mediated through feature articles, television, pamphlets and support organisations. In fact, there is such a proliferation of information that it is possible for most of us to acquire what has become ‘common knowledge’ without ever referring to a medical journal. It is good and useful to have such information so readily available; it names what is difficult and painful and provides useful advice in the care of people with Alzheimer’s Disease and in accessing institutional help for such care. But at the same time, such institutionalised and generalised knowledge can hinder or even prevent caring, in that it does not leave much space for anything but a pessimistic approach. A repercussion of this is that people with the disease often lose their usual social status and become something other, something else. Studies of language functioning in patients with Alzheimer’s Disease are an example of such categorisation. In one such study, the speech patterns of twenty-five patients — assessing fluency, repetition, comprehension, word recognition, object naming, sentence completion and responsive speech — were examined. These analyses revealed all sorts of interesting linguistic deviancies, but what any patient actually said was not documented.3 In another study of language disintegration in people with dementia, an appendix of representative speech samples

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was included. But, like the first study, this one concluded with observations about dementia as a cause of various kinds of language dysfunction.4 In both studies, little or no consideration was given to the cir c u m s t a n t i a l conditions, the contexts, of what was examined. So the people with Alzheimer’s Disease themselves, and what they said, was not recognised as being of any importance except to illustrate this dysfunction. The style of speech, not the content (or what that content might mean or indicate in terms of personality, history, social roles), was all that mattered in these studies. Thus, people with Alzheimer’s Disease ceased to exist except as sufferers of A l z h e i m e r’s Disease, except as objects of a particular medical discourse. People with Alzheimer’s Disease, thus positioned, are often unable to speak through, or within, the medical discourse which defines who they are. This is especially the case when they are institutionalised. What patients actually say about who they are is often excluded as extraneous and irrelevant. Victoria Cotrell and Richard Schulz argue that current ‘care strategies’ characteristically ignore the patient’s perspective. 5 For instance, medical professionals may meet regularly to discuss a particular patient’s ‘case’ and yet the patient and his or her opinions — his or her stories — are rarely included in these conferences. Kathryn Hunter describes the transition of patient to ‘case’ as an act of imperialism. 6 Jaber Gubrium and J Brandon Wallace illustrate her point when they describe a typical nursing home situation in which the daughter of an elderly patient discusses the

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patient’s daily regimen with a social worker and a nursing home activity therapist. The patient had told his daughter that he was forced to participate in activities when he just wanted to be left alone. The daughter argued his case intelligently and tactfully but her success was minimal.7 What is striking about this example is that the patient himself was not included in the meeting. This was not seen to be unusual by any of those discussing his ‘case’; neither was it seen to be unusual by Gubrium and Wallace (whose article is about the theorising of ageing). This is because it is not unusual. It is common practice to exclude patients, especially aged patients, from meetings about what might or might not be ‘good’ for them. Patients with Alzheimer’s Disease are even less likely to be asked their opinion of things than the elderly gentleman mentioned above. So their storying is even further removed from the discourse into which they are thrust. What they say can have nothing to do with what is said about them, even though it is what is said about them that, quite literally, dictates how the space of the institution functions around them and how they are positioned, or stuck — and consequently treated — within it. But it is not simply the combination of age and dementia which places people with Alzheimer’s Disease in socially powerless positions. Another reason that they are positioned at the bottom of the illness hierarchy is that this disease is believed to be incurable and terminal. Age, dementia and incurability together form an unspeakable

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affront to western society with its vision and illusion of youth and vigour as normal. People with Alzheimer ’s Disease are rarely mentioned in new, innovative programs because they are expected to deteriorate even if therapy is attempted. As the The Merck Manual states: Alzheimer’s Disease is a ‘progressive’ and ‘inexorable’ c o n d i t i o n . 8 The value of patients with Alzheimer ’ s Disease to medicine, with its normative emphasis on cure rather than care, is nullified or at least nuanced by the perception of their incurability. This is why people like Fiona, though they may no longer be hidden away, are still unheard or ignored, even by those who do ‘care’ for them. When I first knew Fiona she would scramble around the bed, struggling with the sheet that tied her in and with the rails that prevented her from falling out, shouting out in what seemed like a crazy way, ‘I’ll kill you, I’ll kill you!’ She had terminal cancer and was always in pain, but had been so long in pain that nobody noticed. Her pain was considered troublesome and her continual shouting more a symptom of Alzheimer ’ s Disease than the cancer. ‘Help me!’ she would scream. She was ordered morphine four hourly but it was not enough. It would quieten her for two hours and the remaining two were a frenzy of rage and fear. Her doctor had been asked to increase the dose or, at least, the frequency of the dose. He refused, saying that any more would kill her and that, in any case, in his considered opinion, it was enough. She was nearly eighty, and over the past ten years she had suffered, conquered, and suffered again, the spreading of

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stomach cancer, and had woken up from her second lot of surgery exhibiting signs of Alzheimer’s Disease. It was then that she was placed in the nursing home. One evening, during one of these attacks, Fiona grabbed my hand, gabbling frantically, her wor d s indistinguishable, but I could see that she was in severe pain. Knowing it was useless — she wasn’t due for an injection for another two and a half hours — I nevertheless went to get the sister in charge. When we entered Fiona’s room, she was thrashing about the bed and the sheet which restrained her had come untied. The sister said, ‘Fiona, stop this nonsense, now just tell us what’s wrong.’ Fiona continued to gabble, her eyes getting wider and wider. She fought us as we retied the sheet. After she was again secured, the sister softened and said, ‘We’ll get you something soon, dear,’ and that was that. Fiona continued to scream out for the remainder of my shift. When I asked the sister to ring the doctor, she said, ‘Look, nurse, you know the orders, now just leave it.’ When I came on duty the next morning, Fiona was dead. Once people with Alzheimer’s Disease become patients with Alzheimer’s Disease, it is not simply their disease that disadvantages them but their new status as patients. John Wiltshire’s essay, ‘The Patient Writes Back’, looks at the ways in which all patients have been positioned in the history of western medicine: ‘In relation to the grand narrative of medicine’s conquest of the body they are insignificant, and their words are scarcely heard at all’

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because they are denied ‘the right to speak within its narrative.’9 He goes on to describe how, within various medical institutions, the patient ‘is silenced: her speech is not responded to, is disr e g a rded … the patient’s subjectivity or personhood is obliterated, reduced to the status of an anonymous, replicable object … the body is regarded as primarily physiological — as far as possible separated from the patient’s psychological life.’10 And in his article, ‘The Discourses of Literature and Medicine: Theory and Practice’, G S Rousseau remarks, ‘The patient as author has no historicity; his identity has har d l y reached the stage of the “subject”’11 — a ‘stage’ that could be described as selfhood — being able to identity as a self, an individual, a human being. As Wiltshire’s essay indicates, it is not that patients haven’t ‘spoken back’ in whatever way they can. Many people have written about their experiences of being ‘the patient’. In fact, he points out, this narrativisation — this storying — of the patient’s experience by the patient is one of the most powerful means by which patients can recover a sense of themselves as legitimate selves rather than medicalised objects. He compares the ‘rational’ medical narratives to the ‘passionate’ patient narratives — passionate if only (but not only, I would argue) because ‘the crisis that makes a person a patient tends to evoke primitive, infantile emotions, both libidinal and a g g re s s i v e . ’12 This emotion is exemplified in patient behaviour and speech which hits back at the medical staff. Such hitting back is evident also in the storying by patients with Alzheimer’s Disease because, however

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much shaped by disease, this storying is also a passionate response to, and an articulation of, as Wiltshire puts it, ‘pain, fear, dependency and medical intervention.’13 My point is that people with Alzheimer’s Disease who are institutionalised are doubly disadvantaged by the ‘thing-like’ status of patient which is constructed in and through medicine: they are objects of this discourse and they are radically objectified, branded and dehumanised by the concepts and themes of all its talk about Alzheimer’s Disease. The selfhood or personhood of the person afflicted with Alzheimer’s Disease not only collapses into patienthood as soon as they enter the nursing home, it is also conflated, or equated, with mental incapacity, dying and death. In my opinion, this adds to and exacerbates the problems of the disease. For instance, an immediate repercussion of their new status is that, instead of speaking to family members, they now speak to a conglomerate of medical practitioners and against a wall of medical knowledge and practice. For people with Alzheimer’s Disease who are still able to speak, to tell stories, to communicate, this wall soon silences them. Anything they have to say is unheard: the fact that they a re patients is enough to do this; that they also have A l z h e i m e r ’s Disease is more than enough. Speaking becomes screaming; screaming becomes gabbling; gabbling becomes moaning; moaning becomes silence. The disease itself effects these transitions. But the experience of becoming an Alzheimer’s patient, and all that this entails, sharply intensifies and accelerates the process.

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Even in the valuable work which attempts to embody the experience of people with Alzheimer’s Disease, those who actually have the disease are rarely heard or represented in a way which acknowledges that they may have something to say. For instance, in When I Grow Too Old to Dr e a m, a collection of twelve stories about Alzheimer’s Disease edited by Gerry Naughtin and Terry Laidler, only one is told by a person with Alzheimer ’s D i s e a s e .14 The rest are told by carers. This book gives useful insights into the condition and ways of coping with it, especially if you are a carer, but what is missing is a more direct representation of how it feels by the person who is cared for. Similarly, in ‘Incommunicables and Poetic Documentation in the Alzheimer’s Disease Experience’ by Gubrium, it is argued that poetry is a way of expressing the personal experience of the person with Alzheimer’s Disease — and yet all the poems cited and discussed are written by nurses or carers.15 Many of the story fragments told to me by people with Alzheimer ’s Disease seemed to me just as poetic, just as poignant and just as revealing of the situation for both carer and sufferer, and it would be valuable if these were included in such literature. These are just two examples of a growing body of literature about the Alzheimer’s Disease experience which attempts to give voice to those who have the disease but which, no matter how empathetic, does not, for the most part, let ‘them’ speak for themselves. Some of the poems in the Gubrium article, for instance, are by carers who attempt to identify with those they care f o r. Gubrium remarks, ‘It is believed that the poems

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provide a glimpse of facets of experience which no words can express: the heart and love of the patient.’16 What I find difficult about this sort of approach is that I do not believe that ‘we’ can speak for ‘them’ and any attempt to do so is to silence ‘them’ even further. I find even the title of Naughtin and Laidler’s When I Grow Too Old to Dream objectionable in that the editors have taken ownership of an ‘I’ which doesn’t belong to them. I also find it strange because much of the storying by people with Alzheimer’s Disease that I have heard is full of dreams. The title itself, in not recognising this, discounts the storying by people with Alzheimer’s Disease as irrational, marginal, outside day to day conversation, outside ‘normal’ discourse. I am not saying that there is anything wrong with empathy. The kind of empathy expressed in the stories and poems cited in these and similar texts is extremely valuable, but the point too often missed is that the experience of caring for and being close to a person with Alzheimer’s Disease is not the same as the experience of having Alzheimer’s Disease. Speeches, poems and stories about what it might be like to have this disease have become abundant in the nursing, medical, and general literature and yet it is almost impossible to find articles in which the actual dialogue of patients, even paraphrased, is feature d (Crisp’s work is an exception). At a conference held in Wellington, New Zealand, in July 1996, entitled Health in the Wr i t e r’s Hand, the current move to humanise the medical and nursing sciences was a predominant theme in papers describing how nursing and medical students

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are now being encouraged to become ‘literary’ — to not only read fiction and poetry but to write it. This kind of p rogram is intended to foster a more empathetic approach. Although this is obviously a positive move, if the objective is to understand the patient’s position more fully, then, in my view, the patient’s actual speech needs to be heard and r e c o rded — at the least listened to. Otherwise the position of people with Alzheimer ’ s Disease remains ‘unspeakable’. T h e re are imaginable alternatives to speaking f o r people with Alzheimer’s Disease. Dr Robin Philipp, D i rector of the World Health Or g a n i s a t i o n ’ s Collaborative Centre for Environmental Health Promotion and Ecology in England, has taken the current trend to humanise medical practice through the use of literature a step further by advocating the use of poetry in clinical practice. In his paper ‘Poetry and the Art of Medicine’ he speaks enthusiastically about how healing has been accelerated in patients with psycho-neurotic disorders and mental health problems such as anxiety, depression, post-traumatic stress, eating disorders and sexual abuse, through a program which encourages them to write. 1 7 Philipp suggested to me that it might be possible to use ‘poetry therapy’ with Alzheimer ’ s sufferers. Patients could be encouraged to write or at least dictate their thoughts. Obviously such a program would re q u i re the employment of extra staff. Putting the practical arrangements aside, it seems a viable and p referable alternative to nurses or carers speaking f o r patients with this condition. Philipp’s ideas, which he

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admits are at the inception stage, are exciting in that patients would be able to speak for themselves to medical professionals repositioned in such a way as to listen. To my knowledge, nothing like this is happening yet in Australia in actual nursing practice. And even if it were, it might be the case that only people who can get better, and for whom ‘healing’ is possible — not those afflicted with Alzheimer’s Disease — would be invited to speak in this way. P e rhaps my view is overly cynical. I do know of various individual projects in which the stories told by people with Alzheimer’s Disease are being focused on in an attempt to re-legitimise their social positions as well as to bring together social histories. And I know that the work of Naomi Feil (discussed in more detail in later chapters), which puts forward a therapeutic strategy called ‘Validation’ that advocates listening as an effective ‘treatment’ for people with dementia, has had a great impact on occupational therapy.18 Nevertheless, I’m still a little cynical, probably due to my past experience in nursing homes and to close contact with nurses still working in the field. It is true that alternative theories and p rograms have been proposed, but in terms of institutional practice little seems to have changed. For instance, in a recent conversation with a friend still working in the nursing home where Joe lived, I asked ‘How’s work?’ and she responded, ‘It’s still the same loony bin.’ Inside the institution of the nursing home, the ‘loony’ status of people like Fiona can have tragic repercussions,

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not just in terms of unrecognised and often untreated physical pain, but because few people outside seem to realise that this sort of thing is happening and, even when it is talked about, it often seems that no one really cares. Once, after a terrible evening trying to make Fiona comfortable, I came off duty to meet some non-nursing friends. I was upset and told them how awful it was that Fiona wasn’t provided with enough pain relief because she wasn’t taken seriously. Until I mentioned Alzheimer’s Disease there were horrified protestations, and then afterwards, sighs of relief followed by such ‘reassurances’ as, ‘Oh, well, don’t worry, she doesn’t know what’s going on anyway.’ And when I said, ‘But she’s in pain,’ the response was, ‘Don’t worry so much, Julie; they don’t feel it.’ Not only are patients with Alzheimer’s Disease excluded from society but, even within the social hierarchy of the nursing home, they are ‘bottom rung’ patients. So much so that J Grimley-Evans is quite open about the fact that ‘health care workers may make unjustified assumptions, for example that older patients are necessarily demented’ and that, therefore, the level of care is immediately diminished. 19 And T Wetle sees even the possibility of dementia being a risk factor in the treatment of elderly patients, the implication being that people with dementias such as Alzheimer’s Disease are inadequately treated.20 It is obvious that the social status of the patient with Alzheimer’s Disease suffers a double b l o w. Institutionalisation is the first; then, inside the institution, the second blow — a social hierarchy which

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places them at the bottom. Lynne Marzinski’s article, ‘The Tragedy of Dementia: Clinically Assessing Pain in the Confused, Nonverbal Elderly’ is a perceptive and compassionate examination of different body languages which express pain and how these messages might be picked up by nurses. She warns that in those patients with conditions like Alzheimer ’s Disease, ‘pain may be dismissed as expected and therefore poorly managed.’ 21 Worse still, she says, ‘most studies concerning pain assessment and management do not focus on the elderly, nor do they include confused elderly.’22 Not only was Fiona ignored but it was felt that she was not really ‘in that much pain’, and, even if she were, it was to be expected. N Wachter-Shikora and S Perez point out that those who cannot adequately express themselves (I would say, express themselves in a ‘normal’ manner) may not only be undertreated but totally ignored.23 Even the medicalised definition of pain is one which excludes people with Alzheimer’s Disease and those with other types of dementia. M McCaff e r y, for instance, defines pain as ‘whatever the patient says it is and occurs whenever the patient says it does.’24 But what happens when a patient is too confused to express his or her experience of pain in ‘normal’ ways, or perhaps even to understand pain in the ‘normal’ way? What happens when a patient has lost the ability to speak at all? When that happens, then even McCaffery’s patient-oriented definition means the patient is not in pain. Like Marzinski, Mari Anne Bartol emphasises that there is a need to study the nonverbal (and, I would add,

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the confused verbal) communication of patients in order to determine their needs.25 Bartol recognised this in 1979 and yet, in 1992, Fiona screamed and verbalised her pain and was still ignored. Other patients might moan softly or else writhe silently in their beds, probably in a great deal of pain. But, in my experience, unless they were capable of asking for pain relief, or of expressing their pain verbally and coherently — ‘normally’ — they too were ignored in this respect. Fiona was not the only patient who I watched die slowly and in such a manner. For some patients with Alzheimer’s Disease this kind of suffering is accepted, even expected by those who care for them. If people like Fiona were out in public screaming their pain, they would not be ignored. In the nursing home, however, Fiona’s screams were treated as ‘misbehaviour’. She was disruptive, irritating and — most of all — she was demented. She didn’t really matter. In Discipline and Punish Foucault talks about how, alongside surveillance, or panopticism, normalisation became ‘one of the great instruments of power’ towards the end of the classical age. He goes on to say that the establishment of the ‘norm’ was vital to how discipline and order worked in institutions like hospitals, schools and prisons. The aim was to ensure that every individual conformed to an idea of normality. People were expected to behave normally, or ‘properly’. If they didn’t, they were excluded in some fashion. Normalisation has meant the inevitable emergence of what Foucault calls ‘dividing practices’ which categorise some people as normal and others as abnormal. One of Foucault’s major themes is

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that the emergence of various institutions is inextricably connected with the development of discourses in which these dividing practices put walls between the mad and the sane, the sick and the healthy, the ‘bad’ and the ‘good’. Foucault points that these dividing practices have made possible a strange thing: that we humans have become both subjects and objects of knowledge. In other words, not only do we categorise ourselves and others, we are categorisable and ther e f o re categorised — branded.26 But how do humans become objects? How do people with Alzheimer’s Disease lose their foothold as ‘subjects’ (the current theoretical term for selves) so dramatically once they are placed in nursing homes — once they become enmeshed in the discourse of medicine? Why do their stories, and even their screams, go unheard? In Discipline and Punish Foucault talks about how control is exercised through these ‘binary’ divisions between mad and sane; between dangerous and harmless; between normal and abnormal — in other words, through the practice of exclusion which is, he points out, a legacy of early techniques of managing lepro s y. 27 In an earlier work, Mental Illness and Psychology, he says, ‘Every society is conscious of certain aspects in the behaviour and speech of some people which separates them from other people. These people are treated not quite as ordinary people, ill people, criminals or sorcerers.’28 But it is only when people with Alzheimer’s Disease are actually diagnosed that they are excluded. That the name A l z h e i m e r ’s Disease now denotes the classification

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‘abnormal’ means that such people are positioned on the outskirts of the medical discourse which has m u l t i p l y objectified them. They are old, ill, demented, incurable, not ‘normal’. Their storying is, therefore, generated by this abnormal position — a non-speaking position — which has been established for them. This social position becomes part of those circumstances through which their stories battle to be heard. When I came on duty one afternoon I was told that I would have to shower Greg, as he had made such a fuss in the morning that the nurse had given up. In fact the nurse had eventually succeeded in giving Greg a shower but had forgotten to record it on his chart. When I approached him with a towel and his toilet bag he immediately began to shriek at me, ‘I’ve had a bloody shower, you fool!’ But I had my orders and it never occurred to me to believe his story over the sister’s — he had Alzheimer’s Disease and, in any case, he hated the shower. What followed was an unpleasant half-hour of his shouting and my coercing and finally it was done. Some of the nurses, laughing later about all the yelling they’d heard coming from the bathroom, said things like, ‘He’s bloody stubborn that one,’ and ‘He’s really lost his marbles.’ It was only later that I discovered my mistake. After I’d apologised to him, one of the nurses said, ‘I don’t know why you bothered. He doesn’t know what day it is.’ Foucault emphasises that we are all caught up in discourses that control our lives by their use of the powerful and insidious disciplines of surveillance, normalisation, branding and exclusion. People with

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Alzheimer’s Disease are, in effect, further disabled by the fact that once institutionalised they are literally trapped both physically and socially because of how they are labelled and thereby excluded. But, in The History of Sexuality, Foucault also mentions that it is possible for those who are excluded to form a ‘reverse discourse’ by speaking on their own behalf and by demanding, however futilely, that their ‘legitimacy’ — their selfhood — be acknowledged. 2 9 This is not to say that the discourses which marginalise homosexuals (to cite Foucault’s example), criminals, women, children, the aged, the sick and the demented can be overthrown, but rather that these same discourses can be challenged from within. What Foucault is getting at here is that even if you a re, to all intents and purposes, trapped in an e n v i ronment from which, and in which, you ar e n ’ t acknowledged as having any autonomy or personality or anything legitimate to say about yourself, this doesn’t mean you can’t speak out. And if you do speak out, maybe, just maybe, someone will hear you, take notice, see you differently from the way you’ve been seen before. This is what happened during the Joe Story because several of the nurses — not just me — noticed Joe, saw Joe in a new way, heard Joe. The storying by some people with Alzheimer’s Disease can be seen to be an example of a reverse discourse in the sense that it subverts the normalising powers of medicine. That their storying is contextualised by the institution, and by their position within the institution, is indisputable, and yet their storying can also manage to

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supersede this controlled environment and escape its strictures. For people with Alzheimer’s Disease this is not necessarily a conscious process. Nevertheless, their storying is subversive in that it often ignores the very rules which, paradoxically, cause it to proliferate. Their storying widens the parameters of the very institution which threatens to gag it, and ruptures the boundaries of institutional discourse in such a way as to allow new thoughts to enter and new positions to be formulated. For example, my experience with Joe: a nurse becomes i n t e rested in the stories told by a patient with A l z h e i m e r ’s Disease, and a subtle transformation of power relations occurs. The nurse suddenly sees the patient from a whole new perspective: ‘the patient’ has now become ‘the storyteller’. And good storytellers are far more socially acceptable than demented people. It gradually became obvious, for instance, that David (the farmer who was always trying to get home) knew that whatever he said would induce laughter — or at least a warm reaction and therefore approval — from the nurses. It seemed to me that he was making the most of this a b i l i t y. Once he’d received some attention, he would continue his walking, unperturbed, sometimes later repeating his request, sometimes forgetting all about it. He always walked with a kind of determination. David was never aimlessly strolling: he was always going somewhere with some purpose in mind. His stories about w h e re he was going, which were really stories about where he’d been, made him an interesting person to listen

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to, and broke the monotony, for him and the staff, of the daily routine. But, most importantly, they effected a change to his status. He gained a reputation with the staff for being a ‘lovely old man’ and ‘a character’ and this was specifically because of the stories he told about his daily destination — home. In The Practice of Everyday Life de Certeau discusses how the notion of the city as a central, uniform and regulated space (and he means ‘space’ in both a physical and social sense) is continually subverted by those who pose a threat to its stability — the ‘abnormal,’ the deviant and the ill. He speaks of ‘the walkers’ whose bodies follow the thicks and thins of an urban ‘text’ they write without being able to read it. These practitioners make use of spaces that cannot be seen; their knowledge of them is as blind as that of lovers in each o t h e r ’s arms. The paths that correspond in this intertwining, unrecognised poems in which each body is an element signed by many others, elude legibility.30 De Certeau’s description vividly conjures an image of ‘blind’ and unreadable bodies walking through the city, bodies who are an intrinsic part of the city and yet are, somehow, invisible. These ‘ordinary practitioners of the city,’ whose movement through the city fails to recognise the ‘story’ of the city to which they are supposed to belong, creates, instead, a sort of parallel, cr o s s purposeful ‘story’. De Certeau’s ‘walkers’ bear a striking resemblance to people like David who walk, and talk,

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t h rough institutions into which they are forced and become a part of and yet don’t quite ‘fit’. Their stories often consist of a bits-and-pieces, tangential mesh: a fluctuation between ‘where am I?’ and ‘here I am’. People with Alzheimer’s Disease cannot literally reject the nursing home space but they can defuse or refuse it by using their surroundings to imaginatively reconjure other spaces for themselves. And they do this by storying. In de Certeau’s study of marginal groups and everyday practices, he points out that the spaces produced and inhabited by dominant groups are often subverted from within by those they are supposed to assimilate. The way in which the conquered make use of, or ‘consume’, these spaces is not, he says, ‘by rejecting or altering them, but by using them with respect to ends and references foreign to the system they had no choice but to accept.’31 One of the examples he uses is of the Spanish colonisation of the Indians: They were o t h e r within the very colonisation that outwardly assimilated them; their use of the dominant social order deflected its power, which they lacked the means to challenge; they escaped it without leaving it. The s t rength of their difference lay in pr o c e d u res of ‘consumption’.32 The act of storying, then, can be seen to be a kind of consumption of the social space. De Certeau points out that this is what happens in our societies when the culture which is imposed on the ‘common people’ by ‘elites’ who

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produce the language is made use of in unexpected ways. He goes on to say that ‘users make innumerable and infinitesimal transformations of and within the dominant cultural economy in order to adapt it to their own interests and their own rules.’33 In a nursing home the patients are expected to shower, eat, toilet and sleep with precision. And not to story. There is no place for the time-wasting interruption of storying in a job that allots particular routines to particular hours of the day so that the whole day is taken up with them. In my experience, the routines of showering, toiletting, feeding and ‘the round’ are repeated shift after shift with hardly a blink of change or innovation. Distracting stories are brushed aside in the rush to ‘get things done’, ‘be on time’ and to write ‘ reports’. Talkative patients are often simply ignore d . Jenny, who desperately wanted to share her stories with someone (she would often grab the arm of the closest nurse in an effort to get someone to listen), was avoided as much as possible. She was often referred to as ‘the rambler’. In the face of all this massive, confusion-making discipline and control, storying forms a kind of resistance for people with Alzheimer’s Disease. Their stories pose a threat to the disciplined space and disciplined time of the nursing home in that any storying between nurses and patients is seen as extracurricular, not to be done during hours of duty. But their stories are subversive in three significant ways. F i r s t l y, their storying becomes a way of refusing to

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‘make themselves at home’ within the context of the nursing home, despite their cooperation with its routines. This may not be the intention but it is certainly the effect, and can be seen in a story’s ability to imaginatively evoke other places in which a nursing home patient feels more comfortable, and/or to reconjure a real home (or homes) of the past which the institution cannot access or control. (This is exactly what David did when he re-imagined the nursing home environment as his past home on the farm. He re-storied his circumstances in such a way that he both accepted and rejected them.) Secondly, such storying becomes a way of subverting the role of patient which the institution imposes, and all that this implies, and of maintaining something of who the storyteller is and was outside the institution. Joe and other patients often persisted in verbalising their lives, memories and feelings in ‘larger than life’ ways — noisily storying into, or even at, the nursing home’s rules and routines. As my relationship with Joe developed, his constant singing of ‘Goodnight Irene’ — and he had a wonderful voice — became his way of asserting himself as Joe the singer (rather than Joe the diseased). He’d often enliven the whole dayroom, causing other patients to either join in or giggle, ultimately creating such disarray that even the nursing staff entered into the fun of it. The third way that storying by patients with Alzheimer’s Disease can be subversive is that it may, in turn, become an invitation to the nurses and other staff, who are also subjects, as it were, of the institution, to perform in ways that are not prescribed. In other words,

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the stories told by people with Alzheimer’s Disease often ‘work’ insofar as they do manage to catch the nurses by surprise and constitute a reminder to them that within each patient lies an individual, a personality, a history. As a nurse, I was caught up in some of these stories, and so, too, was able to ‘escape’ the institution even as I was still firmly placed within it. De Certeau describes this kind of manoeuvre as a tactic. ‘The space of a tactic,’ he says, ‘is the space of the other … in short, a tactic is an art of the weak.’ 34 That people with Alzheimer’s Disease speak from the combined contexts of then and now, that they find their present circumstances, in many ways, unassimilable and that they themselves remain other in the institution — all this means that their storying issues from a kind of ‘noplace.’ And yet it insinuates itself from this ‘noplace’ into their immediate environment in a way that has an effect on that environment — by masking it, by making people listen, by changing attitudes, and so forth. A tactic, de Certeau says, takes from the imposed environment fragments of its discourse ‘in order to compose new stories with them.’ A tactic ‘poaches’, it ‘creates surprises’ and it seizes ‘on the wing’ those opportunites, those ‘chance offerings of the moment’, and makes use of these moments to alter situations.35 My surprised response, and subsequent listening attitude, to the storying by people with Alzheimer’s Disease was due to their tactical quality. The more I listened, the cleverer and more innovative these storytellers became, and the more I listened. Henry was unable to move. Emaciated, he lay in the

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small pools of urine or faeces that his body was still able to produce until the nurses came to change the drawsheet and lift him onto his other side. His body was covered in taped-up skin tears because the slightest touch broke the skin. The bedsores on his hips were always open and suppurating despite attempts to turn him two hourly. He was dying and had been dying for a long time. And he had Alzheimer’s Disease. But Henry could talk. In fact he talked almost continually, though he never opened his eyes. When we were attending to him, he would attempt to engage our attention by saying, ‘I say, Frank,’ or, ‘I say, Elsie, are you listening? You must pay heed, my dear fellow, because this is the interesting part.’ Sometimes his hands would reach out feebly for us, as we washed and repositioned him. He spoke eloquently, and with a ‘best of British’ accent, about how he had discovered a particular mathematical equation, about how he had climbed Mount Everest, about how his second daughter had been born handicapped. He spoke as if he were giving a report — everything was explained in intricate detail and it was difficult not to ‘pay heed’ as Henry had a surprisingly loud voice considering the frailness of his condition. I remember the first time I heard Henry storying; it came as a shock, and the nurse with whom I was working laughed. ‘This one’s totally off his rocker,’ she said. At this, Henry ceased his monologue and ‘looked’ blindly around him. But, as we took our linen trolley on to the next bedroom, I heard him resume. ‘As I was saying,’ he began. Jane Crisp, whose mother had Alzheimer’s Disease,

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argues convincingly that the ‘confabulations’ characteristic of people with Alzheimer’s Disease could be reconsidered as narrative: By thinking of people like my mother as story-tellers, we can start to see them as performing a socially valid role rather than as simply being confused or mistaken about the facts; and we can also start to make better sense both of what they are doing and of the stories that they tell us. If we stick with the closeness to reality as our primary criterion, however, we handicap the story-teller from the start and deprive ourselves of anything but a negative response to them.36 But it is not simply a ‘closeness to reality’ experience which prevents a positive response to the storying by people with Alzheimer’s Disease. It is also the way those who care for them — often nurses — are positioned. It would be interesting, I remember thinking, to sit with Henry for awhile and listen to his stories. But of course this was out of the question; not only did the usual routine and the rush disallow this kind of thing, but his stories were felt to be invalid — nonsense. I did sneak back once, during the nurse’s morning tea, but was spotted by another nurse who asked, ‘What the hell are you doing? It’s smoko.’ The Joe Story was something which I initially shared enthusiastically with various nurses with whom I worked. But after awhile I learned to keep my thoughts to myself, and my interest in these stories became a kind of

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secret, because it became obvious that such an interest was, somehow, ‘not done’; it was quite literally beyond the call of duty and seen to be strange. Participation in this kind of storying by nurses poses a threat to the ‘ o rd e r ’ of the ‘system’. I began to feel intimidated by nurses who seemed almost affronted by my sometimes unnurselike approach to patients with Alzheimer ’ s Disease. It was almost as if socialising ‘too much’ with these patients was not only a waste of time, it was a breach of professional protocol. The position in which nurses are placed can be very difficult in all sorts of ways. In my experience, it was commonly held that fledgling nurses were never ‘any good’ until they were able to ‘harden’ themselves, to o v e rcome feelings of sympathy for or empathy with patients, to achieve an efficiency which was devoid of emotion and to treat patients as patients and not as individuals. Thus the dehumanising practices in institutions like nursing homes have a ricochet effect on the very people who are called carers — the nurses. After a while it became difficult for me to avoid putting on the nurse facade when beginning a shift. On entering the institution I often felt compelled to act out the nurse’s role and to treat patients in an impersonal manner. Sometimes I felt as if I were acting a part in a play and that any mistakes would not be forgiven easily. So I would do my ad-libbing in secret, snatching conversations with patients while tucking them in to bed and so on. I am angry with myself, when I look back, at the way in which I allowed the very techniques of surveillance and

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discipline that I was so critical of when applied to the patients, to control me in much the same way. I have since realised that I too was simply a cog in the machinery of the system and, as such, I did become efficient and, to a certain extent, ‘hardened’. But not entirely. I was fearful as well. So those moments of snatched storying with Joe, David, Fiona and even the disgruntled Greg, took on a kind of exciting subversiveness; gleeful even; secre t ; illegitimate whisperings. I am not saying that all nurses in all nursing homes have the kind of attitudes described above. But I am saying that in my ten years of nursing, this was not the first time I felt boxed in by a system which avoided anything new or different; which preferred the status quo; which relied on scientific assessments and the subsequent rules and roles being played out ‘properly’. When Norm, a patient with a diagnosis of Alzheimer’s Disease printed on his file, was admitted to the nursing home it came as an unwelcome surprise to the staff to find, over the ensuing days, that he was mostly lucid, sensible and, c o n s e q u e n t l y, demanding. His endless but justified complaints and requests were irritating for the nurses. He wasn’t supposed to be so lucid. Just as we were expected to play the part of the efficient and impersonal nurses, so Norm was expected to play the part of the dementing, docile patient. Despite my fascination at the time, it is mainly in retrospect that I appreciate the storying by patients with Alzheimer’s Disease since it was impossible to listen for long when I was a nurse. There was no time. And it was

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impossible to value these stories because there was no ‘space’ in the system for such seemingly wasted time. Sitting down on the side of someone’s bed to listen to what they had to say was ‘not done’ except perhaps in the last five minutes of a shift when there might be nothing else to do; such attempts to story were not worth listening to. I do not believe that I could have said the things I am saying, or told the stories I am telling here, if I were still working as a nurse. That I am able to do so now is because I am no longer positioned, socially, as a nurse but as a writer. The interesting thing is that the stories I am telling are contextualised by both positions, one past, one present; one remembered and one experienced in a more immediate way. The nurse position made it impossible, or at least difficult, for me to speak about these things. Or, if I did, my words went unnoticed or ignored. The writer position allows me to speak and be heard about these matters. The parallel with the storying by those with Alzheimer’s Disease is unavoidably obvious — and so is the importance of social positioning — labelling, branding — when it comes to the everyday act of storying. It needs to be pointed out that it is not only people with Alzheimer’s Disease who are ‘placed’ in certain ways that make it either difficult to speak or, more poignantly, to be heard; not only people with Alzheimer’s Disease whose stories are contextualised and generated by the places and/or positions from which they might like to escape. We are all liable, to some extent, at one time or another, to finding ourselves beyond the pale, set outside walls

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which are constructed socioculturally and institutionally. Outside these ‘walls’ any storying we might engage in (however much produced in and from us by this very exclusion) is silenced by being disregarded because it is seen to be socially unacceptable, odd, not quite right — unspeakable and, even if spoken, unheard. One of the most fascinating aspects of much of the storying by the patients I knew who were afflicted with Alzheimer’s Disease was the way such ‘walls’ did not literally silence them. On the contrary, their stories p roliferated. And yet the act of storying, the stories themselves and, especially, the tellers were rar e l y acknowledged. This was because the storytellers were positioned as patients, and conflated with a disease. Thus positioned and erased, they were deemed unimportant, irrelevant as people.

‘I think this situation with Joe might be going too far, Julie,’ the sister in charge said to me one evening, in front of Joe. ‘Just try ignoring him.’

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3 Dark Spaces: Storying f rom Nowhere

It is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. Susan Sontag, Illness as Metaphor and AIDS and its Metaphors1

People with Alzheimer’s Disease are excluded; they speak from a kind of ‘nowhere’ that is, paradoxically, a very real ‘somewhere’. Why and how does this happen? And what are the re p e rcussions of exclusion for the people who are excluded? I think there is a certain amount of fear of, and revulsion for, people with Alzheimer’s Disease in our society because their storying is often seen to be extraordinary or weird. For the rest of us, it is not necessary to tell our everyday stories in a

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coherent, orderly fashion. We are ‘allowed’ to go off on a tangent, change the subject, digress. But when people with Alzheimer’s Disease story this way, it is seen to be an unacceptable breach of narrative protocol, even in the everyday sense. For example, if a patient with Alzheimer ’s Disease speaks of long ago in the present tense, the story is likely to seem nonsensical. It is seldom acknowledged that such apparent lack of spatio-temporal context is not only a characteristic of much ‘normal’ storying, but also might be as much an effect of institutionalisation as of disease, as much the effect of a practice of exclusion which catapults people with Alzheimer ’s Disease into situations and environments which are as unfamiliar to them as Alice’s Wonderland was to her. Psychoanalyst Julia Kristeva’s notion of the ‘abject’ (a psychoanalytic concept) 2 as something which is ambiguous or anomalous is useful in understanding why people with Alzheimer’s Disease, amongst others, are for much of the rest of society, unassimilable and frightening, and why such enormous social anxiety surr o u n d s society’s diseased generally, and this disease particularly. The abject is, in Kristeva’s words, what ‘lies there, quite close, but it cannot be assimilated.’ It is ‘death infecting life’; it is ‘immoral, sinister, scheming, shady’; it is ‘fear’; it is the ‘clean and pro p e r ’ having become ‘filthy’; it is desire and fascination turned upside down into shame and revulsion. She describes the abject as the borderline of selfhood; neither inside nor outside, the abject is a bodily interruption of stable selfhood. The abject, she says, is ‘opposed to I’, the social or socially acceptable self.3

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People with Alzheimer’s Disease who are institutionalised are mostly re g a rded as neither dead nor alive. Their behaviour is often seen to be disruptive, distasteful, ‘disgusting’. Thus they hover on culturally determined boundaries between what is and isn’t socially acceptable or ‘nice’, what is and isn’t assimilable, what is and isn’t ‘human’. They are Kristeva’s abject. Kristeva uses the powerful symbol of excrement — amongst others, like menstrual blood and bodily waste — to describe the ‘danger’ to identity and to society represented by what is ‘outside’. Excrement — and she includes its equivalents (‘decay, infection, disease, corpse’) — is symbolic of ‘the danger to identity that comes from without: the ego threatened by the non-ego, society threatened by its outside, life by death.’4 When the metaphor of dangerous excrement is related to people with Alzheimer’s Disease who are institutionalised, its very literalness helps to explain the horror of people with the disease that non-sufferers may feel; it helps to explain, as Kristeva puts it, the diseased’s ‘polluting value’. One man, in describing his wife’s condition to me, said, ‘It was like something horrible took her over.’ He found it difficult to come to terms with a wife who, previous to the disease, had been immaculately clean, and now was not only incontinent but made a mess with her own faeces. And, although nurses working in nursing homes get used to cleaning up excrement, it never loses its power to horrify. It may seem to stretch Kristeva’s own metaphor to speak of people with Alzheimer’s Disease as representative of the

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abject. But in my experience, people with Alzheimer ’ s Disease (who are usually, eventually, incontinent) are, after a while, equated with their excrement. ‘Toiletting’, which mostly consists of the cleaning up of excrement — from the floor, from bodies, from clothes, from beds — is the all-consuming task in any eight-hour nursing home shift. Disgust is often expressed by the nurses verbally and in front of the patients, and possibly imposes or reinforces in these patients a sense of shame or disgust in themselves. And yet, ironically, there is anxiety when patients haven’t used their bowels for a couple of days. Suppositories are given promptly and the result is not only r e c o rded on a chart but delivered verbally at handover. I was often struck by the fact that nothing else seemed to matter. The patients were identified according to their bowel motions. For example (during one handover): ‘Joe: hasn’t been for three days, supps please; Fre d : diarrhoea again (what the hell is he eating?), all over one of the chairs in the dayroom. Give him something for it will you; Buffy: toiletted successfully at exactly nine am, the program seems to be working; Henry: needs an enema but we can wait until tomorrow; Jane: might need to put pads on her, it’s a constant flow …’ No wonder the ‘I’ is lost. What is fascinating about this notion of the abject is that we are so afraid of its expression that we attempt to banish or suppress it in ourselves (in the same way that we do not defecate in public). We try very hard to be ‘normal’ and we hide our ‘abnormalities’. Society is afraid of those who don’t fit into the norm, whose behaviour

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seems excessive or strange, whose speech is peculiar, disjointed, too loud. Society is afraid of what it doesn’t understand or cannot contain. Society is afraid of loss of c o n t rol — of ‘hysteria’, madness and incontinence. Society is afraid of death. The concept of the abject embodies all these fears and more, and this is why people with Alzheimer’s Disease, who are abjected, pose such a threat to society. The notion of abjection, explains Judith Butler, ‘designates a degraded or cast out status within the terms of sociality.’5 Kristeva discusses in detail the mad, the holy and certain poets — all of whom, in her opinion, are to be celebrated — as exemplars of the abject or abjected. The i n t e resting thing is that each of these figures, with perhaps the exception of the ‘mad’ person, in some sense wittingly forfeits her or his ‘proper place’ in a society whose imperative is to normalise. Each becomes, for society, the personification or incarnation of society’s fears and horrors. But people with Alzheimer’s Disease exceed these Kristevan figures of the outcast whose value is that they express the excluded, the repressed. This is because they are perceived to be unwitting, incapable, uninspired, unholy: they do not serve society by expressing the abject, they threaten society by being made into the abject. So the storying by people with Alzheimer’s Disease is a storying which falls short — just as their bodies fall short — or else exceeds what is expected, what is the norm. Even more, it is a storying which is incomprehensible in terms of social and narrative conventions. Yet sometimes the storying I heard seemed a paradox of delight in, and

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rage against, the nursing home, family, life, death, self, others, everything and nothing. I found those patients who told the most bizarre and tangled stories, or who yelled the loudest, to be the most compelling in that they so successfully disrupted the daily humdrum of the nursing home routine. Until they were placed alone behind the closed doors of their bedrooms to speak or yell unheard and unseen, these patients could be described as lively and irrepressible disrupters. Their ‘verbal antics’ created daily commotions that not only irritated the staff and often frightened visitors away, but also excited the other patients and sometimes arrested the attention of staff. The category of madness has been replaced by the much more ‘civilised’ category of mental illness and some of Foucault’s work addresses this. But in my nursing experience, the term ‘mad’ is still applied to people with Alzheimer’s Disease in a way that dismisses what they might say. Yet the frequently uninhibited and often passionate vocal and behavioural expressions by people with Alzheimer’s Disease — of pain, of loneliness and confusion, and of aggression, joy and love — are perhaps better understood in terms of the more ancient notion of madness as holy, or Kristeva’s idea of madness as the abject, as the expression of a repressed humanness. Bill would frequently yell out, suddenly and with great alarm, ‘I’ve got no legs, I’ve got no legs!’ This was usually when he was trying, without success, to get up from his chair or to roll over in his bed. He would tell long tales about how he’d lost both his legs in a car accident years

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ago. He’d say that he was in hospital for months while the doctors tried to save his mangled legs but eventually gangrene set in and amputation became necessary. It was a terrible time for him. He complained about phantom pain and often asked for pain-killers. ‘Those legs — they still haunt me,’ he’d say. But even as he told these stories, he’d pat his knees and rub his thighs — emphasising his body. Bill had a whole repertoire of stories about different bits of his body that he would claim he’d lost. (Sometimes, for instance, he would be ‘blind’ or ‘deaf’.) He either couldn’t or wouldn’t use his perfectly good legs and arms in a cooperative way. Dressing him was a struggle as he would twist his head, arms and legs in the opposite direction to what was required. When we would go to change his sheets at night (and he would always shout, ‘That’s not mine — I’ve never pissed myself in my life!’), we’d ask him to roll to the left or the right but he’d always do the opposite, pushing against us, sometimes resisting with great force and all the while shouting, ‘I’ve got no legs, I’ve got no legs!’ at the top of his lungs. Bill’s storying was, and is, disconcerting in the sense that it draws dramatic attention to the fact that he seemed to genuinely feel the loss of his body to such an extent that he tried to explain this ‘theft’ in his own terms. Even though his stories were about missing pieces of his own b o d y, they were also, more pro f o u n d l y, stories about ownership — his ownership of his body (whether absent or present). His storying seemed, in more ways than one, a (re)writing of his body. He also seemed to take great delight in crying out,

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screaming incoherently at the nurses and kitchen staff especially, because his story theme was often his hunger. ‘Get me my dinner you fat-arsed bitch!’ he’d yell. ‘Don’t you answer back you, you … I knew someone like you once and I gave it to her fair in the face. Often. You know who she was? My wife, haha! Do you believe me? Watch out! GET ME MY DINNER!’ Bill told ‘crazy’ stories in a ‘crazy’ way, and was often put into his room until he calmed down. And yet on a one-to-one basis he was usually calm, lucid and interesting to talk with. His stories were always full of adventure and violence, always dramatically fanciful. It sometimes seemed to me that Bill knowingly used his abject behaviour — his rage, his ‘madness’ — as a kind of weapon against his disease and the institution, as a tool to get attention, and — even m o re — as a way of having fun. He seemed to enjoy frightening people with his roar; his eyes would always sparkle during these outbursts. In particular he seemed to relish reducing new nurses to tears. It seemed to me that Bill quite liked acting or being ‘mad’. Sometimes, in altercations with the staff, nurses would say things like, ‘You’re a loony, Bill; you should be in a straitjacket.’ At this, Bill would smile smugly, as if to say, ‘If you’re going to treat me like a loony, I’ll be as loony as I can.’ Bill’s behaviour suggests an attempt to reject the kind of social and physical position imposed on him. And, if this is so, then Bill’s storying can be seen to exemplify Kristeva’s notion of the abject as expression of all the re p ressed content that is useful to society. But Bill’s irrepressible storying wasn’t ever received as any such

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e x p ression. Positioned as a person with Alzheimer ’ s Disease, positioned on the extreme margins, the embodied abject, his storying was simply rejected. His storying, which fought to be heard from behind a discursive barrier that he didn’t understand or acknowledge, but may have sensed, was mostly ignored. Susan Sontag’s work helps to explain why this might be. She talks about how various illnesses, or diseases — tuberculosis, cancer and AIDS — have been invested with metaphorical meanings which preclude a more ‘truthful’ way of understanding them. Speaking from her own experience of cancer, she says that ‘illness is n o t a metaphor,’ but that it is impossible to be ill and avoid the various meanings which have been assigned to certain illnesses.6 Like AIDS, Alzheimer’s Disease has acquired social meanings which entail fear and disgust. This is partly due to the fact that AIDS and Alzheimer’s Disease (as well as many other diseases) are associated with the spilling of body fluids and the subsequent possibility of contamination. With these diseases, blood and urine become more than something natural which is unmentionable, they become the unnatural, revolting and risky. Whether the risk is of catching a disease or just being ‘dirtied’, the meaning is the same. I agree with Sontag, and believe that there are metaphors which help to displace the storying by the excluded and that Alzheimer’s Disease has become one such metaphor. It is not simply that the term ‘Alzheimer’s Disease’ has become a metaphor for some of society’s fears, but that the person with Alzheimer’s Disease has

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also become a ‘something’ which is not only real but metaphorical. I think this helps to explain why people with Alzheimer’s Disease begin to seem less real as people. Once they become carriers not simply of a disease but even more of a cultural metaphor, the details of their lives and personalities are gradually leached away, and the person comprised of these metaphors is no more than a cadaverous entity. Fear of the ‘unnatural’ — as well as of the unknown or unknowable — attaches itself to Alzheimer’s Disease — an object brought into being through medical discourse — in the form of a popular knowledge of the disease and its carriers. Thus medical and popular discourses synthesise in such a way that the disease functions as a metaphorisation of society’s fears. Take Nelly, for example, who would ‘play’ with her faeces during the night. One nurse said to me, while we gave her a wash, ‘She’s probably always been filthy. Do you know she used to be the cook h e re? Yuck!’ Thus Alzheimer’s Disease, and those it afflicts, often functions as a multiple representation of the unclean, the morally degraded, the incontinent, the uncivilised, the not fully human. Both disease and diseased are metaphors for society’s fears of what it perceives, what it knows to be socially or morally wrong. As Tony Broe points out, these fearfully constructed social meanings are also due to the fact that, in terms of medical diagnosis and treatment, much is still unknown about Alzheimer’s Disease. 7 For instance, it is still uncertain as to whether the brain deterioration which occurs is a cause or a result of the disease. Sontag talks

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about how before ‘the simple physical cause’ of tuberculosis was discovered, this disease was loaded with metaphorical meanings by medical and popular discourses of the time because of its mysterious nature.8 ‘TB,’ she says, ‘was thought to come from too much passion, afflicting the reckless and the sensual.’ She goes on to say that cancer, though it has lost some of its mystery, is still seen to be a ‘multi-determined’ disease, its causes often difficult to establish. As a result of this difficulty, ‘many people believe that cancer is a disease of i n s u fficient passion, afflicting those who are sexually re p ressed, inhibited, unspontaneous, incapable of expressing anger.’9 Diseases which can’t be ‘solved’ by medicine — and Alzheimer’s Disease remains one of these, despite nearly three decades of research — become particularly powerful metaphors in a society which craves scientific explanation rather than the kind of mystery which might hold society’s fears and horrors. Another reason that Alzheimer’s Disease — and its s u ff e rers — serves so well as a metaphor is that its symptoms include a loss of control over mind and body function. This is important in a society that values control, reason and youthful bodies. It is not only that Alzheimer’s Disease is terminal, but also that it impairs exactly those qualities our society most identifies with ‘humanness’ — lucidity, youth and beauty, continence and so on. Alzheimer’s Disease, then, doesn’t just ‘mean’ one thing. It forms a complex and often contradictory metaphor which ‘means’ all these sorts of fears. The metaphorical force of the object ‘Alzheimer’s Disease’ is

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that it functions as a representation of all those things which thr e a t e n society and the individual — the uncomfortable, the unknowable, the uncontrollable, the incurable, the indefinable, the terminal. Fear, then, is a major motivating factor in the practices which society exercises in order to keep the unfamiliar, the unpleasant and the uncontainable on the outskirts. The nursing home is one such outskirt, and within it the separation of those with Alzheimer’s Disease from the ‘normal’ elderly patients effects another. Not simply ‘othered’ and ‘abjected’, but ‘nobody-ed’, people with A l z h e i m e r ’s Disease cease, in a sense, to exist. They become, at the very least, dehumanised and invisible ‘its’, or, at the worst, a kind of horrifying ‘dark side’ — the u n d e r b e l l y, so to speak, of society and of the nursing home. Thus the metaphor of ‘Alzheimer’s Disease’ helps to explain the abject status of the people who suffer this disease. This status is further reinforced by images of the incapacitated aged seen on television and in life, which intensify the horror and fear of such diminished bodies, bodies which often seem too reduced in substance to matter anymore, bodies which are no longer perceived to be people. The bodies of many people with Alzheimer’s Disease — especially those who are in the last stages — are like bodies which have been beaten until they break apart. I am speaking partly literally and partly metaphorically. I have nursed patients who are nearly skeletons, with suppurating bedsores because there is so little flesh left; with skin bruised and torn like wet paper, bandaged with

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bandages which, when removed, sometimes tear the skin right off. But there is another kind of breaking apart which has to do with the fact that these bodies are no longer of any value to anyone. After all, they are dying bodies. They are not going to ‘get better’. They are useless bodies in that they are no longer part of a social network. They don’t even connect with others of their ‘kind’. People in the last stages of Alzheimer’s Disease begin to seem like inanimate objects rather than living, breathing, thinking, feeling bodies. This is because, bit by bit, all that was inscribed in these bodies is erased. As soon as old people, and especially those with dementia, are seen to be socially worthless (and this usually happens at the time of institutionalisation), their social positions are voided. This leaves only the flesh and bones, devoid of meaningfulness but inscribed with metaphorical m e a n i n g l e s s n e s s, that nurses in nursing homes look after. R Cook’s quotation of an intern’s general observations in 1972 is a good example of what still happens: ‘Everybody on the ward service was under control. Both hernias were in good condition, already walking; the gastrectomy had taken a full meal; the veins w e re ready to go home in the morning; one of the haemorrhoids had had a bowel movement.’10 I have turned, shifted, washed and dressed people who, almost corpse-like, seem no more than skin and bone — the living dead. Silent, as if sleeping, wounded by creases in the sheets, and by bones nearly poking through the skin, their social selfhoods hover, ghost-like, detached and no longer easily readable. Their bodies seem like

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amputations. But those who are not silent, who still speak a social selfhood, who still tell stories, are yet ignored. On the surface of their bodies they carry a single, two-word inscription — Alzheimer’s Disease. Everything else has been erased. So they too become broken by the way in which the institution refuses to acknowledge them as social subjects; broken and reduced to a corpore a l i t y which has no re f e rence except, perhaps, to the inevitability of death. Hence they become figures of abjection, representative of society’s fears of age, disease, death. This socially voided, body-only status of people with Alzheimer’s Disease means that their bodies are marked by absences. They are excluded like ‘broken-off’ bits of the social body into which they no longer comfortably fit. These practices of exclusion, or of segregation, also happen within the institution of the nursing home because institutions must always be able to analyse who belongs where in the internal social hierarchy. People with Alzheimer’s Disease occupy a particular given space, people with other age-related diseases are assigned another category-cum-space, and so on. In the nursing homes where I worked there was always an enormous disparity, a ‘them-versus-them’ categorisation of people. The bodies of people with Alzheimer’s Disease who are institutionalised are subjected to rigorous schedules, rules and routines; they are ‘used’ in the sense that they are studied, experimented on (new programs are continually being incorporated and then abandoned), and frequently

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billed when a doctor comes within a few metres of them; they are ‘transformed’ by an institution which strips them of who they were and replaces this lost identity with a particular and irrevocable label; and they are ‘improved’ by force-feeding, forced toiletting, forced washing and so on. In other words, these bodies — abject, often docile to the extreme — are constructed as such by the coercive and normalising practices of medical discipline. What happens t o the bodies of patients with Alzheimer’s Disease is made brutally clear by the kind of institutional practices that occurred in the nursing homes where I worked. Their last resources in terms of physical ability, and of choice, are stripped away. Their bodies become the property of the nursing staff who look after them. They are washed, toiletted, fed and put to bed in a daily cycle that is not of their own volition. Those who physically struggle are physically restrained; those who verbally protest are molly-coddled until they cooperate or, simply yelled at or forced into bed or toilet or shower. Or they are drugged. Their bodies do not signify; they have ceased to mean anything except as useless, repulsive, demented. With no hope of recovery, of either youth or health, these bodies may teeter for years on the brink between life and death. In my ten years of nursing experience I did not see a great many instances of blatant cruelty to patients with Alzheimer’s Disease, but those I did see made me realise that this was, possibly, a common phenomenon. I have no way of knowing, as much of this kind of activity happens in secret to people who are unable to speak or who cannot

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make anyone listen anyway. I am reluctant to relate the following incidents because of revulsion for what happened and my own inability to stop it. The reason I do so is to illustrate the more extreme responses that some people have to those who have been abjected. Carl’s sister was a good friend of one of the owners of a nursing home where I worked. Subsequently, Carl was employed at the nursing home during his university holidays (he was studying nursing). At first, having a man amongst such a surplus of women (both staff and patients) was a pleasure. He flirted with the women patients and, for about a week, made everyone laugh. So it was a shock when I came across him turning one of the bedridden women, Sally, so roughly that she cried out and the paper-thin skin on her arm was torn. As I rushed off to get bandages and gauze, I heard him mutter about, or to, Sally, ‘silly old bitch.’ After that, I watched him carefully and tried to ensure that we worked together. Other examples of his cruelty soon became evident. There was one particular patient, Elaine, who he liked to torment by flirting with her and making her giggle only to suddenly snarl, ‘You’re the ugliest thing I’ve ever seen in my life.’ He repeated this scenario several times, laughing loudly at the surprise in Elaine’s face. She was surprised each time because her A l z h e i m e r ’s Disease caused her to forget what had occurred previously. He would not do this in front of me, but twice I entered the room and over h e a rd the ‘exchange’. I told him to stop it, and eventually reported him — (to no avail) — but he simply changed his tactics

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and began to pinch her when we were lifting her. She would cry out and I would tell him to be careful, thinking he was simply being careless. Then, one day, I discovered that her left side was covered in large, purple bruises. Simultaneous with this discovery, Elaine began to cry out in distress and writhe around in her bed when Carl e n t e red her room with me. Again, I reported my suspicions, again to no avail, although other nurses were horrified and tried to prevent him from going near Elaine. Eventually Carl went back to university. I don’t know how many more people he hurt when nobody was looking. If he continued with his studies he would now be a qualified nurse. Months later, another man was employed. To begin with, Phil seemed compassionate and fun. Then, one day, he too was caught by one of the other staff giving a woman patient a light slap-slap-slap across the face, and laughing at her shock and distress. He was given a warning and, later, another warning when a similar incident occurred. By then, several of us had reported his behaviour. He became unhappy and eventually left the job with his fist raised at us, shouting things about patients with Alzheimer’s Disease like, ‘Those people are just shit, they’re not even human!’ Again, I don’t know how many people he hurt. Both these men expressed a revulsion for the patients with Alzheimer’s Disease, particularly the women. But they didn’t seem like cruel men, and they didn’t have ‘bad’ reputations outside the nursing home. Also, they w e re quite gentle with patients who didn’t have

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Alzheimer’s Disease. Theirs was a cruelty which had a specific target: those with Alzheimer’s Disease, usually female, who were bedridden, and therefore physically helpless, and whose verbal skills had deteriorated. Violence towards the excluded in society — the aged, the disabled, women, people of various ethnicities — is not the topic of this book, and discussing such incidents at length is beyond its scope. The reason I include these stories of specific acts of violence against people with A l z h e i m e r ’s Disease is to illustrate the possible repercussions for those abjected in and by western society. It is not simply that they no longer matter, are not listened to, are ignored. It is also that the Alzheimer’s Disease label often equates with something which revolts, and this revulsion sometimes induces a cruel hatred which manifests itself in violence. As has been seen, people with Alzheimer’s Disease who are institutionalised suffer a series of violent displacements, physical, social and metaphorical. The way these people are displaced is both the product of, and produces, a particular, and irrevocable, perception and treatment of them (by staff, family and society) which dehumanises them, ‘silences’ them, forgets them, abuses them. The horror of the condition for people with the Alzheimer’s Disease lies in the way the horror of ‘them’ is eventually, and cruelly, expressed. It lies in comments like ‘Nanna’s disgusting — she dribbles and she stinks.’ And it lies in a lack of recognition that the person even exists, a lack that may result in private, but extreme, violences. Thus displaced, many people with Alzheimer’s Disease

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gradually (especially as their condition deteriorates) become invisible to the rest of society. Ensconced in nursing homes, they are hardly ever taken out, so are hardly ever seen by the general public. Within the nursing home what they say, even what they scream, often falls on deaf ears. Their position, socially, physically and metaphorically, is most often a position which is always already erased. The question, then, is this: framed by the dark space of the abject — this space that is a generative context, a condition, of storying — what happens to the stories told about and by people with Alzheimer ’ s Disease? The stories told a b o u t A l z h e i m e r’s Disease, which often reveal a dis-ease, a disgust with those who are afflicted, are generated from, and help to generate, this dark space of the abject. And the storying by people with Alzheimer’s Disease?

These stories are there, somewhere between the crying out and the silence, and can be heard as a faint keening, as if from behind a wall.

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4 Restorying the Self

I am told of a man who sets out to make a picture of the universe. After many years, he has covered a blank wall with images … only to find at the moment of death that he has drawn a likeness of his own face. Jorge Luis Borges, The Aleph and Other Stories: 1933-19691

I remember my mother’s friend, Rosa, who was, when I knew her, in the beginning stages of Alzheimer’s Disease, being frequently distressed by her own forgetfulness and saying things like ‘What’s happening to me? I don’t want to be like this. I can’t remember anything. I’m so scared.’ As a child, I was crazy about Rosa. When I first met her she was eighty, and had a companion, a ‘do-for’ to help her cook and clean. Rosa was a powerful, competent sort of woman. She knew how to make white sauce just like she knew how to surround herself with family. Her house

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was always full of sons and daughters and nephews and nieces and grandchildren and friends. But, gradually, she began to seem different. No longer was she able to wield her walking stick like some sort of weapon; no longer was she able to govern the house with her long-held authority. She began to become confused. Eventually, she became confused enough to know she was confused, but not confused enough to let go of her authoritarian attitude to the running of the house. She became so distressed that, sometimes, she would look in the mirror at her old body, after her shower, and weep for what was lost. It is difficult to imagine how Rosa, a woman of such self-conscious dignity, would have coped with the latter stages of the disease; she died before this happened. So she didn’t ever grasp the extent of her confusion and, until she died, she continued to story herself as boss. Rarely do people who are institutionalised because of A l z h e i m e r ’s Disease r e p resent themselves, or story themselves, as people with Alzheimer’s Disease. This may be so because the symptoms of the disease, such as confusion, disorientation, loss of recent memory, often p revent them from knowing about this aspect of themselves, an aspect which, for most others, becomes who they are (a who-they-are which actually is who-theyaren’t). Instead, they mostly story about who they are apart from the disease, who they were before the onset of the disease, or who they imagine they are or would like to be. But such self-representations, such self-storying — given the contexts of the nursing home, of medical

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discourse, of the metaphorisation of the diseased as abject — have very little, if any, impact. What you say about yourself, and what is said about you, is, in fact, who you are — your self. But what happens when what you say about yourself is obliterated by what is said about you? What happens when one kind of representation supersedes another? And what if what is said about you denies you the right to say who you are, or the right to have who-you-say-you-are taken seriously? It’s pretty hard to convince yourself or anyone else that you’re good if everybody says you’re bad, and the same goes for any sort of labelling. In the words of Abdul R JanMohamed and David Lloyd, ‘Minority individuals are always treated and forced to experience themselves g e n e r i c a l l y. ’ 2 People with Alzheimer’s Disease are minority individuals and, as such, they are ‘typed’. In western culture, people with Alzheimer’s Disease, as well as people with other terminal and disabling conditions, are often excluded to such an extent that they are rarely even listed in discussions of minority groups. Their selfhoods are so erased by culture, and by the discourse of medicine and its institutional practices, that their autobiographical ‘I’ is lost. Once institutionalised, their selves are defined in terms of the disease: they are the disease, an object of study and treatment. The self becomes an object: disease. Consequently, what people with Alzheimer’s Disease say about themselves is not simply ignored, muffled or set aside; it is not seen to have any bearing whatsoever on who they are. As a nurse, I found it upsetting that the personalities,

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life experiences, and what I thought of then as the ‘inner’ or ‘real’ selves of people with Alzheimer’s Disease, were ignored. I now realise that it wasn’t some intrinsic self, but their own self-representations that were ignored — their own stories of who they were and who they had been. In my experience, these were rarely stories about being ill or confused, or stories about being institutionalised or excluded, or stories about being old or about dying. Instead, they were stories about love, romance, life, home, friends, loss, hope; stories in which the autobiographical ‘I’ worked hard to re-establish itself as something certain in the face of the confusion experienced as a result of the disease and institutionalisation. And yet these stories were ‘read’ as nonsense. And their tellers — the people with Alzheimer’s Disease — were seen as being somehow separated from their stories and not part of them; their stories were viewed as the disembodied ramblings of the diseased, rather than stories told by people. When I began to listen, however, I began to see these stories as attempts to retrieve and reconstruct selves that had somehow been lost, through time, illness and institutionalisation. And I began to believe, and become fond of, those storied, storying selves. What I now realise is that my response to these stories was seen as just as unimportant as the stories told: unimportant and devoid of ‘I-ness’, because (this oversimplifies but is still telling) I was not a man, I was not a doctor, and I was not a registered nurse-in-charge. I couldn’t understand this at the time — I couldn’t understand why nobody that I knew in the medical

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profession would listen to the people with Alzheimer’s Disease who were telling these stories, and I couldn’t understand why nobody would listen to me when I talked about them. I now understand that this was because people with Alzheimer’s Disease (and often the people who care for them — family, friends, nurses) are absorbed into the anonymous, undiff e rentiated mass which is seen as a problem for society. Under the umbrella of Alzheimer’s Disease, all sorts of people are silenced. When we story, we story ourselves, whether we mean to or not. We constantly construct, even invent, ourselves in our anecdotes, conversations, inner thoughts. It doesn’t matter what we are storying about, something of us is bound to be involved. Hence, all storying pivots on and is generated by the story of ‘me’ and this is yet another complicated context for all storying. You may think that when you are sharing a bit of gossip that you are storying someone else’s ‘me’ and quite possibly you are. But you are also storying your own ‘me’. Often we don’t realise how much of ourselves we are giving away when we tell a story about someone else. I am not suggesting that a story’s meaning is ‘captured’ or fixed by an understanding of the self who tells it. My view of the self-in-story, or the self-contextualised story, is not another way of saying that once the self of any story has been ‘found’, or explained, then the meaning of the story will be clear. This is because there is no self to be found except across the stories of the self we tell. Selfstorying, or autobiography — and by this I mean

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everyday oral autobiography — constructs the self, is the self — is a self-generated self. If this kind of storying is ignored then that ‘who I am’ is, in effect, lost. Joe’s story about himself as a virile, young man in love constituted his autobiographical ‘I’ at a particular time; that’s how he represented himself, so that’s who his self was for him, and — potentially or in part — for anyone who listened to the story. But, except for a few nurses, including myself, this particular story of Joe — this particular self-representation — was not taken seriously. It was not seen to be part of his identity but part of his condition. This is the kind of thing that got me thinking about how we are all fragmented, layered, multiplistic selves. The notion of self defies a unified explanation, despite our attempts to keep our selves ‘together’ — for instance through the use of gender images (I’m a girl, I’m a boy) or work-related images (I’m a carpenter, I’m a housewife, I’m a cook, I’m a secre t a r y, I’m a lawyer). We human beings evolve, not just millennium by millennium, but split second by split second. We are confused by our selves because we are simultaneously defined and labelled, and also emotionally and experientially transient, unpredictable and, often, indefinable beings. So, our selves often contradict, or are in conflict with, our selves. Whilst there can be no such thing as a coherent self, in our society we are expected to achieve a coherent i d e n t i t y. We think we achieve this coherence by pretending, by fictionalising, by storying who we are to suit the various social situations into which we are either thrust, or choose to enter. We make our coherence credible

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by storying our selves as this or that according to sociocultural expectations. We ‘fit in’. The self, then, is always a representation, a version if you like, of reality. The autobiographical ‘I’ is only one such representation; for instance, the car you drive, the clothes you wear and your career identity are also ways of representing the self which are simultaneously your own and someone else’s. Joe’s autobiographical ‘I’ in the story he and I shared resisted other representations of him; it was, amongst other things, an internalised re p resentation of western notions of romance, of maleness, of youth. His ‘I’ was, therefore, contextualised and generated by all sorts of cultural content. And his stories about his engagement to Sarah, and his reliving of this experience through his storying relationship with me, w e re his own way of renegotiating these cultural narratives at a particular moment and in a particular place. We are not innately who we are as much as we are who we say, and therefore think, we are. I would never have known the Joe of the Joe Story if he hadn’t storied himself as that Joe. I might have imagined another Joe to the cantankerous old man that he seemed to be before he began his romantic story, but I wouldn’t have had any basis for this. It was his storying of himself as beau, as lady’s man, as gentleman, as sex symbol even, which gave a kind of concrete reality to the ‘I’ he expressed. He became that Joe, both for himself and for those of us who took him, and his storying of himself, seriously. He made us realise that he was not just Alzheimer’s Disease.

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The importance of the self to storying became obvious to me when I saw how stories told by people with Alzheimer’s Disease were misunderstood as meaningless because of how the people themselves were represented. In stories we tell about people with Alzheimer’s Disease, often the content of the stories told by them reinforces the ‘crazy’ label already given to them. And so everything else about that person, that teller, and his or her selfrepresentation, is ignored, as if invisible, inaudible — not there. My ‘epiphanic’ experience with Joe, and my subsequent changed attitude towards people with A l z h e i m e r ’s Disease, gave me a new respect for their stories and for them. I began to realise that these stories were generated not just by illness but by the ill person’s self, that internalised self-representation which, however d i s rupted by disease, still functioned as a legitimate context of any one story. More importantly, I also began to realise that the self of any person was never simply a single self but consisted of many layers of self; that a story’s meaning is multiplied and mobilised, depending on how the storyteller mobilises his or her repertoire of s e l f - re p resentation. I realised that self-re p re s e n t a t i o n changes, however subtly, from one telling to the next. And it isn’t just people with Alzheimer’s Disease who do this. It seems to me that for people with Alzheimer ’ s Disease, the disease itself is like the top, most obvious, layer of what is a multilayered self. But when the category of Alzheimer’s Disease is applied to someone —

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especially once they are institutionalised — their other selves, or layers of self, seem to evaporate when it comes to how they are perceived and treated. They are treated only as people with Alzheimer’s Disease and not as people with life histories, personalities, selves. Their lives up to the advent of the disease are subsumed under a medicalised, definitive labelling. One of the most difficult aspects I found in caring for people with Alzheimer ’s Disease in the nursing home environment, was not being able to identify these people except in terms of their illness (and, of course, their age). Of f i c i a l l y, their past was irrelevant to their present status. This was partly due to the fact that often they were admitted with very little in terms of information or documentation, even about their medical histories. Also, these histories, these lives, were rendered less accessible to care-givers, and perhaps to patients as well, because the lack of space in the nursing home and the risk of theft r e q u i red that they rare l y brought with them any artifacts from their past. In any case, many of them had become so medicalised, medicated, and defined by the discourse of medicine that whoever they were prior to admission had ceased to mean anything: their stories became defined as a kind of meaninglessness. All of this suggests that in order for the self to be recognised as having a selfness, it needs a history of some sort. When the life history of people with Alzheimer ’s Disease is either not known, or discounted as irrelevant, or unsupported by a material environment, then their selves are diminished in terms of how other people

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perceive them. Indeed, they are often not even perceived as having a self, a selfhood. At the most extreme, people with Alzheimer’s Disease who are institutionalised are often not even identified at all, even in terms of gender, as anything but diseased. During the writing of the thesis version of this book, several academics suggested that I look at gender issues. But no matter how hard I tried to incorporate such theory, I couldn’t make it work. I now realise that the label ‘Alzheimer’s Disease’ rendered the gender of the suff e rer irrelevant; it just didn’t matter whether you were male or female — once you were diagnosed with Alzheimer’s Disease you became one of ‘them’. If a self needs some sort of a history to be recognised as a legitimate self — a legitimate person who has experienced things, who can be identified with, whose life is important or interesting — then why do we expect people with Alzheimer’s Disease to shut up about the history of their lives that they can remember? If a person with Alzheimer’s Disease is storying about something that happened to him or her at five years of age as if it were just the other day, so what? Why not listen to that story of who that person was? It wouldn’t be told if it wasn’t intrinsic to who he or she is now. When I was a teenager I can remember our family visiting a married couple my parents’ age who lived with and looked after the wife’s father, Oliver. He seemed very old to me then, and I now realise he was in the beginning stages of Alzheimer’s Disease. It always seemed that his daughter and son-in-law barely tolerated his presence.

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While my parents and their friends were having coffee, Oliver — who would make and serve the coffee with my help — would continually attempt to insert himself into the conversation, mainly with anecdotes about the past and his childhood. Sometimes these anecdotes were relevant to the conversation and sometimes they weren’t. And, yes, even my family had often heard them before. But every time Oliver opened his mouth, his daughter or son-in-law would talk over him or embarrass him by saying things like, ‘Yeah, Dad, you’ve told that story a thousand times,’ or, worse, ‘Oh, Dad, you don’t know what you’re talking about. Go and put the kettle on. They don’t want to hear about that.’ Once, while I was helping Oliver make the coffee, and he was telling me a story about his school years, his son-in-law came in and said, ‘Dad boring you to tears I suppose,’ with a wink-nudge look at me and not even a glance at Oliver. I felt Oliver wince beside me, then wilt, but he always bounced back despite the fact that this sort of comment was made continually. When he eventually went to have a rest, his absence was greeted with great sighs of relief and some surprisingly nasty comments. I felt then that he needed to tell these stories and I now realise that he was clinging to those intense memories of his childhood as a way of asserting himself, consolidating himself. I didn’t understand why his family couldn’t see this. They felt they were doing a wonderful thing in having him live with them, but they absolutely refused to listen to him. I realise that I can’t possibly know how it feels, or what it’s like, for those who not only care for but also live with

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someone with Alzheimer’s Disease. I also realise that Oliver’s family had heard his stories again and again. Even so, it didn’t seem like such a hard thing to allow him to have his say in a conversation with guests, even if his say was a bit disconnected. He wanted so much to tell us about these experiences; why couldn’t he be allowed to? Oliver’s stories, despite their importance to his sense of identity, were not simply ignored they were rejected. He told — or tried to tell — about being sent to boarding school at the age of seven and the trauma of that experience, of being lost at a fair, of having what he called ‘a privileged life’, of his time as a soldier in what must have been World War One and so on. What was disturbing to me about how he tried to relate snippets of his life was the way his family chopped further at these fragments so that, in the end, Oliver’s stories were reduced to little, half-hearted bits. Being young and polite and not involved in the adults’ conversation, I would always pay attention to him. Often, then, he would utter his sentences nervously to the whole group, while looking only at me for a response. It was as if he were being diminished as a person — as a self — right in front of my eyes, into littleness. Of course I only see this situation, in the way I’ve described it here, in retrospect. When I was working in nursing homes, and listened m o re closely to the stories people with Alzheimer ’ s Disease told, and learned to take into account the selves of the tellers represented in their stories, the stories began to make more sense. Suddenly, these enigmatic, sometimes contradictory, sometimes ambiguous and

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inconclusive stories didn’t seem so different from those we all tell about our selves. In listening to these stories, which were often snippets of a life history, I became aware of the varied and different roles many of these people had played in their lives. People with Alzheimer’s Disease do not fit in; they are abjected, excluded. Nevertheless, despite cultural expectations of coherence, one of the reasons I have been so seduced by the storying by people with Alzheimer’s Disease is the way these stories so clearly demonstrate the fact that, as humans, we all possess not one but several identities. We are not unified subjects or selves despite our attempts to draw our selves together into wholes. As the bodies of people with Alzheimer’s Disease begin, literally, to ‘fall apart’, it becomes apparent that people are not simply black or white, young or old, sick or well, masculine or feminine but all, several, many of these. Another reason I have found these stories so compelling is the way they demonstrate how the process of identifying as a social self, not unilaterally but severally, entails the use of invention. We invent ourselves t h rough the stories we tell about ourselves, so these stories are part fact and part fiction. And the fictions derive not just from private confabulation, but also from cultural confabulations, from the ‘grand narratives’, or what I would call the ‘supposed-to-be-like-this stories’, of, for instance, romance and love, of family, of childbirth, of m o r a l i t y, which are given to us by our culture. When people with Alzheimer’s Disease make things up about who they are, or were, this is seen to be somehow

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‘wrong’. And yet, making things up about ourselves is part of who we are. In fact, making things up about ourselves is who we are. Every day it seemed Robert had a new story of himself — a new identity, a new selfness. One day he would be a fireman, the next day a butcher, the next a taxi driver. One day, when I arrived for work, he was sitting in the foyer of the nursing home. As I entered, he leapt up and said, ‘At last! I thought you were never coming.’ He took my arm and tried to usher me back outside. ‘The taxi’s waiting. I’m so glad you suggested the zoo. It’s very peaceful there this time of the year.’ And at my confused expression, ‘Don’t tell me you’ve forgotten!’ On some evenings Robert would burst into the kitchen as the evening meals were being dished out and start ordering the cook around. ‘Where are those hamburgers, Maude?’ (The cook’s name was Helen.) ‘You’re keeping the customers waiting as usual. We’ll lose business if you don’t hurry up. I’ll take some of these meals out, save you some time. Have you done the salads yet?’ Another time I found Robert sitting on his bed in deep thought. As I entered the room, he exclaimed, ‘Dear, where have you been? I was beginning to get worried. Sit yourself down and I’ll get you a cup of tea. What a day I’ve had.’ Robert was extremely quick to improvise stories to explain or enhance the various mundane and confusing circumstances and situations of the nursing home. All the staff were given names and roles in these stories, and his moments of bewilderment were as short-lived as his stories, which would change from one hour to the next. In

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his stories he always featured as the main protagonist. Whether he had, in actual life, played all the social roles he identified with was impossible to say. His ability to invent an identity for himself at any time and in any situation was remarkable. But maybe, like David, he was also trying to make sense of his confusing environment — inventing ‘versions’ of himself to account for the strange environment he kept finding himself in. Robert’s storying illustrates three important points about how storying works in general. Firstly, self-storying can be seen to be generated by the self in all its plurality — utilising the self’s imagination, dreams, wishes, experiences, memories, emotions and physiology; s e c o n d l y, storying is one of the fundamental ways in which we identify ourselves in terms of cultural expectations and the cultural repertoire of stories of the self; and, thirdly, storying is a way of locating ourselves in the world — of constructing ourselves as social beings. Oliver Sacks, in his treatment of people with dementias such as Alzheimer’s Disease, describes the need for identity which is often evidenced in their stories: ‘A f re n z y,’ he says, which ‘may call forth quite brilliant powers of invention and fancy — a veritable confabulatory genius — for such a patient must literally make himself (and his world) up every moment.’ He goes on to say that we all have ‘a life-story, an inner narrative — whose continuity, whose sense, is our lives. It might be said that each of us constructs and lives a “narrative”, and that this narrative is us, our identities.’3 I think one of Sacks’s key points here is that our

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storying is our identit i e s — he uses the plural. So, whatever we story about ourselves (whether as a silent dialogue with ourselves, or a conversation with someone else), is who we are, and is who we live. Sacks doesn’t speak of identity in the singular because he realises that we are made up of many identities — that we all identify multiply. For instance, the gender-based identities of western society have made it difficult for people to get beyond their culturally assigned identities of male and female and to see their life experiences in other than gendered terms. Even when people (gays and lesbians, for instance) step outside gender prescriptions for sexuality, their gendered identity is still a major factor in the way they are defined, and sometimes punished, by the rest of society. This division between the sexes serves as a model in western society for other divisions, such as sick versus well, old versus young, mad versus sane and black versus white. These categories are usually thought of as being separate and unblendable, fixed, unitary and universal. In contrast to this static model of the self, Jana Sawicki proposes a model ‘that views personal identity as constituted by the myriad of social relationships and practices in which the individual is engaged. Because these relationships are sometimes contradictory and often unstable, the identity that emerges is fragmented and dynamic.’ 4 In other w o rds, people, no matter how ster e o t y p i c a l l y h e t e rosexual, for instance, do not fit easily into their prescribed male or female roles because they are always more than one thing and always changing.

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My own experiences as a child of wanting, at one time, to be a boy (I would say my name was Julian), and, at another time, of wanting to be black (I would say I was albino) are not particularly unusual. I would speak and act out these diff e rent identities, to the horror of my parents, and this is the point. What these experiences illustrate is the fact that in western society identity is seen to be a singular thing. Anything that complicates this unitary, singularised definition of who we are is either absorbed into the unilateral identity or ignored, or — my parents’ reaction — rejected, abhorred: I was told I was becoming ‘unbalanced’. It is exactly this sort of reaction that occurs when people with Alzheimer’s Disease story selves alternative to those which are prescribed. But everybody stories different representations of themselves, not just as a result of different social situations but also because people change. It is not that the notion of identity needs to be discarded but that it needs to be viewed in conjunction with ideas of diff e rence(s). We are all more than one identity: we all identify differently in different places, situations and through time. As Trinh Minh-ha puts it, ‘ D i ff e rence does not annul identity. It is beyond and alongside identity’: The same holds true for the choice many women of color feel obliged to make between ethnicity and womanhood: how can they? You never have/are one without the other. The idea of two illusorily separated identities, one ethnic, the other woman (or more precisely female), again,

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partakes in the Euro-American system of dualistic reasoning and its age-old divide and conquer tactics.5 Our western system of thought pivots on such binary oppositions — we are either one thing or another, man or woman, light or dark and so on — so much so that a third, or further, possibility is unthinkable. Gilles Deleuze uses the metaphor of le pli (the pleat or the fold) to describe the ‘pliability’ of the self. 6 T h e storying by people with Alzheimer’s Disease demonstrates this ‘pleatedness’ of the self, this wonderful incapability of the self to be just one thing, to r e s t comfortably in one cosy category. Perhaps this is because the disease causes people to lose their grip on the process of inventing, or adhering to, a socially acceptable self in expected ways. Robert’s storying dramatically illustrates this but there were also many other people with Alzheimer ’s Disease who storied a multiplicity of self, whose storying refused an imprisoning, unilateral status and, instead, radiated a manyness. The storying by people with Alzheimer’s Disease very explicitly demonstrates the impossibility of a unified, static self. The mobility and multiplicity of the self in many of these stories is striking, especially in light of the fact that many of these people are immobilised by their physical conditions and their objectification within their institutional surroundings. Despite these disadvantages and despite (or because of) the fact that many of these stories are seen to be nonsensical or dysfunctional, they do demonstrate the impossibility of a unilaterally defined

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self. And they also demonstrate, excitingly, the possibility of a kind of freedom available to those who refuse to accept the limits imposed by their given identities. They demonstrate that storying can also be a way of utilising who we are ‘supposed to’ be to create something different. If we weren’t always placed in particular social positions, then the whole idea of subverting this givenness of who we are would be devoid of purpose. One of the things that can make us interesting human beings is this ability to re-conjure or re-story ourselves. In so doing we are able to cross back and forth over those imposed social limits of identity; we are able to expand ourselves. The self only comes into being thr o u g h language which is representation — through storying. Robert’s stories can be seen to be generated by a desire on his part to become a socially accepted and acceptable human being rather than a ‘patient’. His stories can also be seen as an attempt to create, or construct, this accepted and acceptable human being through the act of storying. The stories themselves had a certain impact on the staff; for instance, they would be paraphrased and repeated at handover because they were funny or interesting or irritating. In this retrospective fashion they were rarely taken seriously and simply r e i n f o rced for the staff Robert’s demented status. But while he was actually telling these stories there was a greater impact because he was so credible as a storyteller. A couple of times he even fooled new staff into thinking he was a doctor or a visitor. Until they realised he was a patient, he gained their respect and attention. And even after his ‘cover’ was

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blown, his stories still elicited a positive response. Whether Robert’s stories were received as credible or not, they did establish for him a reputation as a good, an entertaining, storyteller and, as such, he gained the admiration of many of the staff, as well as some of the other patients. This obviously gave him a lot of pleasure and was reason enough for him to continue. He was never offended when people laughed (in fact, he enjoyed this), and if confronted about the gaps and contradictions in his stories, he was always quick with an explanatory anecdote to footnote anything confusing that he might have said. He would puff out his chest, give the questioner a withering look, and then, as if talking to a child, explain things with meticulous attention to detail. This usually meant another story, sometimes totally irrelevant to the story under fire, but nevertheless told in such a way as to force the listener to respond with, ‘Oh, I see,’ rather than risk another withering look or yet another story to confuse them further. But Robert himself was rarely confused, or, at least, rarely seemed confused, by the conflicting stories he told about himself. Whether these stories derived from his memories of the past, his imagination or a mixture of both, it didn’t matter to him in that they provided him with a sense of self and, most importantly, a sense of self-worth and social acceptability. I say a ‘sense’ because he often seemed to imagine from us — the staff — a more accepting attitude than was really there; his re-creation of himself through storying was something very personal — something he, not we, actually believed. In other words, while his stories were

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not accepted as literal truth, it was through the act of storying that he, Robert, was accepted and liked. And, somewhat paradoxically, this was because of stories which seemed so plausible at the time of telling. The inventive skills of people with Alzheimer ’ s Disease like Robert, who tell stories in an eloquent and uninhibited way, is something which the discourse of medicine, for the most part, misses in its focus on diagnosis and treatment. Crisp says of medical research l i t e r a t u re, ‘what is stressed is deficit, absence — the failure of language as a practical instrument, and with it the loss of meaningfulness.’ 7 However, she adds, there a re also medical professionals involved in caring for those with Alzheimer’s Disease who do recognise not only their ability to communicate but also their ability to express emotions and maintain relationships. She points out, ‘Hence, the correctness or appropriateness of the patient’s utterance becomes less important than the feelings that can be “read behind” the word s . ’ 8 H e r reference to ‘feelings’ would be ambiguous if it weren’t for her earlier comments about her mother (a sufferer of A l z h e i m e r ’s Disease): ‘Listening to her stories I am struck by the sheer bravura of her bricolage [arrangement of bits and pieces] into a plausible whole of fragments appropriated impartially across the boundaries of fact and fantasy.’9 This bravura — courageous and adventurous — storying by people like Robert and Crisp’s mother, demonstrates the emotional, ‘feeling’ stuff of stories which, no matter how much it is denied or demoted

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t h e o re t i c a l l y, cannot easily be denied or resisted in everyday life. It was the emotional ‘pull’ of these stories, of one self to another, that first attracted my attention and made me ‘read’, with newfound feelings of sympathy, respect, surprise and fascination, their tellers. One of the reasons for this pull was the way these storytellers succeeded in doing what Dick Hebdige says is usually so hard: It is so difficult to resist our own construction, to build constructively on what’s already there. It is so difficult to peel back the shifting layers of images and words through which we have been made and within which we go on making and remaking ourselves so that we can stand up and say this is who I am and this is where I come from.10 Again, one of the reasons why people with Alzheimer’s Disease who tell stories about themselves might be able to do this, is because they are unaware of the way they have been constructed as abject. But, despite the bravura storying of many of the patients in the various nursing homes where I worked, and the sometimes positive effects these stories had on staff, it did not make any difference at all, in a physical sense, to the way they were routinely treated, a way which separated their bodies from their stories. I had never been made so conscious of people’s bodies as when I began working in nursing homes. Patients, especially those with dementias like Alzheimer’s Disease, were often handled without any awareness or consideration of

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their ‘selfness’, handled as if they were only bodies and nothing else. Often they were wrenched from slumber in the very early hours, pulled forcibly out of bed, placed firmly on commode chairs and wheeled to the shower. H e re they were stripped, washed, dried and dre s s e d again — often without a word of explanation, because of a belief that they didn’t understand what was going on anyway. The daily routines pivoted around getting food into the patients and ensuring the subsequent, and required, daily bowel motion. The intimacy of physical contact necessary for these routines between nurse and patient was something over which the patients had no control. They were touched, handled, repositioned, toiletted and so on constantly t h roughout the day and had no choice over when or w h e re they were touched. Many became limp, immobilised, refusing to move themselves or help in any way even if they could. Refusing also to speak, these patients began to seem like heavy lumps of flesh, nothing else — all body. This treatment of people with Alzheimer’s Disease was not (in my nursing experience) seen to be either unfair or unusual in an institution where the control of bodies is sanctioned by a medical discourse, and, subsequently, a society, which has already abjected those with dementias such as Alzheimer’s Disease. This was simply called ‘care’. Whether bodies are young or old, sick or well, male or female, black or white, the legacy of western culture’s mind-body split has had enormous r e p e rcussions in terms of how we all perceive people, and it contextualises

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and generates the stories told about them and by them. We ‘see’ the body first — age, colour, illness, gender — before we see anything else. And often we don’t see past that sometimes heavily inscribed ‘bodycover’ to the body/self who might have an alternative, an additional, story to tell. When Wilbur was admitted to the nursing home w h e re I was working he was full of stories of home. Bewildered by the strangeness of his new environment he was, nevertheless, quite lucid. He knew he was sick and that his wife needed a rest; he looked forward to the following Sunday when she always cooked a roast and his son came over for lunch; he liked the ‘new featherdown quilt’ she’d just bought for their bed. And so on. But, by the time his wife came on the following Sunday to take him home for the day, Wilbur had become so disorientated that he didn’t even recognise her at first. By that time he had met about thirty different nurses and other staff, and thirty different patients; he’d been moved f rom his initial bedroom to another, and he’d experienced several days of utter confusion in terms of the nursing home routines. There a f t e r, his condition worsened at an alarming rate; his wife stopped taking him home as it only seemed, in her words, ‘to make things worse’. After a couple of months, Wilbur became bedridden, silent and, in the same year, died. I often wondered if the rapid deterioration in his condition was exacerbated by his institutionalisation and the added confusion this caused. Wilbur was the first person I’d seen deteriorate so quickly, and I was shocked. Having

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now talked to many nurses working in various nursing homes, it seems this rapid decline is not uncommon. It may be difficult to scientifically determine a cause, but I now think the reason is obvious: a drastic change to the environment for someone whose primary need in life is a stable environment is, at the least, detrimental and, at the worst, life-threatening. But it is not just the shock of a new and strange environment that is so horrible for many people with A l z h e i m e r ’s Disease: it’s the way that envir o n m e n t overtakes and invades them. Being force-fed and given suppositories are two examples of the body being invaded in a very literal sense. And even what Barbara Haight and Irene Burnside term ‘nursing interventions’,11 can be seen, in my view, as a type of invasion. Group sessions in which elderly patients, including those with dementia, are encouraged to share their stories and memories exemplify the kind of intervention which might be welcomed as laudable, but, all too often, is coercive and intrusive. Group sessions are, according to Haight and Burnside, fairly common practice among g e rontological nurses, social workers, occupational therapists and psychologists, all of whom, use ‘the process differently’.12 To suggest that such a program might be invasive of the body/self of a person with Alzheimer’s Disease might seem to contradict my argument that such people are dehumanised because their storying goes unheard. But these programs are initiated by the nurses, psychologists and other health professionals, not by the patients. Patients

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are organised into structured groups by someone in a position of authority. In these sessions the childlike status of the participants is obvious. Haight and Burnside say that patients with Alzheimer’s Disease often ‘refuse the g roup experience’ because of their lack of ability and willingness to r e m i n i s c e .1 3 But the inability of such patients to understand ‘what’s going on’ in a gro u p session such as this does not suggest to me an inability to tell stories or to reminisce. It’s just that, once again, their storying does not fit the given agenda; it is not accepted into the ‘inner circle’ of what is expected — the norm. If asked about their childhood, people with Alzheimer ’s Disease may not be able to respond appropriately or coherently; the question, and the controlled environment of the group session may simply confuse and threaten them. (This is the reason why my ‘interview’ with David didn’t work: I was trying to control the situation using a certain methodology and all this did was cause him discomfort, confusion and, I think, fear. And it’s also exactly why the Joe Story worked insofar as Joe continued to participate: the situation was, mostly, of his making — it wasn’t controlled, it was spontaneous.) At other times, and in other places, people with Alzheimer’s Disease may spontaneously offer anecdotes and reminiscences; but if this is during a shower or a meal, for instance, their storying is inevitably cut short by nurses who are in a hurry to move on to the next patient. Their ‘lack of ability and willingness’ to share their stories in a group session suggests to me a kind of self-defence as well as a defiance, even if this defiance is not always intended.

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Such ‘intervention’ seems to me another way of excluding and controlling people. Even though the recreational and therapeutic benefits are, according to Haight and Burnside, undeniable, they do not recognise that this kind of intervention is, nevertheless, a coercive practice which boxes patients into a formal situation of storytelling when, outside the hour or so devoted to this practice, their storying will more likely be ignored. In my experience, people with Alzheimer’s Disease were often wheeled or walked up to the dayroom for group activities — games of bingo, interactive sessions and so on — whether they wanted to go or not. Herded into the dayroom and plonked into chairs, they often seemed either bewildered or upset and, mostly, refused to participate, especially when confronted with a question or a remark directed specifically at them. Joe and David were amongst those who resisted these occasions, sometimes disrupting the sessions to the extent that they would be reprimanded and returned to their rooms. Yet Joe, David and others were wonderful storytellers. I once asked Nelly, whose Alzheimer’s Disease was well advanced, a question about her past. ‘It’s none of your bloody business,’ she replied. ‘Who do you think you are?’ And yet she’d just been telling me all sorts of lurid details about her life as a prostitute, her thre e husbands, her son who was in gaol and the way ‘a black man with a white face’ visited her every night. She told these stories with wicked delight, wanting to horrify. My serious response seemed to appal her, as if what I asked

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had nothing to do with what she was saying. ‘Yo u young ones,’ she’d remonstrate ambiguously, ‘you don’t know.’ Followed by, ‘Close the window, yes, that one; that’s the one he always comes through. Close it tight.’ Nelly wanted to tell her stories her way; my interjections were seen by her as a rude and confusing interruption. She wanted to story herself to attentive listeners, rather than ‘helpful’ — and possibly patronising and coercive — ones. And isn’t this what we all want? Nelly didn’t want to be interrogated or analysed; she just wanted to tell her stories when, where and if she felt like telling them. What I believe Haight and Burnside do when they dismiss patients with Alzheimer’s Disease as being incapable and unwilling to tell stories is to relegate them to an institutionally wrought non-position which renders any storying which goes on outside the group session illegitimate, unheard. The way patients are thus placed or ‘spaced’ has an implicit effect on the stories they tell. Stories told by people who are herded into a room, then removed when unable or unwilling to participate, are stories unheard. But this non-position is not something which all people with Alzheimer ’ s Disease accept ‘lying down’. Some of them are able to tell stories which draw attention to the fact that they are still living, breathing, thinking, feeling bodies. But even theirs is still an ambiguous position. That people with Alzheimer’s Disease who live in nursing homes are often moved around like the figures on a chessboard has a direct effect on the way in which they

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story. Their storying is either silenced by the way their bodies are spaced, or it proliferates unheard. Bill, who storied everything from the amputation of his legs (untrue) to domestic violence (possibly true) was, as I’ve already described, an extremely physical person. Every word he uttered was accompanied by some sort of physical expression (a punch, a kick or strangely wild, hilarious laughter during which he would literally bend double and throw his head back). This laughter, which for some was probably abrasive as it was so frequent, was to others, both staff and patients, like a tonic, delightful. (You don’t hear a lot of laughter in nursing homes.) Bill would throw his body into these stories with the most physical guffaw I’ve ever seen. Our stories are not so much e mbodied as bodied, bodying parts of us. As Minh-ha puts it, the ‘thought’ entailed in putting the body into words ‘is as much a product of the eye, the finger, or the foot as it is of the brain.’14 What is interesting about the storying by people with Alzheimer’s Disease is the way their stories are so obviously and inextricably tied up with their bodies. This is not simply because, like Bill, they talk a b o u t t h e i r bodies, nor is it simply because their bodies, having become dysfunctional, draw attention to themselves. It is m o re a matter of how their stories demonstrate an abandonment, even a subversion, of the dictates of order, logic and coherence inherent in rules of speech and conversation (everyday storying). This ‘nonsense’ talk is, of course, a characteristic of Alzheimer’s Disease, but it is the uncensoredness of their stories which is so striking —

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the way their stories are formed through and of their bodies and not by any external grammatical rules. So speech issues directly from body in the sense that the mind does not fold back on itself in order to refashion the thought and make it more acceptable for speech. As a result, the storying is often incoherent, contradictory, multidimensional, but forceful and poetic — it has a physical strength. Gillian said, ‘I was wading in the water too deep for me I called and such a beautiful baby big bright eyes and a mop of curly hair what’s that thing in front of me? take it away I don’t want it feeling ill lately all hot and b o t h e red the flowers smell heavenly dear no not too much I’m nervous of the dark not sure which way I’m supposed to is that Jim over there? no I’m not hungry dear you eat it you need it more than I do I don’t suppose there’s any brandy left I haven’t been to the shops yes a cigarette that would be nice thank you dear you’re so sweet to me I remember when I first met you no that was Molly what did you say your name was? no I can’t they caught two huge snapper and we had nothing but fish for days I wonder if Molly is all right I’ve had such a terrible headache for days dear you’ll have to excuse me I’d love to my son Eric charming but quite reckless do you have the right time dear? oh is it morning then? the mornings on the stations are spectacular only two or three I think red and green that’s the thing only a few more and that’ll be enough for one day roses need pruning of course but there are other better make some tea for the men James.’

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Gillian would story like this regardless of any response, regardless of any audience. I would often come into her room to find her talking to a physically non-existent ‘Molly’, but as soon as I addressed her she’d incorporate me into the story situation and look me right in the eye as she continued, sometimes hesitantly, sometimes blending the bits and pieces of her storying conversation into a frenzied passage or going suddenly silent as if waiting for answers. And sometimes, stroking my hand as I washed or turned her, she would say, ‘Molly?’ with such longing that I not only felt moved but intensely curious as to who Molly was, who Molly had been to her. As Minh-ha states, ‘We do not have bodies, we are bodies … We write — think and feel — (with) our entire bodies rather than only (with) our minds or hearts.’ 15 Though the bodies of those with Alzheimer’s Disease have, like all of us in this society, been crisscrossed by discourses which favour ‘reason’ over ‘feeling’, many people with Alzheimer’s Disease, because of their disease, have forgotten this and speak in a way which is more obviously kinesthetic. The famous French feminist theorist, Helène Cixous, who advocates ‘writing the body’, points out that women, in writing themselves, are, in a sense, reclaiming their bodies. She says, ‘Women have attempted to render noisy and audible all that had been silenced in phallocentric discourse.’16 When she insists that women ‘must invent the impregnable language that will wreck partitions, classes and rhetorics, regulations and codes,’ 17 she describes exactly what the storying by people with Alzheimer’s Disease often does, perh a p s

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inadvertently, perhaps even playfully. Although the storying by people with Alzheimer ’ s Disease is often difficult to understand intellectually, it may be possible to apprehend it at another level of the b o d y. If writing the body is possible, then why not listening (from) the body? Must we always put together fragments such as those in Gillian’s storying? Must stories always be complete? Perhaps, for most of us, our storying is not as incoherent and incomplete as Gillian’s but, I would argue, it is nevertheless not as coherent and complete as we would like to think. Our stories often take on the form of the kind of collage that Gillian presents. And this is because our bodies are malleable. This malleability is partly the result of physical and psychological changes, partly our varied and everchanging experiences of life and partly the effects of culture and discourse. But is is also due to our constant dipping in, as it were, to the unconscious or, as Kristeva describes it, the pre-conscious which she says ‘introduces a wandering or fuzziness into language.’ 18 In literature t h e re are many examples of this kind of language — James Joyce, Artaud, and more recently, and locally, Ania Walwicz’s writing, which often bears an uncanny resemblance to some of the storying by patients with Alzheimer’s Disease. But this pre-conscious ‘language’ can also take the form of, for instance, laughter, dance, rhythm, music, touch and nonsense, all of which exist in, and express themselves from, the interstices of our speaking bodies. Language then is not simply what we speak; it is what we are — and what we were before we

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began to speak — and what we do. In this sense, language and storying can be seen to be a performance of the body. So we are our bodies, the body is the self and, as such, is both a source and site of storying. This sounds really simple and obvious, but the fact that our bodies are a p p ropriated, constructed and manipulated by the cultures and discourses into which we are born makes it complicated. For instance, our storying is never really, ‘purely’, our own, just as our bodies are never totally our own. Our bodies are intersected time and time again with ‘stories’ about how we are ‘supposed’ to be. They are, from the moment we are born, inscribed with social and cultural expectations, coded with various ‘meanings’ (gender being the patent example) and storied about in such a way that to story the body, or to story the self, becomes a huge challenge. Of course, we don’t all story our bodies in the way that Bill did. What was striking about Bill’s storying was his specific reference to parts of his body which had ceased to function properly. When he denied his legs, he wasn’t simply explaining to himself, and to anyone within earshot, their lack of cooperation with his brain; he was also reclaiming ownership of what, after all, was his body and not the nursing home’s. Hence, I think, the rage and f rustration expressed in what seemed like bizarre outbursts of amazingly detailed narratives, many of which were obviously not true (for instance, he did have legs), was understandable. The storying of a disempowered person like Bill points

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to an important aspect of the everyday act of storying in general. When we story, we often re-create our bodies, explain our bodies, reclaim ownership of our bodies. So the act of storying can be a way of achieving a certain amount of autonomy. I really believe that the storying by many people with Alzheimer’s Disease is an attempt — sometimes successful, sometimes not — to regain a certain amount of self-sufficiency and control over bodies which have been taken over by the disciplinary techniques of the nursing home. I have to admit, I loved it: I loved the commotion, I loved the drama and the mischieviousness and the shouted storying by people who, like Bill, disturbed the equilibrium of the daily nursing home routine, resisted the controls, spat at the platitudes and lashed out (sometimes literally) at the mashed potatoes and mornays and nurses. Even outside the nursing home, people with Alzheimer’s Disease often suffer beyond the disease itself in that anything that they say that is not related to their immediate physical needs may be ignored. In effect, this is a dismissal that amounts to a gagging — of a storying that has the potential to provide, at the very least, enjoyment for tellers and listeners.

Nelly was still able to walk but would only do so if forced to. This entailed two nurses dragging her out of her chair and into the corridor. There, she would be c o e rced or bullied (she would be called ‘lazy’) into

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taking a few steps with a nurse on either side of her pulling her along. The ordeal would usually last about ten minutes and then she would be allowed to sit down again. Nelly would scream and struggle, yelling things like, ‘I’ve been crippled since the war you ignoramuses. Let me go. Let me BE!’

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5 C r i s s c rossing Stories

The story … gave me a nightmare. I woke in the darkness, my cheeks wet with tears, my body in that aspect of strangleheld seizure. I shall not now disclose the images I dreamt of, but say simply that I knew they derived from the story … … what is it in a story that permeates and alters, even into dreaming? Gail Jones, ‘Notes’1

We often say things like ‘that meant a lot to me’ or ‘that movie had so much meaning’ or ‘what she said was so meaningful.’ Joe meant a lot to me as a patient, as a person, as a friend. And maybe I meant a lot to him as a nurse, as a person, as a friend, as a fiancee. And now that I’m not a nurse, or even a student looking at the Joe Story as an amazing story experience, but a writer- p e r s o n looking back even further and wondering what it all

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meant intellectually, what it all means emotionally, I am again struck by how conundrumish the notion of meaning is. What is meaning? And how and why do everyday stories mean? We all bring to the stories we listen to bits and pieces of our own similar or dissimilar stories; narratives of our own experiences, expectations, readings and listenings. And we all have different ways of understanding these stories. I am not saying that the meaning of any story is dependent on the listener’s response but rather that meaning is multiplied by the variability of possible interpretations, all of which constitute another generative condition, another context, another reason. If a friend tells you the story of how his or her sister died, for instance, and you have also experienced a death in the family, your response to the story will probably be different from that of someone who has not had this experience. Whether you understand and can identify with the story or not, the way you apprehend and assimilate what you are told provides the story with one of many possible meanings; your response adds another layer of meaning to the story. Stories are always crisscrossed with other stories. They borrow from and are generated by other texts, whether implicitly or explicitly, intentionally or unintentionally, so that within each story there are always traces and kernels of other stories. This is what is known as intertextuality. I prefer to think of this as storyality — that interconnectedness of everyday stories — and that’s how I am approaching the more literary idea of intertextuality. Rick Rylance talks about how, with computer

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t e c h n o l o g y, ‘the idea of the intertext has become a material reality.’2 On a computer screen, texts can now be placed side by side, interwoven, superimposed on each o t h e r, and, of course, endlessly modified, enhanced, moved, replaced or just deleted. George Landow’s book, Hypertext, describes the endless possibilities of this kind of technology in terms of a software product called ‘Hypertext’ which can achieve all of the above and more.3 This, too, is intertextuality. It was Julia Kristeva who first coined the term ‘intertextuality’ and she points out that no text is an isolated phenomenon, that it always has an inter d e p e n d e n t relationship with the many texts which precede and surround it, and that each text is constructed from a huge array of both explicit and implicit quotations which it absorbs and transforms into its own. In Desire in Language, she says that the text is ‘a permutation of texts, an intertextuality’, and that ‘in the space of a given text, several utterances, taken from other texts, intersect.’ 4 A story, any story, any everyday story, is never an isolated utterance; it is always connected to another story and this is part of how a story is made to mean. The storying by Joe and David unwittingly embraced such connections but, paradoxically, was misunderstood as being disconnected. Intertextuality — storyality — entails a play of meaning — it entails slippages, contradictions, meshings and conglomerations of and between texts, between stories. Consider this illustration: you and your partner are visiting relatives who you haven’t seen for a long time.

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The conversation races. Everybody is talking at once and no sooner has one story begun than another takes its place so that the storying is fragmented, unfinished — and yet the overlapping connections are obvious. A baby is sitting on someone’s lap and, off and on, he becomes the topic of conversation that leads one person to story about their friend’s baby, or about their eldest daughter who was a beautiful baby, and another person to story about so-and-so’s new puppy who is treated like a baby because they can’t have children. And so on. A multiplicity of topics are touched on. The stories mingle and merge and ricochet off their similarities and d i ff e rences so that by the time you are leaving it is difficult to isolate one story from another because they have all blended into each other. The resulting collage is made all the more intriguing by the fact that the collective intertexts include a mixture of past and present, fact and fiction, sense and nonsense. This is exactly what the Joe Story was — a weird and wonderful mix of story, spanning nearly a century — of here and now, this and that, of Sarah and me, of the joyfilled plan of getting married in Fremantle all mixed up with commode chairs and vitamised food and ventolin (Joe was an asthmatic). ‘We’ll be married in Fremantle, my darling,’ he’d say to me, grinning up from the toilet or shower chair or bed or his dayroom chair. And it’s not as if he didn’t know he was there in the nursing home, trapped by all those positions — of course he knew and that’s why he got so frustrated and angry some of the time. And that’s why he thought and spoke and storied so

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much about Fremantle, about the wedding in Fremantle. I wish he’d told me more detail about the wedding but he never did give me a definite venue; he talked about a church, and about the blue sky, and about the blossoms (I guess he and Sarah were married in the spring), and, m o s t l y, about the sea. ‘It’s such a beautiful place,’ he reiterated constantly. Joe storied the past into the present so that it was breathable, even for me. That was the weirdest thing — that I could actually feel a strange mix of nostalgia and anticipation about this wedding in Fremantle that would never be my experience but which Joe allowed me, through his magical storying, to somehow partake in, retrospectively, imaginatively. He would take my hand and look up at me from his easychair and project the situation which was really a reminiscence, and I would, f l e e t i n g l y, feel the effects of a charm and a love that belonged to Sarah. Even more strangely (but maybe it isn’t strange at all), I sometimes see Joe in my own husband, or, at least, remember Joe and the Joe Story because of something Anthony says. So our life stories — Joe’s and mine — have crisscrossed at the juncture of our storying relationship. What I now realise is that this is not a unique situation at all — it is something which happens all the time and doesn’t r e q u i re that someone has Alzheimer’s Disease. The everyday act of storying relies on the crisscrossing of events, of experiences, of memories, hopes and dreams, if it is to work. It only works because of these intersections. How can it possibly work otherwise? And

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we all need to tell, to story, all these things — to give voice to something which is so profound. We do not connect silently — we are always compelled to story these connections in the best way we can, to make them understandable certainly, but also to make them, consolidate them, as felt. Meaning is mobile, multiplistic and malleable, but, again, what exactly is meaning? Fundamentally, of course, meaning is words or images signifying something. But meaning is not something fixed, or which can be owned. In everyday life, meaning is something which people constantly construct when they listen to stories. Sometimes the meaning that they think they derive from a story may have nothing to do with the story. Sometimes the story will be ‘misunderstood’ giving rise to a totally different meaning than the one held in the teller’s mind whether consciously or unconsciously. Sometimes a listener may say, ‘oh you mean …’ about something the teller has said, and the teller won’t know what they mean. When people listen to stories, they unravel, and prioritise, and construct (sometimes similarly, sometimes differently) a meaning out of what is always many layers of meaning. For the listener, the meaning is found in the listening response; the listener decides what the story means, how the story means, i f the story means. My response to storying by Joe and others exemplifies this and is the reason for this book. Harold Bloom goes as far as to say that in all reading (and in this sense, listening is the same as r e a d i n g ) meaning is ‘misinterpretation’ in that, in order to

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understand or interpret a poem, for instance, the reader must compose another poem.5 The same could be said of stories. What is implied here is that all reading, all reception, is not an act of interpretation but an act of recreation. In Ingelba and the Five Black Matriarchs, by Patsy Cohen and Margaret Somerville, a situation of storytelling is described in detail: The recording of the storytelling is full of life. There are many stories and voices, and the sounds of the landscape itself in the tape. While Hazel was telling her story of Grandfather Joe’s dogs, for instance, Ethel was having a conversation with Bob Wright about catching mullet down at George’s Creek and further in the distance the chattering and laughing of women’s voices could be heard. Occasionally sounds of the river and of the birds added to the atmosphere. When a particular story attracted attention, such as the story of the man who was drunk miraculously crossing the flooded river, everyone joined in at once with great excitement. Unfortunately the individual words were sometimes lost. The day generated its own stories too. Shortly after Ethel told the story of the woman-in-the-ant-bed she broke the heel off her shoe in a ditch. When she complained about the fact that her shoes were only new, Hazel, her older sister, told her that her shoe broke because she told the story. In this way new stories are added to the old …6 The meaning of any everyday story doesn’t stop with

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‘me’ the listener, but is continually mobilised and remobilised by the various meanings constructed by ‘us’ the listeners — meanings which are often contradictory and change through time. Also, the individual listener may change his or her mind about what a story means. What could be called my ‘first reading’ of the stories told to me by people with Alzheimer’s Disease, for instance, has now been displaced by my ‘second reading’. This indicates, of course, that the selfhood of the listener is not unified and uncomplicated but plural and contradictory. It also indicates that listening positions are influenced by something bigger and stronger than the teller, the listener or the story. Just as the selfhood of the teller is a culturally inscribed selfhood, so is the selfhood of the listener. So, not only do we speak, but we also listen, through the cultural discourses in and through which we live. And this is why the storying by people with Alzheimer ’ s Disease remains, for the most part, unread, unlistened to and devoid of meaning. My way of listening to the storying by people with A l z h e i m e r ’s Disease was, to begin with, a way of listening which was medicalised. The transformation in the way I listened was due partly to a changed way of p e rceiving people with Alzheimer’s Disease. Once I stopped seeing them through the lens of the medical discourse about ‘them’ and started seeing them through the lens of their stories and storying in general, I also stopped seeing them as diseased people and began seeing them as people. I think one of the reasons the stories told by people

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with Alzheimer’s Disease are often misunderstood as, or simply assumed to be (as Crisp puts it), ‘empty ramblings’7 is that listeners do not realise that there is more than one way of listening to these stories. In western society, the discourse of medicine permeates everybody’s life to such an extent that, as soon as someone shows signs of the disease, culturally constructed attitudes are immediately activated. As soon as a story told by a newly afflicted person doesn’t make logical sense, for instance, any further storying is automatically listened to in a new way — in, I would argue, a particularly critical way. Without realising it, listeners make a choice as to how to listen and, when people develop Alzheimer’s Disease, the choice is either to listen to them through ‘medical’ ears or to not listen to them at all. Often, there don’t seem to be any other choices. It is frightening to be a student and not understand the meaning of a particular text; it is frightening to be in an unfamiliar country and not understand the language; it is frightening to be a nurse, nursing people with A l z h e i m e r ’s Disease, and not understand what they mean. And it is frightening for people with Alzheimer’s Disease who are institutionalised when they don’t understand what is going on, or what anything means in the new context. The need for meaning, the need to relate to what is said or written is, in fact, a need to make meaning out of what might be confusing or unfamiliar. Often, as listeners, we don’t even realise that we have constructed the meaning of a story heard until we hear another, and another alternative ‘interpretation’ of the

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same story. Everyday conversations are continually punctuated with ‘I didn’t mean …’ or ‘but I thought she meant …’ or ‘no, I think what he really meant was …’ and so on. Leslie Marmon Silko’s retelling of a story which she calls ‘The Laguna People’ ends with the people turning into stone after they have just escaped the flooding of their village. Silko adds to this ending an explanatory footnote directed at westernised audiences: ‘The story ends there. Some of the stories Aunt Susi told have this kind of ending. There are no explanations.’8 Stories told by people with Alzheimer’s Disease are, similarly, unintentionally, subversive of narrative norms. They often seem fragmented, disjointed, unfinished. This ‘seeming’ is all to do with a coded way of listening of which we are mostly unaware. We all listen, and make meaning, according to all sorts of codes — linguistic, generic (is this a story? is it a serious story or a funny story?), and cultural (is this a romantic or pornographic story?). What these stories illustrate is that, first and foremost, meaning is realised via the listeners context; and if there is no response, there is no meaning. My point here is dual. Firstly, meaning can’t happen without an exchange between people. Secondly, this meaningmaking between people is conditioned and determined by institutional contexts, by life histories, by bodies, by surrounding discourses and texts and memories, and so on. There were two patients at the nursing home who had a somewhat unusual relationship. Dolly had Alzheimer’s

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Disease but Alan did not. In Dolly’s mind, Alan had replaced her long-deceased husband Harry. At first Alan found her attachment to him rather alarming, but after awhile he not only got used to it, he began to enjoy it. Before Dolly was admitted to the nursing home Alan had been a rather quiet man but somehow Dolly’s affection for him and her ceaseless chatter revived his spirits and gradually he became quite talkative himself. At first he just listened with interest to Dolly’s long monologues but soon he began to interrupt with his own anecdotes. Sometimes they would talk about us, the nurses, and their conversations would make perfect sense. Dolly would say, ‘She’s rather sweet that one but the other one — my goodness, she’s gru m p y,’ and Alan would say, ‘The grumpy one’s been here too long, that’s the problem. She doesn’t have any patience.’ But at other times their conversations wouldn’t make ordinary sense. For instance, Dolly would be talking about her old friend Mildred — ‘Those short skirts she wears Harry, isn’t it shocking!’ — and Alan (who, not being Harry, couldn’t possibly have known Mildred) would re p l y, ‘I never minded short skirts myself. My wife had lovely legs and when the fashions changed it was me that suggested she shorten her hems a little bit. My God she looked good.’ To which Dolly would whisper coyly, ‘Oh Harry! Yo u mustn’t talk about me like that! Everyone will hear you.’ Dolly and Alan seemed somehow able either to ignore, or to make use of, the inevitable inconsistencies which occurred almost every time they had a chat. Alan didn’t pretend to be Harry and he didn’t attempt to convince

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Dolly that she was mistaken. Instead, every time she said something which triggered something in his own store of memories and anecdotes he simply related (to) it. Dolly loved listening to him and, even though his stories were unfamiliar to her, she would look at him, sometimes a little bewildered, but always with great admiration, and s a y, ‘Oh, Harry, you tell such a good story.’ Then she would launch into one of her own stories, and her inventive skills were marvellous. Often she would either interrupt or pick up where Alan left off in such a way that the people he spoke of became her own ‘characters’. Alan often mentioned Patricia and Robert (his son and daughter) and it’s quite possible that Dolly had also known people with the same names. Or maybe she entered into Alan’s stories to such an extent that she felt she had also known these ‘friends’ of his. Or maybe she simply adopted them. But when I heard Alan say one day, ‘Patricia is very overweight, always has been ever since she was a child,’ and later heard Dolly whisper very confidentially to Alan, ‘I’m going to skip dinner today Harry, I’m getting fat like Patricia,’ I realised that she was borrowing from Alan’s stories. Even after Alan died (and his death left her grief-stricken), Dolly continued to talk about Patricia and Robert. This notion of intertextuality, or storyality — of storying play, of storying confusion, conflation, changeability — is necessary to any understanding of how storying works as an everyday activity, and of how stories are generated. Intertextuality is not simply the influence of one text over another. Instead, intertextuality

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describes a process of textual interplay — of crisscrossing — in which fragments of one story or text echo, borrow from, interrupt, disrupt, recombine with and contradict those of another. It is this dynamic, complex, unmappable process which gives texture and substance to our stories by multiplying the levels and layerings of meaning. The reason the storying by people with Alzheimer ’s Disease demonstrates this process so strikingly is that the intertextual layering and overlapping which occurs in their stories is, in many cases, more apparent than it would ordinarily be. Sometimes the blending of one anecdote with another, for instance, seems random, incongruous, even jarring. There is often a kind of childlikeness about these stories which is due, I think, to the tellers’ unselfconsciousness about blurring the boundaries between past and present, fact and fiction, sense and nonsense, belief and reality. The fact that these boundaries a re often ignored allows the crosslinking process of intertextuality to manifest more fluidly, despite what sometimes seems like incoherence. In other words, the storying by people with Alzheimer’s Disease so often ignores conventions of logic and situational context that intertextual linkages become all the more apparent. Stories mean according to the way in which they are heard and responded to. If unheard, if unacknowledged, they just dissipate. The Joe Story meant something because of the response it elicited; it only happened because of this response. Joe’s storying catapulted him from perceived rambler of meaninglessness to narrator of meaning. Even when his story of our romance was

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rejected or discouraged, it took root in that nursing home and will probably not be forgotten easily, because it was listened and responded to and so meant something. And this ‘meaning something’ was not just in terms of the story’s content; the act of storying provided Joe with a kind of ‘meaningfulness’ in the sense that this man, who had been unhappy for so long, suddenly became happy, almost carefree. It also ‘meant’ that, like me, a couple of nurses who had never taken people with Alzheimer ’s Disease seriously, began to listen to their stories differently. In this sense, meaning can also be seen to be what stories generate in terms of their s i g n i f i c a n c e t o people. In the several years since I began the thesis which has become this book, I have discovered many layers of meaning in the most seemingly disjointed of stories told in everyday life, not because my expectations have dropped, but because they’ve changed. And it is also in recognising my own meaning-making input to even the most coherent, and seemingly transparent, of stories, that I have realised the importance of the listener’s response to the construction of meaning; and also the importance of acknowledging the coded nature of this response. We don’t respond to storying from a vacuum or from a blank page; we respond with various coded or ‘programmed’ attitudes. My initial response to storying by people with A l z h e i m e r ’s Disease was laden with various cuItural assumptions. I thought I knew what to expect — and that was an absence of meaning. However my later response, after meeting Joe, involved a kind of decoding of those

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institutionalised assumptions. It needs to be remembered that, when the questions ‘what do you mean?’ or ‘what does it mean?’ are raised in regard to everyday stories, meaning is always culture and discourse specific, and always dependent on who is listening. For most of us, if our everyday stories don’t get to the point, or don’t seem to have a point or don’t end, it is not usually assumed that they don’t have meaning. This is because we all know that everyday stories do mean; that everyday conversations, in all their meandering unfinishedness, do mean. It’s just that they don’t mean tidily — you only have to remember the last conversation you had with a friend to realise that you — or they — forgot to ‘finish’ a particular anecdote, a particular story. Quite simply, everyday stories do not require coherence or closure to mean. Everyday storying, and especially the everyday storying by people with Alzheimer’s Disease, exemplifies intertextuality in important ways. These stories demonstrate that the process of storying never ends; stories generate other stories, borrow from other stories, become part of other stories, endlessly. What I have called ‘the Joe Story’ is a particularly good illustration of the intertextual process understood this way. As a text, the Joe Story has endless possiblities in terms of meaning. In Poppy, a narrative exploring the life of her mother, Drusilla Modjeska is conscious throughout of the fact that ‘my story forces itself across hers’.9 The book imparts a sense of two stories — the mother’s and the daughter’s — running parallel, merging at various points and rupturing

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at others, but, nevertheless, inextricably entwined. My storying of Joe, and other people with Alzheimer ’ s Disease, is similarly layered because my own story about him — what he said, what he did — overlays his story in such a way that the two stories, his and mine, become blended. In Modjeska’s story about her mother’s life, her mother doesn’t speak directly; Poppy’s stories are reported, and invented, by Modjeska. Similarly, in my storying about Joe’s stories, despite the fact that I quote him, his stories are also reported, or repeated, and, in a sense, reinvented or restoried by me. Nevertheless, in both cases, there is sometimes a sense of uncertainty about where the line is between one self’s storying and a n o t h e r ’s; between the stories as originally told, the stories as reported and the story about the stories. The circulation of stories in a nursing home is rampant and confused, whether or not there are patients with dementias like Alzheimer’s Disease. Often, everybody speaks at once and it is sometimes difficult to tell when, or how, or whether, stories are intersecting or simply crashing into each other. There are instances though w h e re the cross-linking of stories is very much in evidence — Dolly and Alan’s stories were not the only stories to form linked webs. My collaborative story experience with Joe, for instance, was cross-linked by his; and by my own, real-life engagement, as well as by the contributions of residents and nurses. Then there was Martin who, every time anyone said anything, would immediately enter into the conversation with his own related and unrelated anecdotes. And even the nurse’s

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handover consisted, to a large extent, of quotations — ‘You’ll never believe what Bill said to me today,’ and so on. Intertextual connections are not only made through similarity but also through diff e rence. Often it is the incongruities and discrepancies which spark a kind of chain reaction which allows one story to grip another and to make its mark. As Minh-ha puts it: The story never stops beginning or ending. It appears headless and bottomless for it is built on differences. Its (in)finitude subverts every notion of completeness and its frame remains a non-totalisable one. The differences it brings about are differences not only in structure, in the play of structures and surfaces, but also in timbre and in silence. We — you and me, she and he, we and they — we differ in the content of the words, in the construction and weaving of sentences but most of all, I feel, in the choice and mixing of utterances, the ethos, the tones, the paces, the cuts, the pauses. The story circulates like a gift; an empty gift which anyone can lay claim to by filling it to taste, yet can never truly possess. A gift built on multiplicity. One that stays inexhaustible within its own limits. Its departures and arrivals. Its quietness.10 This passage is evocative of how the meaning of any story is subject to its ebb-and-flow relationship with other stories. People with Alzheimer’s Disease often seem to be staring into space, an empty space right before their eyes. Then, suddenly, on hearing a fragment of story — the

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nurses chattering, a news item on the television, a patient talking to another patient — something clicks, and the person begins to story in a way which partakes of the ideas and images they have just tapped into. When a person with Alzheimer’s Disease grasps another’s phrase, borrows it and makes it his or hers for a split second and, in the telling, lets that fragment of story go, then the image of story as ‘empty gift’ to be filled and refilled is vividly demonstrated. But we all do this kind of thing every day and most of the time we don’t even realise we are doing it. You tell somebody something and months later you hear it back from somebody else, incredibly distorted or exaggerated — sometimes totally changed. The original story — the one you told — is still there but it has been supplemented, supplanted even, by the many stories which it incited. Its boundaries have been blurred, extended. The story is now multifarious, each subsequent version having borrowed from and expanded on a previous one, and the result is a mass of intertexts. Everyday storying is a great example of intertextuality in action, in life. The process of intertextuality cannot happen without the stuff-of-life circumstances which not only surround but generate, and are part of, any text. In the passage quoted at the beginning of this chapter, it can be seen that the stories being told (the texts, if you like) are textured by the happenings alongside the tellings, just as they are textured by new stories being added to, and generated by, old stories. As Gunther Kress puts it, ‘text and social occasion are always inextricably intertwined.’ 1 1 T h e

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narratologist, Ross Chambers, emphasises the importance of any ‘story situation’ to how a story works. He draws attention to the way in which everyday stories are generated by, but are also generators of, the life situations out of which they spring. He states that ‘meaning is not inherent in discourse and its structures, but contextual, a function of the pragmatic situation.’12 Chambers goes on to say that although there is some debate about whether there is any point in attempting to distinguish text from context, and that sometimes it is difficult to distinguish between the two, it i s important to recognise this ‘contextual nature of meaning.’13 The tape of the Ingelba storytelling session incorporates the sounds, voices, and events of life which all function as simultaneous intertexts of whatever story is being told. The tape-text has an immediacy which all stories told orally have because they elicit responses at the time of telling. And even though the tape ‘captures’ a particular situation of real-life storytelling, it is still, obviously, just a fragment-text of something larger, of something which is ongoing. It also points quite vividly to the fact that texts and stories are never finished products. The rehashing of stories according to what is happening now — at, for instance, Ingelba — is just one example of this. Everyday stories do not mean in a literal, linear way. In my view, the everyday stories which appeal to people do not do so because they offer a series of truths. They appeal because they express something which means something to the listener(s); something which the

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listeners can make use of or identify with. My listening to Joe, and the complex repercussions of this listening in terms of how it encouraged his storying, was a kind of ‘counter-listening’: a listening which went against the way I was positioned by medical discourse(s), against institutionally prescribed norms of nursing practice and treatment. And the more I listened and responded, the m o re Joe storied until the ‘normal’ nursing home nurse/patient relationship was transformed into a deeply felt friendship. My response to Joe has been misinterpreted sometimes as a manipulation, an experiment, even a joke. But my listening to Joe was not philanthropic, scientific or patronising. I knew what he was storying — he was storying love, and even if this love, which he thought he felt for me, was a r e m e m b e red love for someone from long ago (Sarah), I responded from my own experience of love and so it was easy to love in return. I did not listen and respond just in order to make Joe happy. I did so because I was drawn into his story of love — a story which made me feel and think differently about all sorts of things, which gave me enjoyment. Everyday storying often means in a way that is not simply cognitive but is also emotional. The emotional response of the listener is part of the way in which meaning is constructed by that listener. Often, this response is evoked by a single, simple, reverberant image. In terms of the everyday act of storying, responses are usually, or seem to be, spontaneous. Of course they are not spontaneous or ‘free’ since they are contextualised and generated by a complex mixture of the discursive,

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cultural, institutional and subjective, just as stories are. For instance, my initial response to Joe’s storying may have been inhibited by assumptions and prescriptions but it was also fuelled by emotional and experiential things. My positive response to his storying of his engagement was partly due to the fact that I too had become engaged and strongly identified with his excitement. But responses are also generated by the life experiences formed by these conditions: by memories and the emotional stuff of who we are and how we feel. Circumstances. What happens to you when you hear an everyday story is important. Your immediate reaction, your emotional response, the way you process and remember that story and, maybe later, retell it — all of this is part of that story’s meaning process. And your own response to, and assimilation of, that story is likely to develop, even mutate, as you think about it over time. Of course any emotional response to any story can only make meaning through the discourses which shape people’s understandings and feelings. My emotional response to Joe’s storying did not equate with what that storying meant. Rather, my response was already shaped by a life filled with Christian principles, with courtship norms, with patriarchal ideas about marriage, the female role, and so on. So, even though I stepped out of the medical discourse’s ‘rules’, I did not step into a void. My response to Joe was enabled and formed by other discourses of life — I responded with all my social and cultural and experiential baggage. And I am still confused — though not disturbed — by what seems, in retrospect,

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like a clichéd response to Joe’s proposal of marriage. Why did I let myself be ‘swept off my feet’ into a fiction, when I knew it to be a fiction? Why was my ‘yes’ response so automatic, my affection for Joe so natural, my acceptance of this fictitious engagement so easy, so enjoyable, so much fun? Perhaps I was drawn into this story because of my enculturation into the grand narrative of romance, or of compassion, or of risk. I’m not sure, but I do know that I was not, any more than Joe was, a blank page. Nobody is. Joe did not, nor did I, create this romantic fiction — it was already there. But this kind of response doesn’t usually happen when it comes to the storying by people with Alzheimer ’ s Disease. It doesn’t happen because of all the many reasons explored throughout this book, but also because, quite simply, listening to these stories is a bit like trying to ‘ read’ a dream — either yours or someone else’s. Sometimes, the illegibility of dreams equates with meaninglessness. What do you do with your halfremembered, indecipherable dreams? I know what I do: unless their imagery is striking, I dismiss them, I forget them. This is what happens to the stories told by people with Alzheimer’s Disease — like their tellers, these stories are dismissed, forgotten, discarded. Usually. It is often very difficult, and sometimes even boring, to listen to the storying by people with Alzheimer’s Disease (or anyone actually). It is difficult for nurses whose duties usually don’t include, or allow time for, anything other than the care of the physical body. It is difficult for carers who are related to the person, because they are often

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upset and unable to cope with the changes in personality, behaviour and communication which occur in the loved one. When stories told by people with Alzheimer ’ s Disease fail to follow the usual linear, logical pattern of the typical story, and instead resemble verbal collages, there is often an immediate rejection of the story because it seems impossible to understand. But to stop listening to people with Alzheimer’s Disease is not only to stop identifying with them but also to stop acknowledging them altogether. This exacerbates their confusion because, on top of everything else, they are excluded and rejected by people who supposedly care for them. When the storying by people with Alzheimer’s Disease falls on deaf ears, the stories themselves cease to mean. Before the events of the Joe Story unfolded, Joe would be told constantly by staff and patients to ‘shut up’. This only made him yell louder and eventually he would be wheeled into his bedroom and the door closed on his shouting. It never occurred to anyone to actually listen to him, or to answer him, the assumption being that people with Alzheimer’s Disease don’t know what’s going on anyway. Why bother responding to them? In The Validation Br e a k t h ro u g h, Naomi Feil ar g u e s convincingly that, when caring for people with dementias, it is vital to keep the lines of communication open. Over the years she has developed a technique called ‘validation’, now recognised as an effective new therapy for older people with Alzheimer’s Disease and other dementias.14 Feil formulates fourteen ‘techniques’ of validation, which are based on assumptions about people

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with Alzheimer’s Disease which subvert the object status that medicine gives them. The assumptions of validation a re: that these people are unique and valuable individuals; that there are always reasons for their behaviour (physical, social, psychological); that they cannot be forced to change; that their ability to retrieve early memories is a way of compensating for r e c e n t memory loss; that painful feelings (which may be due to unresolved issues in their lives) need to be expressed, acknowledged and validated by carers who are empathetic; and that, if this doesn’t happen, the problems get worse. These assumptions are another way of saying that people who have Alzheimer’s Disease should be viewed as human beings as well as patients, that they are able to story and that they are worth listening to. When recent memory fails, Feil says, these people ‘try to restore balance to their lives by retrieving earlier memories. When eyesight fails, they use the mind’s eye to see. When hearing goes, they listen to sounds of the past.’15 The techniques Feil proposes are all to do with the kind of listening response which affirms rather than ignores or rejects what people with dementia say. It is beyond the scope of this book to reiterate these in detail; what is most important about these techniques, which have now been formalised and are taught throughout the world, is that they all pivot on the act of listening, of daily ‘genuine open, nonjudgemental, empathetic listening’.16 Listening becomes an important part of an empathy which ‘builds trust, reduces anxiety, and restores dignity’.17 What is striking about Feil’s techniques is their

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commonsense simplicity. It bothered her that patients with Alzheimer’s Disease who verbalised were seen to be disruptive and were restrained in chairs and beds, told to be quiet, or sedated. The care of the physical body is prioritised in nursing practice to such a degree that listening is devalued. Mary, who had been living in the nursing home for some years, was a tiny, shrill woman who was never silent. Her dramatic monologues — often resembling something out of the latest thriller and featuring Mary as either the swooning heroine or the strong independent woman under attack — didn’t quite make the grade in terms of credibility. Because no one believed her, no one took her constant storying seriously; her ever-changing plots were too hard to follow, let alone understand. The irony, in terms of nursing care, was that the less the staff listened to or acknowledged her stories, the shriller Mary became. But it never occurred to anyone, including me, to respond to what she was saying by asking her what she was talking about. Most of us simply called the sister and waited for drugs to be administered. In the meantime, we would either leave her screaming or try to pacify her with inane words of comfort, which I now see were not a response to her storying but an avoidance of it. Feil claims that fear, which may take over the whole life of the person with Alzheimer’s Disease, can be resolved or at least mitigated through the use of validation. It is ironical that the object and abject status of people with dementias like Alzheimer’s Disease is so entrenched that it has become necessary not only to teach carers to listen to

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them and to be empathetic, but also to teach them how. Somehow, because of the Alzheimer’s Disease label and the subsequent object status of people with the disease, even the obvious terror of people like Mary is not taken to be real fear but an imagined fear. Mary was often referred to as ‘silly’, or ‘crazy’, and this crazy label seemed to dull the effects of her frightened screaming on even the most compassionate of nurses in a way which wouldn’t have happened if she had not had Alzheimer’s Disease. Mary suffered real fear, which may have been due to physical pain, but, despite her shrieks, nobody heard her. For Mary, both fear and, I suspect, pain were invalidated. Even though Feil now teaches or supervises the teaching of validation (she is the executive director of the Validation Training Institute in Cleveland, Ohio), she emphasises that it is she who was taught by the very people who she now teaches about. It is worth quoting her description of her own learning curve, because what she describes is the act of listening and its power to change things. The very old disoriented people taught me. I learned from their social histories, their families, their nurses, and their friends. I learned by mistakes. I learned that very old disoriented people have an intuitive wisdom, a basic humanity that we all share. Behind their disorientation lies a human knowing. This humanity stretches beyond present time, culture, race, geography, and religion … When recent memory goes and time blurs, very old people begin to measure life in terms of memories, not minutes …

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They find much wisdom in the past.18 My own experience of listening to and acknowledging Joe and the repercussions of this in my changed attitude to other people with Alzheimer’s Disease was similarly epiphanic. In The Validation Breakthrough Feil cites many stories told by people with Alzheimer’s Disease. In all my re s e a rch, Feil’s is the only work, apart from Crisp’s, which, as a legitimate and authorised component of what I have called the medicalised discourse of Alzheimer’s Disease, talks about listening to people who have this disease. It is also the only work that takes them and their stories seriously, which acknowledges that these stories do mean something. Feil’s approach is more formulaic than my ‘everyday’ approach, but in an institution like the nursing home, with its very fixed regime of routines, it is pr o b a b l y necessary to formalise the seemingly simple axiom ‘listen to people with Alzheimer’s Disease’ for such a therapy to be incorporated effectively. What makes Feil’s work exciting is that it is not simply theor e t i c a l ; according to Sharon Stoffel, Professor of Occupational Therapy in Minnesota, validation therapy is used in many places with excellent results. Listening to, and validating the storying by people with Alzheimer ’ s Disease has proven effective in nursing homes — patients become more contented and staff become more understanding so the r e p e rcussions are mutually beneficial. But the most important aspect of Feil’s work

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is the way it de-objectifies patients with dementias, and in so doing, validates their storying as a meaningmaking process in which listening becomes a pleasure rather than a task or a non-event. The Joe Story taught me a lot about the act of listening and its power to heal and to give pleasure. But Joe was not the only one to benefit. Listening to him had a profound effect on my life too in that it opened my ears to others who had interesting and valuable stories to tell. And, whereas previously I felt somewhat ambivalent about going to work, I began to look forward to it — to hearing the next ‘chapter’, and to seeing Joe, Dolly, David, Nelly and other patients. It was a bit like looking forward to the next episode of a mini-series and knowing you would be watching it with someone you liked a lot. I hesitate to say this, in case I am misunderstood, but it was also a bit like falling in love — the excitement and anticipation, the curiosity and the not ever quite knowing what was going to happen next. If listening to someone’s story is a bit like falling in love, then it has to be admitted that the act of listening is an underestimated source of powerful feelings. And these feelings generate new ways of responding to stories told by people with Alzheimer’s Disease. Emotional responses to storying (which are also, of course, cognitive responses) have the potential to enable new meanings and new ways of listening. The quote which begins this chapter is Jones’ response to Beth Yahp’s short story, ‘In 1969’. Her response draws attention to the way, as listener-readers, we (ourselves) are penetrated, physically, psychically and emotionally by

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stories. These stories mean more than what they mean l i t e r a l l y, because we continually supplement their meanings with our interpretations and with our identifications — not just with the stories but with the storytellers. Also, we continually absorb stories into our everyday lives by feeling and re-speaking what they mean in terms of their significance to us, and for us. Isn’t this the essence of gossip, that most common form of communication, of storying? The everyday act of storying is generated and made to mean by the variable responses which it elicits. It is these responses which unleash meanings which are unpredictable, poetic, infinite; which we are, nevertheless, able to describe in a multiplicity of different ways; which are made tangible by the way stories make us feel, and by the way stories can effect changes in our lives. To my mind the listener’s listening response is the most vital of contexts. Without this, these stories go nowhere, stopped short of meaning anything to anyone by their lack of reception. But, as Crisp’s and Feil’s work — and my own experience — illustrate, when these stories are listened to, taken seriously, responded to and thereby validated, the act of listening can be seen to be a powerfully emancipatory a c t of meaning and of change. The everyday act of storying cannot work effectively without the listener because it is the listener who decides what the story means and if the story means and who generates those meanings accordingly.

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‘How was work?’ my friend asked. ‘Joe proposed to me.’ ‘Who’s Joe?’ ‘You know, that guy … anyway, I said yes.’ ‘You what?’ ‘Well, I’ll tell you what happened … I was showering him and …’ ‘Look, no offence but it sounds too weird. So what’s happening on the weekend?’

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6 Memory and Imagination

[T]hat is the way I think of the short story and what is part of it, the sketch, anecdote, jokes cunning, philosophical, and biting, legends and fragments. Where do they come from? Who invents them? Everyone perhaps. Who remembers them so that they pass endlessly across city life? I know some of those marvellous rememberers who pass on their daily earnings in story; and then they are forgotten to become fragments, mysterious indications. Any treasury of story is a residue of the past and a record of the day … Christina Stead, Ocean of Story1

Halfway through reading Elizabeth Jolley’s Cabin Fever I had the most uncanny sense of déjà vu and it took me a while to realise that I had ‘met’ Vera before, in Jolley’s previous novel, My Father’s Moon. Each story, including the more recent, The Georg e ’s Wi f e, is seemingly selfcontained and there is no explicit re f e rence to either

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previous or forthcoming stories. The character of Vera features in each novel as a person whose life journey is saturated with the events of her past. Everything that happens to her in the here and now is richly textured with these memories. Jolley’s citations of Vera’s past, fro m novel to novel, cause Vera’s character to unfold in a fragmented way. She is not a linear, coherent character; rather, she is constructed through a collage of hints and glimpses. Her thoughts meander back and forth in time and space throughout the three novels. Vera is not just who she is at the end of each novel, she is also who she was. The past events of her life, continually restoried in the present, become an intrinsic component of this present, this ‘now’. The three novels, told from Vera’s point of view, are like a collection of (her) life stories, all interwoven and all dependent on each other.2 Jolley demonstrates vividly the process of intertextuality, that crisscrossing of story, with her character Vera. Vera is not a real person, however she is like a real person. Her character does what we all do when we story in everyday life. We all bring to the stories we tell our past, our history and the many stories we have already told, h e a rd or experienced. Most of the time we do this unconsciously — what we were is so much part of what we are that we often don’t even realise that we are referring to the past in our stories. In The Pleasure of the Text, Roland Barthes describes this intertextual movement as ‘a circular memory’.3 Memories of the past that infiltrate stories told in the present can be described as intertextual rememberings

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which contextualise and generate the stories we tell on an everyday basis. To call these memories intertexts is simply to acknowledge, or validate, their presence in stories told in everyday life. Obviously, even if memories are not admitted, they are still intertexts, they are still c i rcumstances worth acknowledging; memories, even when they are not verbalised, exert a subconscious, or even an unconscious, pressure on the meanings derived from whatever story is being told. Memories function as storied traces of what has already been done, seen, heard and read. Sometimes these memories may not be conscious or acknowledged. They may be, as Barthes puts it, ‘anonymous, untraceable, and yet already read: they are quotations without inverted commas.’4 I suppose for me, the bottom line — and what I’ve learned from this study, this experience — is that to a large extent we all bring to every storying experience our memories, our past. For Joe to re-story the small front lawn of an urban nursing home as a place in Fremantle cooled by the sea breeze; for David to re-story a nursing home door as his shed door from long ago; for Dolly to imagine Alan as Harry … all of these re-imaginings of the present do not differ so greatly from the way we all bring our past stories into those we are telling now. The everyday stories told by people with Alzheimer’s Disease often refer to the past in a way which draws explicit attention to the intertextual nature of all storying, if only because often the past is not recognised as the past. For instance David, who was always trying to go home,

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didn’t recognise the difference between the past and the p resent, between memory and the present re a l i t y. He didn’t realise that he was storying memories; he thought he was talking about the present. And, to a certain extent, his memories were able to function for him, through the act of storying, as the here and now. Joe also, and in a much more dramatic way, textured his stories of now with stories of long ago. He managed to combine past and present in a way which helped him cope with the present, and he did this through storying. So both men were able to derive comfort from their references to the past, their memories, without realising exactly what they w e re doing. And don’t we all do this in terms of our unconscious memories? Alzheimer’s Disease, which is often seen to be a disease of the memory, doesn’t necessarily obliterate memory. It’s m o re a case of memory, released and disrupted by disease, functioning dif f e re n t l y. When people with Alzheimer’s Disease tell stories about people and things that no longer exist as if they did still exist, this underscores the powerful effect of the past on the present. As David Thelen points out, ‘people’s memories provide security, authority, legitimacy and finally identity in the present.’5 It is this important aspect of memory which is demonstrated so poignantly by the storying by people with Alzheimer’s Disease. Paula Hamilton talks about how historians like herself ‘are often confronted with stories of personal pasts that are ways of making sense of contemporary dislocation and loss in the lives of old p e o p l e . ’ 6 The storying by people with Alzheimer ’ s

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Disease relies heavily on these intertexts of the past and without them the stories themselves wouldn’t work. As Jack Goody succinctly puts it, ‘that which is not carried in memory has disappeared for good.’7 My father died twenty-two years ago, so of course my stories of him are told in the past tense. But I am still unable to express my love for him in the past tense; I find it difficult to say to myself, ‘I loved him.’ My love for him is still a present-tense experience for me even though he is no longer here. And when my grandfather died recently I was struck by the realisation that when a loved one dies it is difficult to relegate your feelings for them to the past when you still feel those feelings. Some of the stories told by people with Alzheimer’s Disease are extr e m e l y moving because they so openly express a love (experienced in the now) for things, people, places and events which have long since ceased to exist. They gain poignancy because they demonstrate the way in which people with Alzheimer’s Disease lose the connection between story and situation. Nevertheless, their storying does illustrate how the past marks itself in memory, so that memory becomes the intertext which sometimes confuses the tenses in our storying. When we story, we story a collocation, a mix of past and present. The everyday act of storying is not tidy, it is messy. It is continually interrupted by intertexts like those of memory, which it then absorbs. As Salman Rushdie puts it, An oral narrative does not go from the beginning to the middle to the end of the story. It goes in great swoops, it

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goes in spirals and loops, it every so often re i t e r a t e s something that happened earlier on to remind you, and then takes you off again, sometimes summarises itself, it frequently digresses off into something that the story-teller appears just to have thought of, then it comes back to the main thrust of the narrative. Sometimes it steps sideways and tells you about another related story which is like the story that he’s been telling you, and then it goes back to the main story.8 What sometimes seems like extreme messiness and confusion in the stories told by people with Alzheimer’s Disease — disjointedness, sudden changes in direction and so on — is really just an exaggerated version of what we all do when we story. We all digress and this digression is the very movement of intertextuality, of the crisscrossing movement of storyality. What I am calling the intertext of memory (or, to be more exact, specific memories such as scones baked on a certain day, shed doors, and parties) is further complicated by the question of cr e d i b i l i t y. When memories are referred to in a story, are these memories to be trusted? Are they ‘true’? For historiographers, whose work often depends on oral history, the intersection between memory and history has always been problematic. Ruth Finnegan points out that when oral texts change over the years this change has often been attributed to ‘faulty memory’. 9 And Hamilton tells us that concerns about the inaccuracy and selectiveness of m e m o r y, as well as the tension between what an

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interviewer might want someone to say about the past and what they might actually say, has led to a more sophisticated approach to memory itself and the act of remembering. Since the 1960s, she says, historians have become more aware of the ‘“re t rospective and fluid” character of memory.’10 And, as de Certeau points out, all historical accounts, no matter how much they pretend to be factual, contain ‘fictive aspects’.11 The fact is that people remember things differently. Family reunions are a good example. People who haven’t seen each other for years get together and reminisce. The reminiscences produce discrepancies, arguments ensue. The reunion becomes a site of, or a source for, conflicts to do with memory. According to a group of writers who call themselves the Personal Narratives Group, ‘When talking about their lives, people lie sometimes, forget a lot, exaggerate, become confused, and get things wrong.’12 And Donald Spence starts his discussion of narrative and historical ‘truth’ by stating that one of Sigmund Freud’s most dramatic achievements was to make clear ‘the illusory quality of memory’. He goes on to say, ‘Although the memory has a feeling of being closer to the r e a l experience, it was Freud’s genius to show how this sense is often illusory and how both memory and dream belong to the same group of wish-determined phenomena.’13 Joe, David and Dolly’s storying of a wished-for past does not seem unusual when seen in the light of Fr e u d ’ s exploration of the link between memory and fantasy. One of the things which struck me about the storying by people with Alzheimer’s Disease was the way it

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demonstrated how the power of a single image can convey a story without further explanation being necessary. For instance, I have a very clear picture in my mind of Joe and Sarah’s wedding day. And another instance was provided by Mary, who was in the last stages of Alzheimer’s Disease and would scream ‘It’s a knife, take it away, take it away, don’t let them … it’s a knife. Help!’ At other times she would whisper (in reference to a nurse or doctor), ‘See that man? He has a gun. Can you see it, can you see it? It’s in his pocket. He’ll shoot us when we’ve gone to sleep, please help me, dear, call the police. No, don’t let him near me!’ She seemed to be haunted by images of death and violence and was constantly afraid. None of us had any idea what she was referring to, whether it was a memory, or an imagined incident, but her fear, embodied in the darkness of the images she used, was potent. In a completely different way, Nancy seemed to have a collection of images which were like stills taken from a film. Her storying revolved around these images of people she’d known, and the ‘stills’ she r e i t e r a t e d verbally obviously had a powerful effect on her because she repeated them often. Her story of an elderly woman who used to look after her after school is one example. ‘I’ll never forget the way Mrs Grace entertained her guests,’ Nancy would say. ‘She would always seat herself so as to be at the centre of attention, in a very fancy chair which looked like a throne. Behind her head she would always make sure there was a vase filled with white roses. It made her look regal, a bit like a crown or a halo.’

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Another story Nancy told was about an early memory of a nephew she was fond of. Long ago, she and her ‘beau’ had begun meeting secretly in a small, tree-filled gully adjacent to his parents’ house. One evening, soon after they began their courtship, ‘we heard a noise, and looking up towards the crest of the hill we saw my beau’s young brother dancing about as free as a bird. But he didn’t know we were there. For several evenings we watched him dancing until one night I coughed, and the youngster heard us and got frightened and ran back to the house. He never did it again, but I’ve never forgotten the sight of it — he was so beautiful.’ Both these stories were of things which had happened over half a century ago but they were still vivid in Nancy’s mind. The fact that she repeated these stories, and many more, over and over again as if they were brand new was indicative of her Alzheimer’s Disease, but it also indicates that she valued these memory images. One of the most interesting aspects of Nancy’s storying was the way she positioned herself as a kind of ‘re-reader’ of the images she remembered so vividly. As a result, these two stories made similarly vivid impressions on anyone who listened. Nancy’s memories were something she obviously took great and repeated pleasure in; they had a credibility and a power of expression which made her face light up. Her fragmented storying was reminiscent of the way poetry can conjure the codicil that makes you feel or remember a moment, thing, event with such intensity that you feel it all over again. Her storying also reminded me of Marcel Proust’s work and the way,

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in Remembrance of Things Past, a crack in the pavement brought him to a shocked standstill of memory and a rush of story — or storied memory — to the brain. In Nancy’s story of her young nephew it was obvious that she identified with him in a vicarious way. She seemed to both delight in and envy his dance of youth and innocence. His ‘character’ was like a metaphor for what she had long since lost but still wanted to (and did) identify with. She never told this story with regret, she seemed to absorb the joy of the dancing nephew as she told the story. Her eyes would twinkle with a happiness that she somehow shared with him. ‘That’s the sort of person he is,’ she’d say with affection, ‘a free spirit’. When I was working as a nurse, the storying by many people with Alzheimer’s Disease often seemed to me to bear a striking resemblance to dreams; the stories seemed dream-like. This was partly because, as Freud put it, in dreams, ‘Little attention is paid to the logical relations between the thoughts.’14 But it was also because many of these stories expressed wishes as if they were f u l f i l l e d (Joe’s storying is a wonderful example of this), and, as Kaja Silverman explains, ‘The dream is a wish-fulfilment many times over.’ 15 She goes on to say that the simplicity of dreams ‘belies the extraordinary effort’ of the unconscious to discover ‘a single image’ capable of supporting what are sometimes several references.16 And this is what many artists strive to do, of course — to c a p t u re, either in their painting, drawing, writing or performance, that single, powerful image. That moment, that memory. Marcel Proust’s work painstakingly unfolds

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this artistic, human process in his descriptions of the reverie, the daydream; of how a single, tiny sign, like a crack in the pavement, can mean a lifetime of feeling, a world, a dream geography. These various descriptions of the dream are, I feel, uncannily similar to descriptions which could be made about the stories told by people with Alzheimer ’ s Disease. These stories are often illogically put together, often contain dreamwishes — or wishes which are fulfilled in and by a storying which often pivots on a single image. The images conveyed in these stories were obviously vividly felt by the tellers. My own assimilation of these and other unforgettable images, and my own emotional input in terms of what those images might re p resent is not, perhaps, a typical response to the storying by people with Alzheimer’s Disease, but it is a typical response in terms of how people generally listen to stories told in everyday life. Powerful images are generated by powerful feelings. And the act of storying, like art, like poetry, often offers to the recipient a single image which sparks an emotional response, a response which resees and restories that image. Memories are often distorted or exaggerated, and memories themselves are intertextualised by the things that are forgotten or repressed. Trevor Lummis points out that ‘problems of omission, suppression, and selectivity … may favor a recall of memories pleasant rather than unpleasant.’17 This is often the case in the storying by people with Alzheimer’s Disease. Dolly seemed to have only retained memories of pleasant or exciting occasions.

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These she embellished in slightly different ways each time she storied. It didn’t matter to her whether these memories were ‘accurate’ or ‘faulty’. Dolly (I think, but I’m not sure) recognised that her storying was full of fictional intertexts. I’ll never know whether she was intending to fictionalise, or whether she was intending to tell the ‘truth’. I’ll never know this about any of the stories told to me by people with Alzheimer’s Disease. I’ll never know this about any of the stories told to me by anybody. How does anyone know that the stories they are told in everyday life are ‘true’? As Barnes says, we all ‘fabulate’.18 And if we fabulate about our past, this is because, as Spence puts it, ‘The past, always in flux, is always being c reated anew,’ b e c a u s e ‘new descriptions’ continually redescribe ‘early memories’.19 We all make things up. As Ursula Le Guin explains: We talk about what may be, or what we’d like to do, or what you ought to do, or what might have happened: warnings, suppositions, propositions, invitations, ambiguities, analogies, hints, lists, anxieties, hearsay, old wive’s tales, leaps and crosslinks and spiderwebs between here and there, between then and now, between now and sometime, a continual weaving and restructuring of the re m e m b e red and the perceived and the imagined, including a great deal of wishful thinking and a variable quantity of deliberate or non-deliberate fictionalising, to reassure ourselves or for the pleasure of it, and also some deliberate or semi-deliberate falsification … and no sooner have we made one of these pattern of words than we may

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… laugh, and arise, and unbuild it again.20 So the everyday act of storying is intertextualised not only by our remembered past, but by our imaginative recreation of this past. During a panel discussion at the 1997 Perth Wr i t e r ’s Festival, Glenda Adams stated that memory doesn’t ‘lie’, because truth is not a commodity inasmuch as ‘truth changes’. Both the memoried and imagined incidents we relate have an interd e p e n d e n t relationship. As Le Guin points out, stories are never fixed wholes and the presence of intertextual elements, whether they be imaginary or factual, reveals the malleable nature of storying. We can always ‘unbuild’ our stories and refashion them; we can always omit, embellish or reorder the fragments, the citations, the bits and pieces of other text(s). The way in which people with Alzheimer’s Disease use fragments of memory, fragments of imagination, and fragments of the reality of the here and now to construct their stories is exemplary of the intertextual nature of all storying. Even though they often do this in a much more pronounced fashion than those who don’t suffer from dementia (for instance, in their often total disregard, or unawareness, of the storying situation), their storying still points to the intertextual pattern that can be seen in all everyday acts of storying. Their storying reveals the texture of all storying: the different layers of a sometimes imagined past superimposed on each other like transparencies, so much so that it is sometimes difficult to differentiate what Rushdie would call the ‘main story’,

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from the many and varied intertexts or palimpsests which contextualise and generate it. In real-life situations of storytelling, sometimes s t ru c t u red as in the Ingelba example, sometimes unstructured as in the Dolly and Alan example, stories c ross-germinate each other constantly. When we hear stories, and even when we read them, we are constantly (often unwittingly) relating them to other stories we have read, heard, seen or experienced. More importantly, often we confuse or blur the boundaries between one story and another. This, too, is part of the intertextual process. It could be said that there now exists a discourse of A l z h e i m e r ’s Disease, a subset of the discourse of medicine, a body of knowledge about a disease and its victims, which is only now beginning to admit into its important and authorised talkings the stories of these victims, and which perpetuates ‘truths’ about the disease and diseased into the general arena. The storying by people with Alzheimer’s Disease constitute a paradoxical, unabsorbed component of this discourse. Mostly, it is ignored. But sometimes it has a penetrative effect — a generative effect — on everything else that is said. The stories I cite in this book, told by people with Alzheimer’s Disease, are stories which completely transformed my view of the disease and its victims, so much so that the i d e a of a diseased victim unable to make sense was replaced with the idea of a person telling me an interesting story. One of the things I admired most about the storying by people with Alzheimer’s Disease who I nursed was the way people like Joe, who were so close to death, could

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speak so enthusiastically about life. My own reception of these stories enabled a transformation of my attitude and behaviour towards people with Alzheimer’s Disease — those ‘objects’ whose storying mostly ricochets off the outer ‘wall’ of the discourse within which they ‘live’. So my reception of these stories, and this book, is an example of a kind of resistance-in-waiting (for change). This waiting is not passive, it is active. This waiting for discursive change is a bit like pressing the pause button during a video so you can see something more clearly, think about it, figure it out, question it; it’s a bit like exploring the space between what happens and what might happen. Foucault’s invitation to rethink, to reexamine or re-explore the nuanced nature of the various discourses in and through which we live and speak is inspirational in that it allows room for movement in that space, in that pause. And this movement of waiting can be thought of as ‘tactical’ (to refer again to de Certeau). Like the storying by many people with Alzheimer’s Disease, it, too, can be disruptive. The storying by many people with Alzheimer’s Disease is like a symphony of disruption. Turning up the volume of this symphony so that it is, somehow, ‘hearable’ is one way of breaking, permeating, or, at least, questioning the discursive context of Alzheimer’s Disease, thus revealing its malleability — the possibility of its changing.

‘Why do you want so much to get married in Fremantle?’ I asked Joe.

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‘You know why, Sarah … It was so beautiful, that day, you all in white. I just think it’s best to do it right. It’ll be fine, don’t you worry yourself. I’ll be on my feet by then.’ ‘Are you joking or for real, Joe?’ ‘Aaah, you’re arguing with me again, Julie.’

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7 Collaborative Performances

There is the idea of the story-taker, the necessary collaborator in the act of telling, the one who listens, shapes the narrative by assuming that there is something there to be told; who takes the story, not as appropriation, but as part of a deal, so that the outcome — an entity, a story — might be placed there, in the space between the listener and the teller. The presence of the story-taker wards off the question ‘So what?’ Carolyn Steedman, Past Tenses1

Evelyn had been living in a nursing home for five years before I began working there. She, like many other people with Alzheimer’s Disease, had been placed there by her family soon after the onset of the disease. Unlike many others, though, Evelyn was visited often by a family member. Every Saturday, Evelyn’s daughter Susan would come at around ten o’clock in the morning and leave at about three in the afternoon. Evelyn would speak to

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Susan as if she were a stranger and yet at the same time she would confide in her; she’d tell her that the food was rotten, that someone came in every night and stole her best clothes while she slept, that a man would often come to the window just as she was going to bed and leer at her, that the nurses couldn’t be trusted. And so on. Susan was one of the rare people, like Crisp, who accepted her mother’s condition, who took part enthusiastically in her storying and who laughed, and made her mother laugh with her responses. She never seemed to mind that her mother didn’t recognise her as a daughter or even as the same person who came every week to visit. Susan was accepting of the way she and her mother had to begin again every week to get to know each other, only for it all to be forgotten again by Evelyn before the next week’s visit. Susan’s attitude was unusual. If she were sitting with her mother, talking, and we passed by the room doing our rounds, she would invite us in to listen to her mother’s latest confabulations. Everyone, including Evelyn, would end up roaring with laughter at these anecdotes. Evelyn would say, ‘He came again last night and I put the light out so he couldn’t see me but I could see him. I was going to scream but last time I did that he disappeared … his face was pressed up against the window and his nose was all squashed up, you know? So I got up and went to the w a rd robe to get the gun. I thought that’d give him a fright. But the gun was gone. Those nurses took it! I’ve complained to the matron about this sort of thing before … and this is supposed to be a good place. I was in charge

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of sixty nurses and a hospital three times this size and I could have done a better job blindfolded.’ Susan would say, ‘What happened to the man then, Mum?’ And Evelyn would give her a scornful look and say, ‘What man? Don’t call me ‘Mum’ for goodness sake, I’m not an old woman and anyway my daughter’s much slimmer than you, dear. You’ll get that [pointing to Susan’s stomach] off in no time with a brisk walk every day.’ Instead of being upset, Susan would laugh, put her arm around her mother and say to us, ‘She’s not bad is she?’ and Evelyn would suddenly return the embrace, saying, ‘There, there, dear, it’s all right.’ Susan’s attitude to her mother appeared to be devoid of the anxiety and distress which so many people seem to feel when dealing with family members who have developed Alzheimer’s Disease. She respected her mother for who she once was (a powerful and competent matriarch, a widow for thirty years, a mother of three and, ironically, a matron in a nursing home for twenty years). But Susan also respected her mother for who she s t i l l was, despite the disease. When Evelyn made the nurses laugh with her stories, Susan would beam with pride and say, ‘Mum’s such a character isn’t she?’ Susan, in effect, became the mediator of Evelyn’s storying. Her obvious enjoyment of, and pride in, her mother ’ s storytelling abilities caused the nursing staff to listen to Evelyn even when Susan wasn’t there. The fact that Susan listened seriously to Evelyn legitimised Evelyn’s stories, which otherwise, would have been dismissed as nonsense by the staff. One person’s act of listening, one person’s

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collaboration, helped change the collective and general response to Evelyn. But the storying between Evelyn and Susan was, in my experience, a rare scenario. People with Alzheimer ’ s Disease are institutionalised because they no longer ‘fit in’, they no longer behave or speak in socially acceptable, or assimilable ways. They may be difficult to care for. It may become impossible, for instance, for an ageing spouse to care for someone who has become incontinent or has begun wandering. It may be heartbreaking to care for someone who screams out or who strips off their clothes. Institutionalisation, and the assurance of professional care, may be the only alternative. But it isn’t simply the unacceptable and often embarrassing behaviour of people with Alzheimer’s Disease that leads to their institutionalisation (an institutionalisation which often means a cessation of their relationships with family and friends). It is also the conversational diff i c u l t i e s experienced by both the person with the disease and the family members or carers. In other words, the disconnected and fragmented nature of what people with Alzheimer’s Disease often say becomes unassimilable for the recipient. Their stories often seem extraord i n a r y, nonsensical and frighteningly detached from the reality of present situations. I think this is why so many people with Alzheimer’s Disease are not simply institutionalised but, literally, abandoned in nursing homes. In one of the nursing homes in which I worked, there were always thirty-two patients (and a rapid turnover of this population due to deaths); yet, in a two-year span, I met

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only four relatives. One of these, Susan, visited every week; the others visited only at Christmas. Obviously this is not always the case, but I think it often is. As a nurse working in a nursing home, it was not uncommon to come into a room and find someone delivering a soliloquy to nobody; some people did this all day long. What made these stories seem meaningless was not just their disjointed nature and lack of referentiality, but the fact that there was nobody listening, nobody to respond or to take these stories seriously. Stephen was bedridden and so spent most of the time in his ro o m alone talking to the walls. He talked all day long and sometimes into the night. And yet, if we entered his room, he would raise his voice and continue quite loudly, looking at us, and directing his storying at us until we left. He seemed to be talking to some imagined person who he would associate with anyone who came near. If I responded, he would answer me from the context of whatever story he was telling. Often, although we mostly spoke at cross purposes, he and I were able to relate to each other quite well. Mostly, however, in the rush, the other nurse and I would simply attend to him, ignore his raised voice and leave the room without speaking to him. But, unlike Henry, he would often call out, ‘Come back, come back!’ Another bedridden patient with Alzheimer’s Disease, Betty, would often grasp my hand as I was repositioning her, and say things like, ‘Oh, sweetie, won’t you stay and have a drink? Ern and I have had the most wonderful d a y. He’s just popped out for a bottle of wine but he

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won’t be long.’ She would cling to my hand with both of hers, not wanting to let go of the company but, inevitably, I would have to prise her fingers from mine and get on with my work. Of course, Betty hadn’t really had a day out with her deceased husband Ern, but she imagined that she had and she wanted to tell someone about it. Or, maybe, she just wanted to tell someone — anyone — something. Still another patient, Elsie, was so desperate to be heard that she continually clambered out of bed, fell, and rang the bell for some attention. When we answered her call, she would begin to talk rapidly, wanting us to stay. Often she would ring the bell several times in the one evening which, obviously, did not endear her to the nursing staff and did not get her the listening attention she craved. Then there was Jane who used to wander down the hallway after ‘lights out’ and, shivering in her nightie, interrupt our writing of reports with tidbits of conversation. ‘You’ll never believe what’s just happened!’ she’d say. But Jane was never allowed to continue for long and was always put back to bed promptly. The kind of isolation that people with Alzheimer ’ s Disease feel is exacerbated by the fact that there is either no longer anyone there to listen (family and friends), or else those who are there (the nurses) are too busy, don’t have time, don’t care or don’t understand. It’s not so much the understanding that is important here, however. If it is realised that people with Alzheimer’s Disease are not necessarily, or not always, trying to convey a message, or wanting, in return, a cognitive response, then it follows that their storying might be less an attempt to convey

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information than to connect with people. Their storying draws attention to the fact that all storying expresses this fundamental human need to relate some t h i n g t o somebody. The reason this is so much more obvious in the storying by people with Alzheimer’s Disease is that, often, their storying is disconnected from the situational context to such an extent that it doesn’t make cognitive sense to whoever is listening. If ‘read’ in terms of its cognitive meaning, this storying is easy to reject as nonsense, not because, as Feil’s work so convincingly argues, it is nonsense but because it is listened to in a particular way, with particular expectations. (And, I would add, these expectations are harsher and more demanding when the teller has Alzheimer’s Disease.) But there is another way of ‘reading’ the storying by people with Alzheimer’s Disease: these stories can be read not only for their re f e rence (generally lost and unshared) to a past history and a present psycho-physical state, but also as an expression of the basic human desire to connect, to relate, with people. As Feil’s work demonstrates, a listening rather than a dismissive a p p roach to the storying by people with Alzheimer ’ s Disease has the potential to enable relationships between patients and carers which are not possible otherwise, and which are productive. In other words, to simply listen and respond to the storying by people with Alzheimer ’ s Disease would ameliorate the distress of patients and, possibly, ease the tasks of nurses who, in my experience, expended a lot of energy attempting to shut people with Alzheimer’s Disease up. Evelyn and Susan’s collaborative

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storying illustrates how, when people with Alzheimer’s Disease are listened and responded to, relationships can still flourish, despite cognitive difficulties which may be experienced by both tellers and listeners, because one of the most important aspects of the everyday act of storying is that it is a shared activity that generates human relationships. As Chambers puts it, ‘The significance of the story is determined less by its actual content than by the point of its being told, that is, the r e l a t i o n s h i p s mediated by the act of narration.’2 This is what he calls the ‘performative function’ of storying and he points out that ‘the social fact that narrative mediates human relationships and derives its “meaning” from them’ is something which is often not seen, not understood, by the social, linguistic and narrative theorists.3 In everyday life the importance of storying as a vehicle w h e reby people are able to re l a t e (Chambers draws attention to the double meaning of this term) is taken for granted. In the thinking and writing of this book I discovered that storying is something we do all the time, in all sorts of contexts and circumstances, without realising that we are doing it, and, more importantly, without realising those contexts, those circ u m s t a n c e s . Storying is part — often the whole — of every conversation, every lecture, news item, visit to the doctor, song, phone call, memory and dream. But, even more, the act of storying is part of every relationship. It follows, then, that everyday storying is always a collaborative activity, an exchange between people. For Chambers that exchange is the whole ‘point’ of storying.4 The Joe Story

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dramatically exemplifies this idea. Chambers’ ‘point’ is important because it explains why stories told by people with Alzheimer’s Disease are so often ignored or dismissed as nonsense. Relationships don’t usually happen when people with Alzheimer ’ s Disease story. They don’t happen because most people either don’t listen to them at all, or, if they do, they listen with a particular attitude to the storyteller which cancels out potential meaning, cancels out potential relationship. A communally produced feeling, or attitude, exists amongst most people who don’t have Alzheimer ’ s Disease which, ultimately, discredits anything people with Alzheimer’s Disease have to say. There is, though, another, smaller, community which does recognise these stories as stories which are valuable, which have importance, which mean something (Feil and Crisp, for example, could be said to belong to that community). So there are at least two kinds of ‘reading’ communities — a normative and a counter-normative community. When it comes to the storying by people with Alzheimer’s Disease, which are the ‘communities’ that interpret their storying as meaningless? I think, firstly, it is the people who work in institutions like medical schools, hospitals and nursing homes, and, secondly, it is society at large which agrees with (by not questioning) these medicalised ‘interpretations’. So, despite the fact that we all need to tell our stories, and to have them heard and taken seriously, both the telling and the listening are subject to interpretations which are constructed, governed and, there f o re, owned by majority communities, n o t

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minority communities made up of scattered individuals. People with Alzheimer’s Disease often story into the void of a community response which is not a response at all but a dismissal. It is because this dismissal is communally felt and thought that it is so influential, so pervasive and so (seemingly) certain. The medical community and, s u b s e q u e n t l y, the general community, thinks that it ‘knows’ the storying by people with Alzheimer’s Disease is nonsense. This ‘knowledge’ is coded, governed knowledge. It is a ‘knowledge’ only of what is scientifically, and communally, cognitively, knowable — what is explainable, definable. The stories told by people with Alzheimer’s Disease cannot be ‘known’ when responses to these stories are always already halted by these kinds of responses which are really non-responses. It may seem that I am saying that the stories told by people with Alzheimer’s Disease have no cognitive or logical meaning. I am not saying that at all — I am saying that this is how these stories are usually received — or, rather, not received. Meaning is surely a mixture of both the cognitive and the emotional — and the Joe Story demonstrates this beautifully. The trouble is that even the name or the label or the brand ‘Alzheimer’s Disease’ has become associated with the nonsensical. It is this presupposition which prevents people from listening to the storying by people with Alzheimer’s Disease with open minds, open hearts. My point is this: in order to get to the cognitive meanings of these stories — no matter how disconnected from the here-and-now situations in which they are told — an emotional connection is necessary, an empathy.

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Feil’s work, Crisp’s work, the Joe Story and Evelyn and Susan’s weekly storying is evidence that the storying by people with Alzheimer’s Disease is generated by emotional — though not usually communal — responses which have the potential to transform other, more usual, ways of ‘reading’ these stories. It can be seen that the everyday act of storying is governed, coded and subject to pact-like communal interpretations. The overall result of this is that stories are made to mean — or not to mean — in a restricted way. But this restrictedness is sometimes subverted by story situations which are, somehow, different. Chambers talks a lot about ‘narrative seduction’ 5 and we all know what it feels like to be seduced by a story or even a phrase of a story. I was seduced by the Joe Story and I’m still not sure whether it was Joe or his story which enticed my interest. It doesn’t really matter because Joe, his stories, his storying — and my response, and I — were, have been, and are, all mixed up together. The Joe Story was a collaborative performance. The ‘world’, or the situation, which Joe and I entered into and created out of our daily exchanges had very real consequences. He became a happier person (he even said things like, ‘Oh, Julie, I’m so happy!’) and my attitude to people with Alzheimer’s Disease was transformed. This might be what Chambers means when he talks about how the context of any story is important in that this very context is changed in the act of telling. Storying, he says, is not merely a way of talking about our experiences, but is an experience in itself. Chambers’ argument, in which he

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uses the term ‘context’ repeatedly, points to a need to reread, or relisten, to everyday stories with an awareness of how their various contexts function in such a way as to generate and produce meanings which are continually changing, being modified and performing a generative function of their own. As Joe and I storied together, our relationship changed as we grew to know and understand each other. My attitude towards him changed in that I no longer regarded him as a patient (and a difficult one at that) but as a friend. And Joe changed too, in that he became more contented, more light-hearted and less prone to tears and rages than he had been before. This was due to the emotional and experiential material, his and mine, which we brought to each exchange but, more i m p o r t a n t l y, it was also due to the ongoing story p e r f o r m a n c e itself. So my storying with Joe, and the collaboration this entailed, could be seen to serve the ‘performative function’ which Chambers describes. 6 To see storying as a performative act is to see meaning as something which is produced in and through the processes of telling, listening and responding, and not as something which resides within the story itself. Even more, it is to see that (narrative) meaning is experienced, not just reflected, expressed, realised or constru c t e d : meaning is something which is absorbed into bodies/selves, which transform, and can be transformed by, such meaning in the very act of storying. The story of my ‘engagement’ to Joe wasn’t a true story in the ordinary sense. But it was a ‘real’ story in that its enactment transformed a nurse/patient relationship into

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a friendship. When Chambers talks about the power of storytelling to change human situations, he draws attention to a very important aspect of the story process. If, through the act of storying, we are able to change situations, then it can be seen that storying is a way of accessing power. (I don’t mean ‘power’ in the usual sense of force coming from the top, but in its subtler, everyday sense.) Crisp discusses how her mother’s confabulations empowered her with a ‘doubled agency … as teller and as major figure within the tale.’7 This is exactly the sort of thing which happened when Joe began to story. My relationship with him was only a small part of what became a chain-reaction event. Every day another performance of the story ensued, with different tellers and different audiences, and with Joe as the ‘star’. The act of storying provided him with a way of negotiating and improving the treatment he received in the nursing home. It provided him with new friendships. It was, to recall de Certeau’s term, ‘tactical’. And, because Joe’s storying was so interesting and entertaining, he was able to give, and receive, a lot of pleasure. For Joe, then, the act of storying was empowering. Ted Cohen talks about how stories, given and received, are often expressions of ‘feeling’.8 This is why stories are often so difficult to interpret intellectually, but can be understood at an emotional or kinesthetic level. Poetry is a wonderful example of how, sometimes, meaning can be received as something felt rather than as something immediately understood. It is often due to the use of

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metaphor that a poem or a story moves us in a way which we can’t describe. Still, no matter how much we are moved emotionally, inexplicably, we do, mostly, reach some sort of intellectual understanding of what has moved us — we do eventually explain to ourselves the metaphors and images which have made us feel. Cohen does not address the intellectual reception of texts; indeed, he rests his case with the argument that ‘received’ meaning is wholly emotional. Still, his approach does remind me that the initial and/or presiding response to a story is often emotional and that feeling-understandings are legitimate ways of understanding and assimilating stories. If metaphor can be defined as the expression of one thing in terms of another (and my earlier discussion of the ‘abject’ illustrates this) then the Joe Story — as it happened, as it developed — can be seen as a complex metaphor in that his romance with Sarah all those years ago was retold through the story of his romance with me. My response to the story was also metaphorical in the sense that I ‘took up’ the story and contributed to it by storying my acceptance of Joe’s proposal of marriage through my own real-life experience of being proposed to by my now husband. (Unlike the Sarah material, though, my own experience was simultaneous to the unfolding of the Joe Story.) It could be said, then, that the Joe Story worked through a process of identification. The whole idea of identification can be usefully applied to the experience of collaborative storying. For Jacques Lacan, identification is a misrecognition in the sense that

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two different things, two different people, cannot be one and the same thing no matter how much one identifies with the other. 9 In general terms, identification is an empathy — a feeling for someone else which sometimes becomes a feeling like someone else. This empathy can be felt by a listener for a teller, by a teller for a listener, by a listener for a character and so on. For instance, during the Joe Story, I identified with Joe and with Sarah, and Joe identified with a previous Joe and with a present Joe. Also Joe seemed to me so much like Anthony (my then fiancé) just as I seemed to Joe so much like Sarah. The Joe Story indicates that the act of storying is, to one extent or a n o t h e r, an act of empathy, sometimes r e c i p ro c a l , sometimes fantastical, but always, somehow, f e l t. Empathy is not just a mushy way of saying, ‘Yes, I know how you feel.’ In the everyday act of storying, empathy happens when the teller and the listener (and, often, this also involves the character who may actually be the teller, as in autobiography and fiction), suddenly, inexplicably, metaphorically exchange places. This might happen for just an instant, like a magical flash. At the same time, of course, people don’t actually exchange places, so this metaphorical identification is a misrecognition; but it’s a purposeful, cognitive misrecognition in that powerful feelings are evoked when one person feels like another and feels as if they feel what that other person is feeling. Seeing someone cry and beginning to cry yourself, as if the sorrow is your own, is a good example of this kind of e m p a t h y. It’s the ‘as if’ part of this identifying, empathising process which makes it not simply an

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emotional response but a cognitive, a thoughtful, one. So even though empathy attempts the metaphorical leap of, for instance, my saying yes to Joe’s proposal as if I were Sarah and as if he were Anthony, it usually makes itself felt through an understanding — a cognition of how alike two situations are, not that they are the same situation. Joe, however, seemed to literally equate his romance with Sarah with his ‘romance’ with me. My own response to Joe was more complicated as I was not really in love with him and yet I was drawn easily into his story of courtship and marriage. The empathetic nature of my response meant that sometimes I felt a bit confused about the various identities in, and outside, the story — even my own identity. Everyday storying is marked by this kind of empathetic exchange — this confusion of identities — which may only be a split-second thing but, even so, is powerfully felt. Jones’ response to a story, in the epigraph to the previous chapter, is a poignant illustration of this phenomenon. Empathy, or identification, works through similarities and differences, and it is one of the things which always happens when stories are felt to ‘work’ for the listener. Nancy, who was in a sense both teller and listener in her story about her young nephew, identified with him to the extent that she felt like him in a peculiar sort of way. And in the Joe Story, I felt like Sarah and ninety-three-year-old Joe felt like young Joe. This is further complicated by the fact that both Joe and I, like Nancy, were both tellers and listeners in our collaborative storying. So, our response(s) to stories construct for us ‘meanings’ which are wrought

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by our identification with somebody other than ourselves. This identification seems magical because it is like a leap from reality into fiction but, as I’ve illustrated previously, it has very real repercussions. That I, the listener, seem to become the teller or the character by feeling like them, illustrates the metaphorical nature (via identification) of any story’s positive reception. To identify like this, then, is to make metaphorical meaning and, in every story situation which works, this happens both reciprocally and unpredictably. The Joe Story (and its repercussions and implications) was not predictable, was not foreseen. And yet, every time I have reiterated parts of this story to anyone who is interested, the ‘meaning(s)’ change according to how the various listeners identify with either me, or Joe, or Sarah, or people with Alzheimer’s Disease in general, nurses in general and so on. The act of storying is generated and made to mean by diff e re n t exchanges, different emotions, different empathies and, finally (but never finally of course), dif f e re n t l y constructed meanings, differently wrought interpersonal and collaborative performances. Obviously empathy doesn’t always happen. And, of course, it is possible to listen to a story and to some degree understand — construct — its meaning even when the teller and his or her characters are difficult to identify with. But stories work better, or are more effective, if some kind of identification or empathy happens. The implications of what Cohen asserts about the identification of a listener with a story’s character are important when the focus is on the stories told by people

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with Alzheimer’s Disease, because it privileges an emotional response. Or, another way of putting this is to say that Cohen prioritises the listener’s feeling response. He says that achieving such metaphorical identification is part of our humanity. ‘Human experience,’ he says, ‘requires of us that we be metaphor makers and story tellers,’ and that we be able to understand stories told to us by letting ourselves be metaphor makers. This was exactly the kind of thing that happened when I began to listen to Joe. I began to experience a kind of identity crisis which was due to a newfound empathy. At the time, this was not something I tried to do, it just seemed to happen because of the storying. I was even a bit embarrassed about what seemed not-done, weird, even magical. But this listener identification is something which Cohen implies we should actually cultivate because ‘thinking of oneself as another’ is an important part of being human. The everyday act of storying can be seen to be a cognitive a n d an emotional experience. These story experiences are a vital part of human existence and are contextualised by the human desire (the need) to interact and form relationships, and the need for meaning. It is important to realise that this everyday need to both tell and listen to stories, to share stories, is just as vital for people with Alzheimer’s Disease as it is for anyone. Their stories are generated by this need in exactly the same way that all stories are. The everyday act of storying can change human situations. The relationships which developed between myself and the people with Alzheimer’s Disease storied

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and discussed in this book would have been impossible if it hadn’t been for the collaborative process of storying. My new listening attitude transformed the kind of stories I had been hearing — but not listening to — for years, from nonsense into something meaningful. This meaningfulness was not so much in terms of content — it had more to do with the kind of exchange which the act of storying entailed. Nevertheless the content of the stories was also enhanced by the storying relationship. The reason I have referred to the Joe Story as ‘the Joe Story’ rather than ‘Joe’s story’, or ‘my story about Joe’, is because of its collaborative and performative nature. The Joe Story encompasses the various kinds of metaphorical exchanges already discussed, as well as accounting implicitly for the fact that it is not his story, or my story, but a blend of both. The Joe Story is also a way of describing an event, a situation, an experience of collaborative meaning making, and it illustrates the fact that all everyday stories are similarly constructed and c i rculated when they are listened to, responded to. U l t i m a t e l y, the Joe Story was a story which made a difference in the lives of those who participated in its production and in its performance. When other nurses teased Joe, or teased me, for instance, they entered into this performance. When storying is seen as a way of creating human relationships, stories told by people with Alzheimer ’s Disease begin to make more sense. When these stories are seen to be dysfunctional, the reasons are often to do with a lack of response and collaboration, a

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collaboration which is a necessary factor in all everyday story function. Of course a story’s content is important, and, of course the way a story is verbalised is important. But the collaboration which occurs in any story — which is often an unrecognised component of that story’s meaning — is just as important. Maybe more important.

‘Hey, Joe, your girlfriend’s here,’ the other nurse called out as we entered the dayroom to do the toilet round. All the patients looked up from their drowsing, or away from the television, to watch the Joe Story instead. ‘Hi Joe,’ I said, going over to him. He took my hand and looked up at me with his eyes shining. ‘I have something for you, my darling, over there.’ He pointed to a bunch of wilting roses that someone had put into a vase on one of the tables. ‘They’re wonderful, Joe,’ I said as we hoisted him up and onto the commode chair. ‘Thank you.’ He grinned at both of us and then whispered loudly to the other nurse, ‘Isn’t she beautiful.’ At that, all of us — Joe, me, the nurse, and the whole dayroom full of people — were overtaken by laughter.

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CODA

In this chain and continuum, I am but one link. The story is me, neither me nor mine. It does not really belong to me, and while I feel greatly responsible for it, I also enjoy the irresponsibility of the pleasure obtained through the process of transferring. Pleasure in the copy, pleasure in the reproduction. No repetition can ever be identical, but my story carries with it their stories, their history, and our story repeats itself endlessly. Trinh Minh-ha, Woman, Native, Other1

Joe’s storying was punctuated continually with silences and in these quiet moments I ‘read’ prodigiously what can only be described as prodigious in itself — an enormous, m o n s t rous gulf, or gap; a silent body with the most longing eyes I have ever seen; a self, an unreadable text; something, someone disturbing but, strangely, compelling. The silences gradually became more frequent. Joe was dying.

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I would chatter away, holding his hand, sitting on the side of his bed. He would look at me, then look away, then look at me again. His eyes, which had been so blank and uninterested when I first met him, and had then, for such a short time, become so twinkly and mischievous, now alternated again between blankness, bewilderment and obvious physical pain. Joe stopped speaking altogether. I cannot presume to know what he was thinking, what he was trying to say when he opened his mouth and nothing came out. But I did know the dreadful pressure of his hand a few hours before he died, the gro a n i n g sound in his chest, the whispered, barely audible nonwords, the rough, familiar feel of his cheek, and the tears which stood in his eyes in a proud kind of way, as I kissed him goodnight for the last time. We all speak our selves in a kind of discontinuous way and our storying is often shifty, often full of ‘gaps’, often unfinished. What we do say about ourselves is inextricably entwined with what we don’t say. The act of storying entails a constant movement between our speaking and our silent selves. Storying is something that we all do every day. It enables us, in many and varied ways, to negotiate the movements we make from context to context. It enables us to relate with and to the various people we meet in these different life contexts. It enables us to (re)create ourselves in ways which sometimes defy, or subvert, our given social positions. If it weren’t for the Joe Story, I would not have listened

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so seriously to the storying by all those other people with Alzheimer’s Disease. I would not have realised that the category of meaninglessness was an impossible category — that meaninglessness m e a n s exclusion, abjection, erasure; that meaninglessness means putting your fingers in your ears so you won’t hear what you don’t want to hear or what you don’t (want to) understand; that meaninglessness m e a n s rejecting even the trace of someone’s cry in the mist of their mysteriousness. And, if it weren’t for the Joe Story, I would not have listened as avidly as I did to my then four-year-old son’s beginning attempts to story. Stories about why, for instance, there is (all of a sudden, it seems) a full moon. ‘Prob’ly,’ he says, ‘Daddy fixed it.’ And I would not be listening so attentively to the stories told to me by my husband’s family about how, as a boy, he planted half an acre of Iceland poppies on the family farm just after his father died. And I would not be listening to my self, that ongoing story of who I am becoming. If it weren’t for the Joe Story, I would not be listening with such an open heart to everyday stories which I may never be able to fully understand but which, framed by my need for their meanings, I absorb and construct as meaningful, profound, significant, poetic. During the evening meal Mr Hughes remained patiently on the toilet because he was unable to get off. Gently he kept calling, hoping someone would hear him. Elizabeth Jolley, Mr Scobie’s Riddle2

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Endnotes

Introduction 1 2

Trinh Minh-ha, Woman, Native, Other, Indiana University Press, Bloomington, 1989, p. 2. Ian Reid, Narrative Exchanges, Routledge, London, 1992, p. 1.

Chapter 1 1 2 3 4 5 6 7 8 9 10 11 12 13 14

Elizabeth Jolley, The Orchard Thieves, Viking, Ringwood, 1995, p. 8. Aritha Van Herk, Places from Ellesmere, MeWest Press, Edmonton, 1991, p. 13. Oliver Sacks, The Man Who Mistook his Wife for a Hat, Picador, London, 1985, p. 136. Michel de Certeau, The Practice of Everyday Life, University of California Press, Berkeley, 1988, p. 108. Jane Crisp, ‘Making Sense of the Stories People with Alzheimer’s Tell: A Journey with my Mother’, Nursing Inquiry, 2.3, 1995, p. 133. Julian Barnes, A History of the World in 10 Chapters, Picador, London, 1990, p. 242. Judith Davis, Older Australians, W B Saunders, Sydney, 1994, p. 111. Michel Foucault, Discipline and Punish, trans. Alan Sheridan, Allen Lane, London, 1977, p. 205. See Michel Foucault’s Discipline and Punish. Foucault, Discipline and Punish, pp. 137, 169, 209. See the work of S Risse and R Barnes, pp. 368–76; Victoria Cotrell & Richard Shulz, p. 207; Sherman; Helms; Butler, Burgio & Engel (see bibliography). Foucault, Discipline and Punish, p. 204. Judith Davis,p. 112. Foucault, Discipline and Punish, p. 148.

Chapter 2 1 2

Judith Davis, Older Australians, W B Saunders, Sydney, 1994, p. 102. For a more comprehensive description of Foucault’s notion of discourse, see Michel Foucault, The Archaeology of Knowledge, trans. 206 ~

3 4 5 6 7 8 9 10 11

12 13 14 15 16 17 18 19

20 21

A M Sheridan Smith, Pantheon, New York, 1971. Julian Appell, Andrew Kertesz & Michael Fisman, ‘A Study of Language Functioning in Alzheimer’s Patients’, Brain and Language, 17, 1982, pp. 73–91. Daniel B Hier, Karen Hagenlocker & Andrea Gellin Shindler, ‘Language Disintegration in Dementia: Effects of Etiology and Severity’, Brain and Language, 25, 1985, pp. 130–132. Victoria Cotrell and Richard Schulz, ‘The Perspective of the Patient with Alzheimer’s Disease: A Neglected Dimension of Dementia Research’, The Gerontologist, 33.2, 1993, p. 207. Kathryn Montgomery Hunter, Doctor’s Stories: The Narrative Structure of Medical Knowledge, Princeton University Press, New Jersey, 1991, p. 61. Jaber F Gubrium & Brandon Wallace, ‘Who Theorizes Age’, Ageing and Society, 10, 1990, pp. 137–140. Mark H Beers & Robert Berkow, eds, The Merck Manual of Diagnosis and Therapy, Seventeenth Edition, Whitehouse Station, New Jersey, Merck Research Laboratories, 1999. John Wiltshire, ‘The Patient Writes Back’, Hysteric, 1, 1995, p. 40. ibid., p. 49. G S Rousseau, ‘The Discourses of Literature and Medicine: Theory and Practice’, Enlightenment Borders: Pre- and Post-Modern Discourses, Medical, Scientific, Manchester University Press, Manchester, 1991, p. 14. Wiltshire, p. 51. ibid. Gerry Naughtin & Terry Laidler, When I Grow Too Old to Dream, Collins Dove, North Blackburn, 1991. Jaber Gubrium, ‘Incommunicables and Poetic Documentation in the Alzheimer’s Disease Experience’, Semiotica, 72, 3/4, 1988, pp. 235–53. ibid. Robin Philipp, unpublished paper presented at the Health in the Writer’s Hand Conference in Wellington, New Zealand, 1996. Naomi Feil, The Validation Breakthrough, MacLenan and Petty, Sydney, 1993. J Grimley-Evans, ‘How are the Elderly Different?’ Improving the Health of Older People: A World View , eds. Robert L Kane, J Grimley-Evans & David Mcfadyen, Oxford University Press, Oxford, 1990, p. 64. T Wetle, ‘Age as a Risk Factor for Inadequate Treatment’, Journal of the American Medical Association, 258, 1987, p. 516. Lynne Marzinski, ‘The Tragedy of Dementia: Clinically Assessing Pain in the Confused, Nonverbal Elderly’, Journal of Gerontological Nursing, 17.6, 1991, p. 26.

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22 ibid. 23 N Wachter-Shikora & S Perez, ‘Unmasking Pain’, G e r i a t r i c Nursing, 4, 1982, pp. 392–93. 24 quoted in Marzinski p. 26. 25 Mari Anne Bartol, ‘Nonverbal Communication in Patients with Alzheimer’s Disease’, Journal of Gerontological Nursing , 5.4, 1979, pp. 21–31. 26 Michel Foucault, Discipline and Punish, trans. Alan Sheridan, Allen Lane, London, 1977, p. 184. 27 ibid., p. 199. 28 Foucault, Mental Illness and Psychology, trans. Alan Sheridan, Harper & Row, London, 1976, pp. 90–91. 29 Foucault, The History of Sexuality, trans. Robert Hurley, Vintage, New York, 1990, p. 101. 30 Michel de Certeau, The Practice of Everyday Life, University of California Press, Berkeley, 1988, p. 93. 31 ibid., pp. xii–xiii. 32 ibid., p. xiii. 33 ibid., p. xiv. 34 ibid., pp. 36–37. 35 ibid., pp. 35–37. 36 Jane Crisp, ‘Empty Ramblings or Empowering Narratives? The Discourse of the Alzheimer’s Sufferer’, Meridian, 2.2, 1992, p. 135. Chapter 3 1

Susan Sontag, Illness as Metaphor and AIDS and its Metaphors, Doubleday, Sydney, 1990, pp. 3–4. 2 See Julia Kristeva, Desire in Language, Blackwell, Oxford, 1980 and Powers of Horror, trans. Leon S Roudiez, Columbia University Press, New York, 1982. 3 Kristeva, Powers of Horror, pp. 1–8. 4 ibid., pp. 70–71. 5 Judith Butler, Bodies That Matter, Routledge, New York, 1993, p. 243. 6 Sontag, p. 3. 7 Tony Broe, ‘Research in Alzheimer’s Disease: The Public Health Challenge of the 21st Century’, Dementia: A Positive View , Commonwealth Department of Veterans’ Affairs, Canberra, 1994, pp. 22–26. 8 Sontag, pp. 60–61. 9 ibid., p. 21. 10 R Cook, The Year of the Intern, Harcourt Brace Jovanovich, New York, 1972, pp. 191–92.

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Chapter 4 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

Jorge Luis Borges, The Adelph and Other Stories: 1933–1969, trans. N Di Giovanni, Bantam Books, New York, 1971, p. 80. Abdul R. JanMohamed & David Lloyd, ‘Introduction’, Cultural Critique, 6, 1987, pp. 8–9. Oliver Sacks, The Man Who Mistook His Wife for a Hat, Picador, London, 1985, p. 106. Jana Sawicki, ‘Identity Politics and Sexual Freedom’, Feminism and F o u c a u l t, eds Irene Diamond & Lee Quinby, Northeastern University Press, Boston, 1988, p. 184. Trinh Minh-ha, Woman, Native, Other , Indiana University Press, Bloomington, 1989, p. 104. Gilles Deleuze, Pourparlers, Minuet, Paris, 1990, p. 152. Jane Crisp, ‘Empty Ramblings or Empowering Narratives? The Discourse of the Alzheimer’s Sufferer’, Meridian, 2.2, 1992, pp. 48–49. ibid. ibid. Dick Hebdige, ‘Some Sons and Their Fathers: An Essay with Photographs’, Ten–8, 17, 1985, p. 34. Barbara K Haight & Irene Burnside, ‘Reminiscences and Life Review: Explaining the Differences’, Archives of Psychiatric Nursing, 7.2, 1993, p. 91. ibid. ibid., p. 94. Minh-ha, p. 39. ibid., p. 36. Helène Cixous, ‘The Laugh of the Medusa’, New French Feminisms, eds E Marks & I de Courtrivon, Harvester Press, Brighton, 1981, p. 880. ibid., p. 886. Julia Kristeva, Desire in Language, Blackwell, Oxford, 1980, p. 136.

Chapter 5 1 2 3 4 5

Gail Jones, ‘Notes by Gail Jones’, Reading from the Left, ed Wendy Jenkins, Fremantle Arts Centre Press, Fremantle, 1994, p. 102. Rick Rylance, Roland Barthes, Harvester Wheatsheaf, New York, 1994, p. 89. See George Landow, Hypertext: The Convergence of Contemporary Critical Theory and Technology, John Hopkins University Press, London, 1992. Julia Kristeva, Desire in Language, Blackwell, Oxford, 1980, p. 36. Harold Bloom, The Anxiety of Influence: A Theory of Poetry, Oxford University Press, Oxford, 1973, pp. 94–95. ~ 209

6 7 8 9 10 11 12 13 14 15 16 17 18

Patsy Cohen & Margaret Somerville, Ingelba and the Five Black Matriarchs, Allen and Unwin, Sydney, 1990, p. 79. Jane Crisp, ‘Empty Ramblings or Empowering Narratives? The Discourse of the Alzheimer’s Sufferer’, Meridian, 2.2, 1992, p. 48. quoted in Trinh Minh-ha, Woman, Native, Other , Indiana University Press, Bloomington, 1989, p. 142. Drusilla Modjeska, Poppy, McPhee Gribble, Ringwood, 1990, p. 40. Trinh Minh-ha, Woman, Native, Other, Indiana University Press, Bloomington, 1989, p. 2. Gunther Kress, Communication and Culture, NSW University Press, Sydney, 1988, p. 104. Ross Chambers, Story and Situation: Narrative Seduction and the Power of Fiction, Manchester University Press, Manchester, 1984, p. 3. ibid. Naomi Feil, The Validation Breakthrough, MacLenan and Petty, Sydney, 1993, p. xi. ibid., p. 28–29. ibid., p. 33. ibid., p. 29. ibid., pp. xxv–xxvi.

Chapter 6 1 2

Christina Stead, Ocean of Story, Viking, Ringwood, 1985, p. 3. Elizabeth Jolley, Cabin Fever, Penguin, Ringwood, 1990; M y Father’s Moon, Penguin, Ringwood, 1991; The George’s Wife, Penguin, Ringwood, 1993. 3 Roland Barthes, The Pleasure of the Text, trans. Richard Miller, Hill and Wang, New York, 1975, p. 36. 4 Barthes, Image, Music, Text, trans. Steven Heath, Fontana, London, 1977, p. 160. 5 David Thelen, ‘Introduction: Memory and American History’, Memory and American History , ed. David Thelen, Indiana University Press, 1990, p. xvi. 6 Paula Hamilton, ‘The Knife Edge: Debates about Memory and History’, Memory and History, eds Kate Darian-Smith & Paula Hamilton, Oxford University Press, Melbourne, 1994, pp. 14–15. 7 Jack Goody, ‘Oral Culture’, Folklore, Cultural, and Popular Entertainments, ed. Richard Bauman, Oxford University Press, New York, 1992, p. 19. 8 Salman Rushdie, ‘Midnight’s Children and Shame’, Kunapipi, 1.1, 1985, pp. 7–8. 9 Ruth Finnegan, ‘Oral Poetry’, Folklore, Cultural Performances, and Popular Entertainments, p. 96. 10 Hamilton, pp. 14–15.

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11 Michel de Certeau, The Practice of Everyday Life, University of California Press, Berkeley, 1988, p. 200. 12 Personal Narratives Group, eds, Interpreting Women’s Lives, Indiana University Press, Bloomington, 1989, p. 261. 13 Donald Spence, Narrative Truth and Historical Truth, Norton, New York, 1982, p. 59. 14 Sigmund Freud, The Standard Edition of the Complete Psychological Works, Vol. 1, trans. James Strachey, Hogarth Press, London, 1953, p. 507. 15 Kaja Silverman, The Subject of Semiotics, Oxford University Press, New York, 1983, p. 63. 16 ibid., p. 64. 17 Trevor Lummis, ‘Oral History’, Folklore, Cultural Performances, and Popular Entertainments, p. 96. 18 Julian Barnes, The History of the World in 10 Chapters, Picador, London, 1990, p. 242. 19 Spence, pp. 92–93. 20 Ursula Le Guin, Dancing at the Edge of the World: Thoughts of Words, Women, Places, Grove Press, New York, 1989, p. 44. Chapter 7 1 2 3 4 5 6 7 8 9

Carolyn Steedman, Past Tenses, Rivers Oram Press, London, 1992, p. 171. Ross Chambers, Story and Situation: Narrative Seduction and the Power of Fiction, Manchester University Press, Manchester, 1984, p. 3. ibid., p. 4. ibid., pp. 3–10. ibid., pp. 208–22. ibid., p. 4. Jane Crisp, ‘Empty Ramblings or Empowering Narratives? The Discourse of the Alzheimer’s Sufferer’, Meridian, 2.2, 1992, p. 51. Ted Cohen, unpublished paper ‘Metaphor and feeling’ presented at the Narrative and Metaphor Across the Disciplines Conference in Auckland, New Zealand, 1996. See Jacques Lacan, ‘The Mirror Stage as Formative of the Function of the I as Revealed in Psychoanalytic Experience’, Ecrits: A Selection, trans. Alan Sheridan, Norton, New York, 1977.

Coda 1 2

Trinh Minh-ha, Woman, Native, Other , Indiana University Press, Bloomington, 1989, p. 122. Elizabeth Jolley, Mr Scobie’s Riddle, Penguin, Ringwood, 1983, p. 29. ~ 211

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Hebdige, Dick. ‘Some Sons and their Fathers: An Essay with Photographs.’ Ten–8. 17, 1985. Helms, P. ‘Efficacy of Antipsychotics in the Treatment of Behavioural Complications of Dementia.’ Journal of the American Geriatrics Society 33 (1985): 206–09. Hier, Daniel B., Karen Hagenlocker, and Andrea Gellin Shindler. ‘Language Disintegration in Dementia: Effects of Etiology and Severity.’ Brain and Language 25 (1985): 117–33. Hunter, Kathryn Montgomery. Doctor’s Stories: The Narrative Structure of Medical Knowledge. New Jersey: Princeton University Press, 1991. JanMohamed, Abdul R and David Lloyd. ‘Introduction.’ Cultural Critique 6 (1987): 8–9. Jenkins, Wendy, ed. Reading From the Left. Fremantle: Fremantle Arts Centre Press, 1994. Jolley, Elizabeth. Mr Scobie’s Riddle. Ringwood, Vic.: Penguin, 1983. —–. Cabin Fever. Ringwood, Vic.: Penguin, 1990. —–. My Father’s Moon. Ringwood, Vic.: Penguin, 1991. —–. The George’s Wife. Ringwood: Penguin, 1993. —–. The Orchard Thieves. Ringwood: Viking/Penguin, 1995. Jones, Gail. ‘Notes by Gail Jones.’ Jenkins 102–03. Kress, Gunther, ed. Communication and Culture. Sydney: NSW University Press, 1988. Kristeva, Julia. Desire in Language. Oxford: Blackwell, 1980. —–. Powers of Horror. Trans. Leon S Roudiez. New York: Columbia University Press, 1982. Lacan, Jacques. ‘The Mirror Stage as Formative of the Function of the I as Revealed in Psychoanalytic Experience.’ Ecrits: A Selection. Trans. Alan Sheridan. New York: Norton, 1977. Landow, George P. Hypertext: The Convergence of Contemporary Critical Theory and Technology. London: John Hopkins University Press, 1992. Le Guin, Ursula. Dancing at the Edge of the World: Thoughts on Words, Women, Places. New York: Grove Press, 1989. Lummis, Trevor. ‘Oral History.’ Folklore, Cultural Performances, and Popular Entertainments. Ed. Richard Bauman. New York: Oxford University Press, 1992. Marzinski, Lynne. ‘The Tragedy of Dementia: Clinically Assessing Pain in the Confused, Nonverbal Elderly.’ Journal of Gerontological Nursing 17.6 (1991): 25–28. Minh-ha, Trinh. Woman, Native, Other. Bloomington: Indiana University Press, 1989. Modjeska, Drusilla. Poppy. Ringwood: McPhee Gribble, 1990. Naughtin, Gerry and Terry Laidler. When I Grow Too Old to Dream. North Blackburn: Collins Dove, 1991.

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Acknowledgements

I would like to thank Barbara Milech and Anne Brewster from the School of Communication and Cultural Studies at Curtin University of Technology for their invaluable assistance during the writing of the PhD version of this book; Wendy Jenkins at Fremantle Arts Centre Press for her editorial advice throughout the rewrite; Thomas Shapcott for permission to use his poem ‘The Elegy Fires’ and Elizabeth Jolley for Mr Scobie’s Riddle; but especially Anthony who gave me the space to write.

216 ~