Whose Reality is it Anyway?

The following is an extract from 'PSYCHIATRIC NURSING: Ethical Strife',

edited by Phil Barker and Ben Davidson,
published by Arnold, London.

This webpage has had visitors since June 22nd 1996.

Introduction

This chapter is based on my experiences working as a nurse in a new mental health unit in London from 1984 - 87. I had recently left university with a degree in psychology and no particular career plan, and the job seemed like a good start to something, of what I was unsure. While I had dismissed most of my degree course with the utmost contempt I had always been somewhat drawn to the area of mental illness. I was twenty-two years old and had, as yet, made no connection between my attraction to madness and my own internal confusions.

I arrived at the hospital with a lot of enthusiasm and a head full of academic theory, excited by the prospect of my first encounter with real-life insanity. So I was rather disappointed to find not a single sign of madness in the huge, sparkling new building with its spotless expanses of beige carpet and pristine furniture. But there were plenty of professionals there with a lot to say about what was going to be our radical new approach to mental health, and we spent quite a few weeks discussing key issues and getting used to working as a multi- disciplinary team.

Where are all the old people?

The unit was divided into two sections called 'acute' and 'elderly', situated on opposite sides of the building. The two sides were like parallel worlds. On the ground floor the elderly day hospital was sited below two elderly wards and, on the other side, the acute day hospital was sited beneath two acute wards. The two halves of the unit had separate facilities and different staff, so there were in fact to be two multi-disciplinary teams working with two sets of patients who would have no contact with each other. At the time I never thought to question this separation which now seems to me so pertinent to the ethical dilemmas I later encountered. It is interesting that the sole criteria for placing patients was age and, with hindsight I would suggest that this separation served to reflect and reinforce the alienation of old people in our society. Another interesting point is that the younger section was named 'acute'. The definition of 'acute' is critical, serious, coming to a crisis, thereby implying that the 'elderly' patients were somehow not so serious, nor experiencing crises. Moreover, because the opposite meaning of the word 'acute' is 'chronic', the implication was that the elderly were somehow not going to change, were not able to be helped, were indeed 'no-hopers'. So both the physical separation and the linguistic definitions provided a good basis for the negative attitudes which were apparent from the start.

Attitude

Such negative attitudes fed my own reluctance. When the Senior Nurse allocated me a position in the elderly day hospital my heart sank. I had bad memories of living with my grandfather's progressive senility and besides, how was I going to practise my newly-learned Rogerian client-centred therapy with some old fossil who thought that World War 1 had just started? My unspoken disappointment was in no way dissipated by the other nurses who joined me in the elderly day hospital. Interestingly enough most of them were black. They quickly explained to me that the rule in psychiatry was that white nurses did the glamorous jobs, the therapeutic chatting with the nice young neurotics, while the blacks cleared up the excrement. The memories of my grandfather's incontinence grew suddenly more vivid.

However, there were a few of my new colleagues who were obviously pleased with their new placements. Some told me clearly that they could not face the distressing confusions of the young , but were perfectly happy with the simple physical needs of the elderly mentally infirm. I liked listening to the stories that the other nurses told me. Before the unit officially opened we had plenty of time to sit around discussing our previous experiences and, because mine was entirely limited to the printed page, I was fascinated to hear experienced nurses talking about their work with real people, and over the first few weeks I learned a lot about what to expect. The two major themes which emerged were chaos and control. So I was prepared, so I thought, for the arrival of the patients.

The Chaos of Old Age

Three months on. Let me give you a typical scene from the brand new up-and-running elderly day hospital:

As you open the swing doors of the main entrance the first thing that hits you is the smell of disinfectant battling with the pervasive undertones of urine and faeces. The recently immaculate beige carpet is now badly stained and as you approach the large day room you can hear shouts, crying, and a low mumble of confusion. No one appears to notice your entrance. Several old people sit silently in wheelchairs, some distance from each other. One man crouches in a corner, wringing his hands and muttering to himself; another holds a radio to his ear, listening intently to the crackle between stations. An old lady with apricot hair methodically paces a circle around the television, barefoot and carrying a pair of pink, plastic sandals. From the bathroom you can hear the sound of intermittent screams. Shouts fly from the kitchen, and from the art room a high-pitched sobbing reaches a crescendo, just as a flustered nurse emerges from the bathroom wearing rubber gloves and a plastic apron covered in talcum powder. She has a deep scratch on her cheek which is dripping blood. Her first words to you are:

"Jimmy's just eaten the goldfish!"

Coping with Chaos

I think that one of the major practical problems in the caring professions is that there are never enough carers. Even before you start analysing the quality of care there is always the issue of quantity. I found myself busier than I had ever been in my life. In just a few weeks my working day had transformed from a series of cosy coffee-orientated planning meetings to a constant routine of cleaning, tidying, washing, toileting, feeding and medicating. Siting down for a chat with someone was a luxury, it was usually interrupted, and there was little time to think about what was said. And perhaps a part of me was relieved, in the beginning, not to have to listen to what I was being told. Because what I was being told was just too painful. It is pretty distressing to see a chaotic group of chronic no-hopers, but what is even more distressing is to realise that these people are actually a chaotic group of frightened individuals who are trying to deal with the major crises of old age.

It is not so hard to see why the emphasis was on keeping their bums clean. An enormous amount of time and energy went into cleaning up excreta, leading people to the toilet and changing endless wet and soiled clothes. There was a 'no nappies' policy, implemented supposedly to preserve the dignity of our patients, but serving only to make everyone obsessed by what was coming out of our patients' bottoms. We could deal with that end of things. Somehow, ironically, it was the other end that was more unpalatable. What came out of their mouths, and I'm not taking about the vomit, dribbling and ill-fitting dentures - we could deal with that too. It seemed to be the words that everyone was avoiding - the emotions.

Getting Involved

I was told right from the start that I should not get too involved. Another thing I was warned about was to avoid encouraging morbid thoughts. One-to-one work was rare, except in the area of personal care, and I had an instinctive feeling that it wasn't right to discuss emotions with someone when they had their knickers round their ankles. The emphasis of activity in the day hospital was on group work - cooking groups, art groups, craft groups and reality orientation (which I shall discuss in detail later in the chapter.) But the work I enjoyed most was listening to individual patients telling me about their lives. I can safely say that I got too involved. I spent a lot of time worrying about patients. I thought about patients long after I had finished work. I even dreamt about patients. It was the individual stories which made up the sum of my experience: each and every one seemed to throw a different perspective on my work but, limited by space, I shall focus on just three patients whom I believe are a good representation of the vast diversity I encountered.

Everyone is an Individual

Jimmy - Dementia

Jimmy was a seventy-two year old Irish man, tall and muscular with a grim expression. Looking at pictures of his brain scan the consultant psychiatrist marvelled at how Jimmy even managed to remain alive, let alone function as he did. The way Jimmy functioned was to pace very rapidly around the building all day long, thumping anyone who came near him and shouting, "Fuck off, you fucker!" He was a patient on one of the elderly wards. Some of the patients on the wards were considered able enough to attend day hospital activities with the elderly patients from the local community. Jimmy was not considered appropriate for the day hospital, but he came anyway. Nobody really knew how to stop him, straightjackets being out of fashion. I was scared stiff of him.

Elisabeth - Definitely Not Dementia

Elisabeth was a seventy-eight year old woman from the East End of London. She dressed immaculately in bright sequined clothes and wore a lot of gold jewelry. Polio in childhood had left her with a withered leg and she had always worn a caliper, but a recent stroke had confined her to a wheelchair. She had been referred to the day hospital following an overdose of sleeping pills. Elisabeth said very little during her first visits to the day hospital. She sat silently tense in her wheelchair, refusing to join groups and chain-smoking Benson and Hedges. She regarded the other patients with an expression of horror and disbelief. Very occasionally she would beckon me with a jerk of the head and whisper in my ear, "For God's sake get me out of this place!"

Millicent - Is it Dementia or isn't it?

Millicent was an eighty-four year old descendant of the aristocracy. She was a tiny, frail woman with fine dark curls framing her enormous blue eyes. She looked as though she might have been a heroine in the old silent films. Millicent was brought to the day hospital each day by her elder sister, Henrietta, and there was usually a tearful parting lasting up to an hour. From then on, and for the rest of the day, Millicent would sit curled into an armchair, watching the door for Henrietta's return. Whenever I approached her she would clasp my hand, gaze into my eyes and say the words that she repeated constantly, the words that had become a familiar background murmur in the day hospital, and the words that had been driving her sister to distraction for the past year:

"I don't know what to do and I don't know what to say and I don't know where to go.

"How do I stop this? I didn't want this to happen. I never thought this would happen. You must understand that I don't know what to do or what to say."

From the start I identified completely with Millicent. I didn't have a clue what to do or what to say either.

Reality Orientation

On one wall of the day room was a large white board on which information was written each day. For example:

TODAY IS MONDAY

IT IS 31st OCTOBER

THE YEAR IS 1986

THE WEATHER IS WET AND COLD

THE NEXT MEAL IS LUNCH

I had always had a problem remembering the date, so this was a godsend when it came to writing reports.

First thing in the morning the patients were sat around in a circle for a reality orientation group. Led by an occupational therapist they were given certain information and encouraged to participate in simple discussion. It went something like this:

O.T: "Good morning, everyone!"

(a few mumbled hellos)

O.T: "Isn't it an awful day? Look outside" (points to the window and rubs her hands together) "Brrr it's cold isn't it?"

Millicent: "How can I stop this? I didn't want this to happen."

O.T: (ignores her) "Who can tell me what day it is today?"

Millicent: "I don't know what to say."

O.T: "Look at the board, Millicent, and then you'll be able to tell us what day it is."

(Millicent stares at the O.T.)

Millicent: "You don't understand. Please understand that I don't know what to say."

O.T. (sighs) "Elisabeth - can you tell us what day it is today?"

(Elisabeth ignores her and stares out of the window. At this point Jimmy comes running in wearing only his pyjama jacket. He stares around the group.)

O.T. "Good morning, Jimmy. I was just asking everyone what day it is today - can you tell us?"

Jimmy: "Fuck off, you fucker!" (runs out)

O.T. (brightly) "As I was saying - Elisabeth!"

(Elisabeth sighs and looks at her.)

Elisabeth: "What?"

O.T: "I'd like you to tell us what day it is."

(Elisabeth raises her eyes to the ceiling)

Elisabeth: "Oh for God's sake it's Monday the 31st of October."

O.T: "Well done, Elisabeth! Now, can anyone tell me what's special about today?"

(Silence)

O.T: "Elisabeth - I'm sure you can tell us."

Elisabeth: (staring at her with disdain and speaking very slowly and precisely) " It's Halloween - and if you try to get me making pumpkin lanterns I'll stick one up your bloody arse."

I was frequently required to join in with these reality orientation groups, mainly to encourage participation and to stop people wandering off, and from the start I felt uncomfortable with the situation. The patients reacted to the reality orientation groups in a variety of different ways. Elisabeth was clearly insulted by being asked to state the obvious. Jimmy was obviously not interested in the information and not at all happy with the method of communication. Millicent wanted to talk about something else. What was clear was that for all of them, and for the other patients as well, the information being discussed was irrelevant. It was true that most of them did not know what day it was, but what was more important was the fact that each and every one of them did not care what day it was.

This is not to say that reality orientation does not have a place in the nursing of the elderly. But as Ian Morton and Christine Bleathman (1988) have pointed out, a blanket application of reality orientation is not only futile but can be damaging. I witnessed many times these groups develop into grotesque power games where patients were constantly reminded of their inadequacies by focusing on their inability to remember, followed by coercion into repeating facts and figures which bore no relevance to their present predicament. Also I was uneasy with the staff's apparent satisfaction at the end of a "good group", where the patients had successfully repeated the information like parrots. Everyone now knows it's Monday. So what?

From the start this approach disempowers the patient by setting the agenda of what is important. It is the staff who choose what to talk about, not the patients. I believe that reality orientation has become popular mainly because it gives the staff a sense of effective working when confronted with the frustrating intellectual deterioration of the elderly. It is a good way of imposing structure on chaos. It makes us feel better. But where reality orientation becomes abusive is when it negates what the patient is actually telling us. There is an assumption that the confused elderly talk "rubbish" and therefore they should be helped to talk "sensibly". I would argue, however, that there is always an underlying meaning in the nonsense of old age. This is hardly a new idea. Shakespeare's King Lear (1989) is a fine example of the breakdown of reason in old age, whereby a foolish king gains insight and moral redemption only by going mad. Anyone working with the confused elderly must have witnessed the patterns of Lear's own insanity - the incoherent chatter, the domination of a fixed idea, the strange attire, and the regression to a child-like state. But in Lear's nonsensical rantings are the seeds of truth and perception, and if we study the words of our patients as closely as the scholars study Shakespeare, we may find the beginnings to start making sense.

Making Sense

In America Naomi Feil (1982), disillusioned with reality orientation, developed an alternative therapy for the disorientated called "validation therapy" which focuses on the underlying meaning of speech and behaviour. So, instead of dismissing the nonsense we listen to the nonsense and try, together with the patient, to make sense of it. For example,

Millicent: "I don't know what to say or where to go or what to do."

Nurse: "You look very worried."

Millicent: "Yes, yes, I am worried - because I don't know what to do."

Nurse: "What to do about what?"

Millicent: "Everything! I don't know what to do about anything. I'm completely lost."

Nurse: "That sounds very frightening."

Millicent: (clutches Nurse's hand) "Oh it is! Yes, I'm terrified."

Working with Millicent was not easy. She irritated everyone with her constant repetitions and refusal to take part in any activities. The other nurses dismissed my attempts to talk to her as a time-wasting exercise ("Off to do a bit of psychology on Millicent - ha, ha) but I tried to spend just ten minutes on my own with her each day, listening to what she was saying and trying to help her make sense of the intolerable reality she had found herself in. These sessions were for a long time almost identical and I found myself becoming increasingly exasperated by this woman's ability to say the same sentence fifty times in one conversation. Nothing seemed to change except that the other nurses stopped laughing at me and became quite angry that I wasn't pulling my weight. I was very aware that I was in danger of becoming one of those "lazy nurses who sit around chatting." The occupational therapists felt that my time with Millicent should be spent on task-orientated activities, developing cooking skills etc. and participating in groups. And the clinical psychologist, while encouraging one-to-one sessions, advised me to take a more behavioural approach.

I did have many doubts about what I was doing but something kept me at it. I found myself repeating Millicent's words to myself, like a mantra, until they became meaningful to me, and I began to realise that the fears she expressed, of being lost and confused and unsure, were feelings that all of us must have at one time experienced, feelings that are often hidden after childhood and which none of us like to confront.

Millicent: "I don't know what to do."

Sally: "Sometimes I don't know what to do either."

Millicent: "Don't you? Don't you know what to do?"

Sally: "No, I'm feeling a bit helpless. I want to help you but I don't know quite what to do."

Millicent: "I don't know what to say. Do you know what to say?"

Sally: "Not always."

Millicent: "Isn't it awful? It's so frightening when you don't know what to say."

Sally: "Shall we try and find out what to say?"

Millicent: "Can we find out? I don't know. I don't know what to say. How do we find out?"

Sally: "We can try. We can help each other."

Millicent: "I'm scared."

Sally: "What's scary?"

Millicent: "I'm scared I'll say the wrong thing."

Sally: "What would happen if you said the wrong thing?"

Millicent: "You might go away."

The staff were not impressed by Millicent's progress. She still spent her entire time in the day hospital waiting for her sister to return, and saying the same things over and over again. But no one noticed that what she was saying was completely different. Now, what Millicent said was:

"If we just keep trying. If we just pull together. If we keep on trying we'll pull through. If we just keep holding on we'll pull through."

I saw this as a very positive step and I was pleased with myself, but at the case review it was unanimously decided that there had been no change in Millicent's condition. She still wasn't eating, she still refused to join in activities, and she still didn't know what day it was. The next step was ECT.

"So much for your psychotherapy," sneered a staff nurse.

I was firmly put in my place.

No Psychotherapy for the Elderly

Although a small number of people have acknowledged the benefits of psychotherapy, for example Hanna Segal (1980) it is widely believed to be of little significance for E.M.I. work. Freud believed that people over 50 did not possess the elasticity of mental processes to cope with treatment, and certainly this view is reflected in the allocation of the limited psychotherapy services to the elderly in the National Health Service. The word psychotherapy possesses a mystique which has limited it to a narrow field: for many people it still conjures up an image of a patient lying on a couch under the eye of a bearded man with a Viennese accent, and I find it disturbing that the nearest many mental health professionals have come to experiencing psychotherapy is watching a Woody Allen film.

During my period in the mental health unit, prompted by the dictum, "Physician heal thyself", I began to see a psychotherapist, and this proved to be invaluable in my work. I firmly believe that anyone working in this field should have the opportunity to experience being a 'patient' themselves. I found my own therapy essential in understanding the power-relations between the 'helper' and the 'helped', and in recognising transference and the importance of the relationship itself in the therapeutic process. I became increasingly interested in the importance of the past, an issue which was most relevant for many of the elderly patients I encountered who would talk of nothing else; and the increasing awareness of my own unconscious processes helped me to be aware of some of the unconscious processes underlying the behaviour and speech of my patients. I would also suggest that being the patient of a skilled therapist is the best way to learn effective communication, for me better than any counselling course, in-service training, supervision or textbook.

Psychotherapy is viewed by many as a 'special treatment' whereby the therapist does something to the patient. I think it is important to explode this myth so that all nurses and carers can practise psychotherapeutic intervention. A psychotherapist acts not so much as a skilled mechanic working on a machine, but as a caring and skilled gardener offering a nourishing environment in which living things are helped to do their own growing. A therapist therefore acts not as controller but as facilitator, and this involves having the courage to take the lead from the patient, no matter how chaotic and seemingly senseless that may be.

After another three months Millicent began to approach me for our sessions, rather than the other way around, which I felt strengthened my lonely assertions about therapeutic intervention. I was told, however, that all I was doing was creating a dependence which would lead to further problems when I left the job. I insisted that Millicent would be leaving the day hospital before I did, but even to my own ears I sounded arrogant and unconvincing. Millicent was expressing the same doubts herself:

Millicent: "If we just hold on. If we just pull together we'll be alright."

Sally: "What else do you think we have to do?"

Millicent:"We have to hold on together."

Sally "What are we holding on to?"

Millicent: (looks worried) "Are you going to go away? Are you going to stop holding on?"

Sally: "No, I'm not, but what would happen if I did?"

Millicent: "It would be so much worse."

Sally: "What's the worst it could be?"

Millicent: "I'd be lost."

Sally: "What does it mean to be lost?"

Millicent: "I'd be alone."

It took me an inexcusably long time to make the connections between Millicent's fear of losing me and her obvious distress each morning when she was left by her sister. With a bit of persuasion I obtained permission to meet with Millicent and Henrietta together, and then things began to fall into place. It emerged that Henrietta, who was nearly ninety and had always taken care of her younger sister, had been having increasingly severe angina attacks, a fact which she had concealed from the staff at the day hospital, from her own G.P. and, so she thought, from Millicent. But over the past year Millicent had sensed that something was very wrong and had become paralysed by the fear that Henrietta was going to die. Henrietta had suffered alone, not wishing to burden anyone and wanting only to protect her little sister, while Millicent, unsure of what was happening and unable to verbalize her fears had gradually regressed to an all-consuming state of repetitive, obsessional worry - a state not dissimilar to many manifestations of dementia.

Through talking to the sisters together Millicent's abstract ramblings began to make perfect sense, and eventually she was able to verbalise her fears that Henrietta would die and leave her to cope alone for the first time in 84 years, a prospect which she found terrifying. The three of us began to meet regularly, a situation where I often felt quite out of my depth, but always with a sense of the great privilege it was to be witnessing these two extraordinary old ladies sharing their fears for the first time, remembering incidents from long ago which they had never discussed, and affirming their great love for each other. All this made me very aware of my own feelings of impotence, and my denial of what was so very obvious. Even with the new tablets prescribed for Henrietta's heart she was still ninety years old and that was well above the average life-span. Millicent herself was a very old lady. Increasingly I became aware that either of them could drop dead at any moment.

The Big D-Word

It is interesting that in my long induction period to working with the elderly, during all the planning meetings, training sessions and informal chats, there was one word that was never mentioned. Death. Yet it would seem logical to suppose that in old age, when considering the future, death would certainly be on the agenda. The subject was frequently mentioned in the day hospital by patients and always avoided by the staff. For example,

Patient: "I feel so ill. Am I going to die, doctor?"

Doctor: "No, no, plenty of life in the old dog yet!"

Patient: "It won't be long before I'm six foot under."

Nurse: "Now don't be so morbid - come and have some lunch or you'll starve to death!"

Patient: "I'm looking forward to Christmas, that is, if I'm still here."

Nurse: "Don't be daft - you'll see many more Christmases. You look so good you'll probably outlive me!"

It was common practice to joke away any mention of dying, to "boost morale" by positive thinking and to discourage "morbid thoughts", but I felt dissatisfied with the avoidance of what was so obviously a vital issue. I also felt totally uncomfortable talking about the D-word myself, and it was through examining my own reluctance that I became aware of the enormity of the task. For it was not only the accepting the proximity of death to the patients whom I liked so much that was difficult. It was also accepting my own mortality, something that at the age of twenty-four I just did not want to consider.

One incident springs to mind particularly. A young doctor and a staff nurse were examining an old lady who was dying of cancer and had developed a urinary tract infection. After the examination I found them in the office, the doctor white-faced and drawing heavily on a cigarette while the nurse flirtatiously teased him about his "new girlfriend." When I asked what was wrong he laughed and told me,

"Sorry I'm just recovering from a nasty encounter with Rose's fanny. You should have seen the state of it!"

The nurse giggled and I was struck not so much by the callousness of their response, but by the obvious anxiety which "Rose's fanny" had provoked. What was the nature of this anxiety? To my mind there was something very symbolic about the ancient, dying, reproductive organs of an old woman which triggered deep unconscious feelings in both doctor and nurse, and it was these intolerable feelings which were displaced into repulsion and humour. Nurse and doctor had thus bonded in a defensive alliance, asserting their youthful sexuality while detaching themselves totally from the patient as a person.

Isobel Lyth Menzies (1988) wrote an excellent paper on the primitive and intense anxieties aroused by nursing, and the defences used to contain this anxiety. As other contributors to the text, notably Maureen Crooks in Chapter 1, have acknowledged, these defences all represent ways of creating distance between us and the person who evokes this anxiety. Throughout my time in the elderly day hospital I was constantly aware of the evasion of feelings and the general reluctance to confront the issues which seemed most pertinent to working with patients in the last stages of life. The emotions produced in this situation are wide and varied, but I would suggest that a major factor in our detachment from the elderly is an unwillingness to accept these people as like ourselves or, more importantly, like our future. For, after all, we will all one day die, and most of us will experience some degeneration of old age. On an unconscious level, then, working with the elderly cannot but trigger our deepest, most primitive fear, the fear of annihilation.

Don't Dwell on the Past

After death, the second big taboo was history. The basis of reality orientation lies firmly in the present, yet I began to notice that the patients were at their most interested and animated when telling me about the past. The memories, naturally, were often distressing - the deaths of loved ones and other traumatic events figured strongly in conversation, and I was very aware of the constant urges of the staff to "forget".

"Come on now, cheer up, you can't live in the past", was a frequent response to a patient's tearful reminiscence. There was a general feeling that to think about past pain was not only futile but could make the patients even worse, and I was frequently told that opening up old wounds was a very dangerous business, a "bag of worms".

Six months on Elisabeth was still attending the day hospital and still refusing to do anything but chain-smoke and touch up her scarlet fingernails. From our brief conversations I felt that Elisabeth had a lot to say and I got the impression that she just needed the right environment. I was convinced that the right environment was in the reminiscence group which I was running with an occupational therapist, a new group which I was very excited about. I felt that I had found a kindred soul in Jenny, the occupational therapist, and for the first time since starting the job a year before I felt confident that I was doing something worthwhile - enabling people not only to tell their stories but, as Gerald Egan (1990) advocates, helping people to understand, accept and share their stories. The group had been going a month and was held once a week on a Wednesday, a closed group for eight patients whom Jenny and I had thought might benefit, one of whom was Elisabeth. So far Elisabeth had adamantly refused to attend.

One Wednesday I was trying, as usual, to encourage Elisabeth to join us. She had run out of cigarettes and was extremely angry that the staff had refused to go to the shops for her to buy some more.

Elisabeth: "I'm not going to your group - you can't make me."

Sally: "I'm not trying to make you do anything - you can choose what you do here, but I'm just telling you about the choices."

Elisabeth: "Okay - you've told me. I'm not going."

Sally: "Why not just give it a try? You can always leave if you don't like it."

Elisabeth: "Look I don't want to come to the bloody group - I just want a fag. Will you get me some?"

Sally: "I'm sorry I can't do that."

Elisabeth: "Why not?"

Sally: "I'm not allowed to."

Elisabeth: "Why not?"

Sally: "Because this is a hospital and it's considered unethical for staff to buy cigarettes for patients."

Elisabeth:"You agree with that do you? You smoke yourself, you bloody hypocrite."

Sally: "Well - I -

Elisabeth: "Look what I'm saying to you is if you want to help me go and get me some fags. You know I'm stuck in this bloody wheelchair and I can't get to the shops. You're the one who's always talking about choice - well, I'm choosing to smoke, and if you don't get me my fags then you're denying me the choice of how to live my life."

It was a truly ethical dilemma. I thought about it. Elisabeth winked at me.

"If you get me my fags I'll come to your stupid group," she said.

The dilemma was solved, and I ran off to the shops.

Later, when I was being disciplined, the Charge Nurse reminded me of one of our foremost rules - never use bribes as a means of getting a patient to do something. He did not seem to understand that it was I who had been bribed.

Elisabeth came to the group, sat rigidly silent throughout, and pretended not to be looking at the old photographs we were passing around. The group was run by letting the patients take the lead. We provided stimuli, in the form of old objects and photos, and then followed whatever conversations emerged. One of the patients, Eva, who had been diagnosed as having Alzheimer's, was vividly remembering the war, describing how she had sat in an air raid shelter, listening to the bombs fall and holding hands with her brothers and sisters in the candlelight.

"It was awful," she was saying. "Ooh it was terrible, but when we all held hands I felt allright - I wasn't scared then."

"Yes," agreed Millicent. "If we just hold on we'll be allright."

"Shall we do that now?" suggested Jenny. "Come on, lets hold hands."

Everyone tentatively reached out, except Elisabeth.

"What are you then?" she asked Jenny. "Some kind of lesbian or what?"

"Oh that's it," said Eva "Don't we look funny - but it's ever so nice."

Everyone agreed.

With a look of disgust and a sigh of resignation Elisabeth slipped her hand into mine and stared intently out of the window. I was surprised at how much her hand was shaking. Everyone else carried on talking about the war, and the circle of hands remained intact until the end of the group.

The following week Elisabeth came to the group again and once again kept silent for the most part, except for occasionally correcting people on the dates of certain notable events. Towards the end of the group, however, she began to fidget, and I could tell she wanted to say something. The other patients were animatedly discussing ration books and Jenny asked Elisabeth what she remembered missing during the war.

"Are we going to hold hands again?" asked Elisabeth.

Beyond Words

The importance of touch cannot be underestimated, particularly for the elderly who have perhaps lost intimate relationships, and who are often acutely aware of the degeneration of their bodies. It is sad that in our culture old age is so often equated with ugliness, and the simple joys of stroking and caressing are often not on offer to the elderly. Much has been made of the benefits of animals for old people and a local resident in the community frequently brought her pet labrador into the day hospital for the patients to pat. But I think this can only be a substitute for the human physical contact which is missing in so many elderly peoples' lives.

Jenny, the occupational therapist, developed a very successful "hand massage" session as part of a gentle exercise group, basically just stroking and rubbing the fingers, hands and wrists, an activity organised in pairs which was so popular that it frequently became a part of the "talking groups" too, at the request of the patients. Obviously touch is very emotive and can produce both pleasant and unpleasant feelings, so one must always be cautious in instigating physical contact, but I found Jenny's hand massage work to be extremely effective and acceptable in an unthreatening way to most people across different cultures. As a two- way exercise it gives the patient not only the pleasure of receiving, but also of giving, and, for ourselves, there's a lot to be said for the experience of really seeing and feeling a hand that has worked through a lifetime.

Elisabeth became our top hand masseur and progressed quickly to necks and shoulders. She still said very little, except when she needed cigarettes, or to put one of us in our place with her caustic wit, but she consistently attended the reminiscence group, which Jenny had eclectically re-named "talking and touch."

It was a long time before Elisabeth told her story. There is an uncomfortable feeling about silence, but for Elisabeth, and for many of the patients I worked with, silence can be a powerful form of communication. I was a little nervous of Elisabeth: she had a sharp tongue and a knack of homing into peoples' weaknesses, but I began to make time to sit with her for short periods. I always asked her permission and she always gave it, with important reservations.

Sally: "Can I sit with you for a while?"

Elisabeth: "If you must."

Sally: "Does that mean you'd rather I didn't?"

Elisabeth: "You can sit next to me but don't start asking me any of your stupid questions."

So Elisabeth and I spent many times together sitting in silence. The odd thing was that Elisabeth did not show the least anxiety about this. Often when I went into work she would nod at me and then at the empty chair next to her, but when I went to join her she would not say a word. The anxiety was all mine. I was confused about my role but I felt somehow that what was happening was important. Here was a woman who was in such great pain that she had tried to take her own life. I concentrated on my own feelings, what was making me uncomfortable in the silence, and gradually I was able to relax with Elisabeth. I need not, however, go into the immense derision I received for going to work, sitting on my arse and saying nothing. It was many years later that a supervisor in the social services pointed out to me that this was probably my greatest skill, and he wasn't being sarcastic. I think what many professionals find difficult is simply to be with people, and to allow them to be as they are. When confronted with extreme emotional distress I think there is a natural urge to do something, to say something,, to change something, and we can so easily forget that the first step is to hold what is there.

For Elisabeth I think both silence and touch were important factors in allowing her to feel safe enough to tell her story, which eventually she did. And I cannot begin to do justice to that story, which was the stuff of great novels, and yet which was sitting there before me, very much in reality. Gradually over the first six months of the reminiscence group Elisabeth began to talk about her life, not just to me but with other staff and patients in the reminiscence group. She was an incredibly bright woman with a great deal of insight, and her observations ceased to be vindictive and began to be useful to herself, to other patients, and to me.

Something that had always interested me was how the reminiscence group always ended up talking about the war. It had always seemed to me that the war was remembered for being a happy time when people bonded together with united purpose and great camaraderie, but Elisabeth shed more light on this. We were passing around an old ration book.

Eva: "Ooh yes, I remember that - look, two ounces of butter - you had to spread it on thin, but it tasted like heaven. I used to cycle 15 miles up to the farm for a single egg."

Elisabeth: "You really appreciated it didn't you? Not having so much."

Eva: "Oh yes. But you always wanted more!"

Elisabeth: "Well, we're on short rations now aren't we, love?"

Eva: "Rations?"

Elisabeth: "Well life's rationed isn't it - and we've nearly used up all our tokens."

(Everyone nods)

Elisabeth: "I mean it's a bit like the war now isn't it? That's what it was like. Never knowing if you'd be blown up, or if you'd see your brother again. I feel like that now - I could go any minute."

So it was that Elisabeth began to make connections between the stroke she had recently suffered and her subsequent suicide attempt. Although she had never talked about the stroke, and brushed it off to her friends and family, the threat of illness and death had been terrifying for Elisabeth, and had thrust her into a deep depression. Noel Hess (1987) has written about this fundamental anxiety of old age: the dread of being abandoned to a state of utter helplessness which can easily be triggered by the catastrophes of old age, such as stroke and dementia. Again I feel that Elisabeth would have benefitted enormously from talking to a trained psychotherapist, but what struck me most was that, given time and the space to interact as she chose, she naturally progressed to identifying her internal turmoil and resolving her conflicts. For Elisabeth, as for everyone I worked with, the past was essential in understanding the present.

Everyone has a past - even Jimmy

The reminiscence group was eventually grudgingly accepted by the staff as being beneficial but only, it was stressed, for those patients who were "intelligent and articulate" i.e. those not suffering from dementia. Jimmy, meanwhile, continued to rampage around the hospital, despite his ever-increasing dose of tranquillisers.

One day, as we sat looking at some favourite photos of the war Jimmy stormed into the reminiscence group, kicked a chair across the room and told us all to fuck off and fuck ourselves. Never one to miss an opportunity Jenny silently showed him a photo of Hitler. Jimmy stared hard at the photo and then snatched it from Jenny's hand.

"Fucker!" he shouted at Hitler.

Jenny handed him another photo, this time of a group of British soldiers in uniform. Jimmy took the photo and looked at it intently. Then he looked up at the group. We waited. Jimmy looked back at the photo and then turned to us - and saluted. It was the first time I had ever seen him smile. Suddenly everyone was saluting and Elisabeth started singing "Pack up you troubles in your old kit bag and smile, smile, smile." Jimmy was laughing a deep throaty chuckle and saluting us all and there was such a commotion that the Charge Nurse came in to see what all the noise was about. Jimmy saluted the Charge Nurse, and the Charge Nurse saluted Jimmy, and from that moment on everyone always addressed Jimmy as "Sir!"

The change was both immediate and extraordinary. From a situation where it had taken two large male nurses an hour to get Jimmy dressed in the morning we found that now a single small member of staff could greet Jimmy with a salute, hand him the appropriate clothes and leave him to it. Of course sometimes he got it wrong. Jimmy still appeared for lunch with his jumper inside out or his shoes on the wrong feet, but given a salute and a prompt he would laughingly rectify the situation. The quality of Jimmy's life could not but improve. No longer afraid that he would smack a passer-by in the mouth, we were able to go out for walks with Jimmy, to the park and to shops. Jimmy had somehow found his passport to the outside world. He didn't talk but everywhere we went he made friends. It's amazing how many complete strangers will salute you in the street, given half a chance.

I had always been told that it was important never to collude with patients in their delusions, so our new way of working with Jimmy certainly posed some ethical dilemmas. Suddenly all the staff were behaving in an ostensibly bizarre manner, reinforcing some distant memory of another time and place. But the change in Jimmy seemed to justify it all, for not only was his care now easier to manage, but also for the first time in his hospitalisation he appeared to be happy.

No one will ever know what was going on in Jimmy's head, but by a stroke of luck and coincidence, something had triggered a resolution within him. A salute - that small gesture of respect - seemed to symbolise an entire agenda of interaction and communication which for Jimmy had been almost lost. Was our new mode of interaction patronising, infantilising and dishonest? I think rather that Jimmy had found a tolerable reality of his own, and that it was our duty to accept that reality as a peaceful end to his journey.

Conclusion

Everyone has a story. The way people tell their stories is infinitely varied and often the means of communication is very different to our own. I hope to have shown that certain ways of working with the elderly may actually deny patients their own reality and thus hinder what Elisabeth Kubler Ross (1969) sees as a natural resolution of conflict before death. I would suggest that the role of the nurse, therefore, should be as facilitator, enabling patients to define their own reality, to tell their own stories, to make sense of their own unique experiences, and to find peace at the end of their lives.

I found that working with the elderly was a two-way therapeutic process whereby I learned to value the wealth of the near-complete life cycle, and so gained insights into my own life. I no longer work in mental health, but this experience informed and enriched my current work as a writer, for I was given the gift of more stories than one could write in a lifetime. There are stories everywhere, all around us, better stories than any Hollywood movie or T.V. soap opera. All we have to do is stop and listen.

References

Morton, I and Bleathman, C. 1988: Does it matter whether it's Tuesday or Friday. Nursing Times. Vol 84 No. 6.

Shakespeare, W. 1608: King Lear. Penguin.

Feil, N. 1982: Validation - the Feil method. Cleveland: Edward Feil Productions.

Segal, H. 1980: Fear of death: notes on the analysis of an old man. In The work of Hanna Segal: delusion and artistic creativity and other psychoanalytical essays. Free Association Books, Tavistock, 173 - 182.

Menzies, I. Lyth. 1988: The function of social systems as a defence against anxiety. In Containing anxieties in institutions; selected essays. Free Association Books, 43 - 85.

Egan,G. 1990: The skilled helper - a systematic approach to effective helping. 4th ed. Brooks Cole Publishing, California.

Hess, N. 1987: King Lear and some anxieties of old age. British Journal of Medical Psychology. Vol. 60, 209 - 215.

Kubler Ross, E. 1969: On death and dying. Tavistock/Routledge.

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