SOCIAL ATTITUDES TO DEATH

 

Most people die in hospitals and not at home any more. This seems to be largely expected, and it feeds our fear. We shy away from closeness to a dying person, and from seeing the body, and, even if the relatives are there, in the hospital at the time, the body will be quickly whisked away and never seen again. Many people have no contact, before, during or after the event.

Yet basic, primitive and stark, hidden behind a curtain, death remains, and human imagination cannot resist it. We need to take a little peek now and then, and so we lift a corner of the curtain to get that frisson mingled with fear. The media know this and feed our desire by showing violent death in all its detail. The producers seem determined to show the most horrifying and bloody pictures. And this is as much as most people see, or want to see, of death.

Some producers have tried to show, realistically, on television how people die, and, on a couple of occasions, have actually filmed a man whilst he is dying. I am not sure whether this is helpful or not. It certainly shows that dying is not a time of physical pain or mental distress, but of peace and quietness. This is probably reassuring to some people. But, on the other hand, it is only a ‘virtual reality’. But perhaps that is what people want. The idea of filming a man dying quietly in his bed so that viewers can get an impression of what goes on is no doubt praiseworthy, but, of reality, they will see virtually nothing.

Only those who have been close to the dying and seen death in all its awesome mystery can get a glimpse of what it is about – and even then only a glimpse. The whole picture includes a spiritual dimension. God is not in the churches, or the mosques or synagogues. He resides not in temples and minarets. God is not the possession of priests or rabbis or mullahs. God is at the deathbed, tenderly drawing the living soul from the dying body. God is in the grief and suffering of those who are left behind, who catch a glimpse, perhaps for a few fleeting seconds, of what life and death are all about.

Reality is not to be found in a television screen. The closeness to real death means, inevitably, closeness to our mortality and questions about the divine. Perhaps this is too much to take. If we can find no spirituality in life, death is an uncomfortable reminder of a missing dimension.

We have to go to a very different society and mingle with a people closer to nature to see a more realistic approach to death. In southern Morocco, in 2007, I was invited by a young Moslem woman to take tea with her family in her home. We entered a hole in the wall and went down a long, dark passage towards a dim light and into a tiny kitchen. There was a central place for a wood fire on the floor, and a hole in the ceiling let out the smoke and also let in the daylight. We went from the kitchen to a large room, about thirty feet by twenty. A beautiful carpet lay on the mud floor, and around the walls cushions were scattered on the floor for seating. High windows let in the daylight and oil lamps stood on low tables. Silk hangings adorned the high walls. The room was both elegant and beautiful. There was no upstairs, so this one space, plus kitchen, was home for the entire family. Other women and children came in, eager to see the stranger in their midst. The lady of the house, in good French, invited me to sit down whilst she made the tea. The cushions were very low, and I was apprehensive about sitting down in case I made an exhibition of myself trying to get up again! Seeing what at first I thought were some higher cushions I walked towards them. The lady must have read my mind or, if not, it is as well she spoke when she did.

‘That is my grandmother. She is nearly a hundred years old. She is near the end of her life, and Allah will come for her soon.’

A woman was cooking, another feeding a baby, children were running around, and an old woman was dying. This is the realistic acceptance of death. The children will take it in their stride, as children always do, and as they grow up they will look upon death as a natural part of life. They had probably seen birth in that room and, without being told, had absorbed the fact that birth, life and death are all part of the whole.

But we cannot see this. We are too busy ‘getting and spending’. The hush and momentary time-stop of the deathbed plays no part in the rush and perpetual motion of our busy lives. ‘Death? What is it to us? We want to live, live, live – don’t be morbid. We want sex, fun, sensations – don’t be a bore. We want money, careers, possessions – don’t be a drag. Friends, relationships, travel – these are the things we want. Death doesn’t come into it. Go away!’

Each of us is going to die, whether we like it or not, but it only hinders acceptance of the fact if we never come near it. If we could see the infinite variety of emotions, insights, experiences and delight in little things that are granted to people as they approach the end, if we knew how human understanding and love can grow and flower in the last stages of life, if we witnessed the peace and tranquillity that is given to us in the last hours before death, we would be less afraid.

The Berber children saw the tranquillity of death in that sunbaked room in Morocco. But we seem to think that our children should be shielded from it. ‘He is too young to be told. It would upset him,’ I have heard. And on another occasion, ironically from a professed atheist, ‘We didn’t know what to tell her, so we said that Granny has gone away to live with the angels in the sky.’ This sort of over-protection is misplaced. Another generation will grow up, remote from reality, and they, in turn, will want no contact with death or the dying. Parents who think they are shielding their children from something unpleasant are ensuring that, when their own time comes, they will be left to die alone.

Yet children are increasingly exposed to violent death on film, television and computer games. They have a morbid fascination for horror and many are allowed unrestricted access to these sources, so they are able to see people carving each other up, and inflicting unimaginable suffering. And this is the generation of children whose parents imagine they are too tender to be exposed to natural death. What an irony!

Many years ago Anthony Bloom, Metropolitan Archbishop of the Russian Orthodox Church in England, played an important role in my life. He said that, when he first came to this country, the thing that horrified him the most was the attitude to death that he encountered. As a Russian, he came from a nation and a church where death was a normal part of life, something we all have to face, something known, seen and accepted. But, in this country, he was shocked to find that death was almost regarded as an indecency, provoking the most profound embarrassment, and certainly not a subject to be talked about. To his surprise and dismay, he found that meaningful contact with death was comparatively rare.

He said that he visited an English family where a much-loved grandmother had died at home. The family was grieving, but the children were not around. He asked where they were, and was told that they had been sent away because they should not see ‘that sort of thing’. In surprise he asked, ‘But why not?’ It was the father’s turn to be shocked. He said it was quite unthinkable. The children knew what death was because they had seen it when a rabbit had been killed and half eaten by dogs in the garden, and they had been terribly upset. He and his wife had agreed that they must be sent away because they might have wandered into Granny’s room while she was dying or, which would have been far more upsetting for them, when she was actually dead. Such a possibility could not be countenanced.

Did these parents really mean to leave their children with the idea that their grandmother was now like the dead rabbit, savaged by dogs? Children are highly imaginative. They would have sensed that something was wrong in the looks passing between adults, the hushed voices, the unfinished sentences – the ‘not in front of the children’. Or worse, they might have been told silly lies about their grandmother’s condition, which they would neither believe nor understand. Finally, to be sent away at a time of family crisis would have alarmed and frightened them. Their imaginations would have been inflamed, and they might have invented all sorts of lurid tales about the thing that was happening to Granny that was so terrible they were not allowed to see it.

In being kept away, they were denied seeing the true mystery and nobility of death, which any child can understand. They were not allowed to see their grandmother’s slow decline, nor see her lying quiet and still, nor feel the aura of calm and peace, in fact, holiness, that surrounds the newly dead. They were left to invent their own frightening stories.

And when they returned home, Granny would be gone, with no last days in which to tell her they loved her, no chance to say goodbye, no time to adjust, no funeral –just gone.

David Hackett, consultant cardiologist, is the clinical editor of this book. His wife, Penny, is a nurse and the family is Irish. I was sitting one fine spring morning in their big kitchen with its wide windows overlooking the gently rolling fields and woods of Hertfordshire, talking about this book. It was half term and the children were home from school.

He said, ‘When my mother-in-law died in 2005, in Ireland, she was laid out in the front room, which was the custom. Family and neighbours came in to pay their respects and to say goodbye. My children came, too, to see and to touch their grandmother. I don’t think it upset them.’

I turned to the two children. ‘Did you find it scary, seeing your dead grandmother?’

The boy, aged about thirteen, gave me one of those teenage looks that suggests, ‘Here’s another silly grown-up asking silly questions!’ The girl, two years older, spoke: ‘Well, no … no, not really … just …’ She shrugged, then after a moment’s thought: ‘Just sort of ordinary. She looked … well… sort of asleep. Sort of … peaceful, like.’

She looked towards her brother and he nodded, ‘Hmm, yeah,’ and carried on chewing his toast – I like a man of few words! Obviously neither of them had been upset, much less traumatised, as some people might predict.

I was having lunch with an old friend, Mark. We were talking about my forthcoming book and he suddenly said:

‘My mother died in 1950 and we children were never told.’

They learned, many years later, that their mother, Julia, had developed phlebitis, apparently after the birth of her fourth baby. A clot had dislodged itself, travelled in the bloodstream, and blocked a pulmonary artery, and this had killed her.

Mark was nine at the time. His brother Robert was six and their sister Marian was four and a half. There was also a baby called Fiona, who was about a year old. They are now in their sixties and I have spoken to them all recently.

Both men told me that they could remember an ambulance coming to the house and taking their mother away. Some time afterwards (they cannot remember how long) family friends took the two boys on holiday, to the seaside. It was during this period, they have since concluded, that their mother died and the funeral must have taken place. At the end of the holiday their father joined them, and took them home to a house with no mummy.

Mark said, ‘It was very quiet, very bleak, and we didn’t understand why.’

Robert said, ‘There was a sort of black hole that we couldn’t talk about. No one said we were not allowed to, but you know how children pick up messages. We just knew that it was something the grown-ups wouldn’t approve of us talking about.’

I said, ‘Didn’t you ask questions?’

They had received vague, woolly answers, such as ‘Mummy’s gone to Heaven.’ Later, one of the boys asked where Marian was, and was told that she had gone to stay with Grandma.

Marian tells me she remembers it very clearly as a time of great unhappiness. Her grandmother was rather a remote figure. She says, ‘I was lonely, bewildered, wondering all the time why I was there and not at home. Daddy came to see me from time to time, and then he went away again. But he never brought mummy, and I didn’t know why. I thought perhaps I had been naughty and she didn’t want to see me.’

After about six months or more her father came and took her home. Apparently she ran around the house looking in every room, calling out, ‘Where’s Mummy? Where is she?’ Her father said, ‘Mummy’s gone to Heaven.’ She responded, ‘Well, where’s Heaven? How did she get there? Did you take her? Why don’t you go and get her back?’

Eventually, she became aware, as her brothers had earlier, that it was something you just didn’t ask questions about.

Childhood grief is beyond my competence to discuss, but other writers have spoken about the loss of a mother being devastating to development. Fears and fantasies, depression, endless searching, low self-esteem, low achievement in school, a solitary child who cannot form friendships – these and many more psychological disturbances have all been discussed. Feelings of guilt and self-reproach also come into it.

Mark said to me, ‘I felt that it was all my fault, and I couldn’t admit it to Robert and Marian. You see, I was the eldest, and I was a “naughty boy”. I was always doing something that “upset” my mother. And I thought I must have done something really bad, and she had got so upset that she had gone away and wouldn’t come back, and so I was to blame.’

Marian said, ‘While I was with Granny I thought I was being punished for something I had done wrong.’ At the time she was only four years old.

‘The death of a mother is devastating for any child,’ added Robert, ‘but I am sure that the silence made it ten times worse for us.’

But I was forgetting; Julia left four children, not just three. What had happened to baby Fiona, from whom the older three were separated? She had been looked after by an aunt and uncle, and eventually they adopted her into their family.

Fiona told me that she was too young to remember the time of Julia’s death, and grew up in her adoptive family thinking that Mark, Marian and Robert were her cousins. Fiona understood this was considered to be the best solution, as she was so young. She did remember being told the story of Julia who had died, but did not relate it to herself.

‘So when did you find out?’ I asked.

‘When I was twenty-one and needed access to a full birth certificate for a visa. For years, I felt constrained about discussing the past; it is only since my parents have died that I have felt free to talk about it.’

During that memorable lunch with Mark, he said, ‘I can see now that I have been searching for something all my life and never found it.’ The moment was deeply sad, and I did not know what to say.

The social taboo surrounding death is deep-seated, and it is most unhealthy. How has it developed? How has it sneaked up on us? The Victorians and Edwardians used to wallow in their death scenes and funerals. Why has the pendulum swung so far the other way, so that a death is neither seen nor mentioned?

I have a theory (which deserves further research) that it started after the First World War (1914—1918) when eight and a half million young men worldwide died in battle, when twenty-one million were maimed or mutilated and when upwards of forty million died in the flu epidemic of 1918. And the carnage didn’t end there. The bloodiest century in history killed up to half a billion men, women and children. Everyone was so sickened by death and loss and grieving that perhaps they just couldn’t take any more. So they turned their backs, and thus started the climate of denial that inhibits us to this day.

 

 

Man was made for Joy & Woe;

And when this we rightly know

Thro’ the world we safely go.

Joy & Woe are woven fine,

A Clothing for the Soul divine;

Under every grief & pine

Runs a joy with silken twine.

— William Blake, Auguries of Innocence

 

GRIEF

 

Cycling in south-west Ireland has been one of the loveliest experiences of my later years. The further south and the further west you go, the more remote it becomes. Hills and sky and clouds blend into the blue-grey distance. Gullies, streams and rivulets meander down to the ever-present sea. Lochs, still and grey as the granite of the hills, lie secretive and cold as ice. Cycling – meandering, really – on unmapped roads you pass through tiny villages of about fifty houses, hamlets each containing no more than four or five buildings, or remote dwellings set into a hillside, almost indistinguishable from the hill.

I recall once, passing a church. It was quite small, and in no way beautiful, but the church in its setting, with the graveyard all around it, and the hills, multi-coloured in the changing light, was so arresting that I had to stop, just to sit and gaze.

As I looked, the door of the church opened and a priest, wearing full Roman Catholic vestments, emerged. He made his way solemnly down a gravel path to the graveyard. He was followed by an acolyte, bearing the cross; followed by eight small boys in white cassocks; followed by two larger boys holding candles; followed by another acolyte, swinging his censer from side to side; followed by yet another acolyte, carrying the book of service; followed by a coffin, carried by eight men wearing black; followed by an elderly woman in darkest black, and veiled; followed by eight or ten younger men and women, all in black, with their children carrying flowers; followed by about a hundred men, women and children in everyday clothes, most of them carrying flowers.

The procession made its way down the path to a newly dug grave, covered by three trestle boards upon which the coffin was placed. The people gathered around the grave – the immediate family stood closest to the priest and his acolytes, the others scattered further away. The priest read the office of burial, responses were made, a hymn was sung, and the trestle boards were removed. As the coffin was lowered into the earth, the priest sprinkled holy water on it, and many people threw in flowers. Two men with shovels came forward and heaved the soil on to the coffin. Everyone stood silently, and, when the job was done, they laid their wreaths on the new grave. People gathered around the widow and her family, and the whole entourage made its way towards the church hall. At which point, I slipped away.

You’ve got to hand it to the Catholics – they sure know how to do a funeral!

But what do we get in this age of fast foods, faster living and instant entertainment? Twenty minutes in the aseptic atmosphere of a crematorium, piped music, electronically moved doors and curtains, a speech prepared by a stranger, ever present morticians, discreetly keeping things ticking over and on time. When the coffin slides out of sight, they ensure that the mourners are quickly led away, orderly, neatly, to make room for the next funeral party which is waiting outside. This is but a mockery of a funeral, as far as I am concerned. And who loses out? Not the dead; it is of no interest to them. But it is important for those who are left behind – those who grieve. They are the ones for whom the banishment of ritual can be so damaging.

Human beings need ritual; we need sacraments and symbols and ceremonies. We need the bell that tolls a solemn note, and a prescribed formality fitting for the occasion. We need somewhere to lay the flowers or tokens of remembrance. It does not have to be a burial; a cremation is just as good – better, in some ways. It is the solemn ritual before and after that is so important.

Nothing is more shattering than the death of a child, and often the parents never get over it. Early in 2008 I was shopping in our local high street when I suddenly became aware that everyone was looking behind me. I turned around and saw the approach of two magnificent white horses, drawing a carriage. Their dressage was white, and beautiful white and silver plumes adorned their heads. The coachman wore silver grey. As the white and silver carriage drew closer, then passed us, we saw that it was not a carriage, but a beautiful glass bier, upon which lay a tiny white coffin about three feet long adorned with white lilies. The bier was followed by four funeral cars with blackened windows. The contrast was startling – shining white for the dead child and blackest black for the parents and those who mourned. The greater the grief, the greater the need for ritual.

Everyone in the street stood quite still whilst the cortège slowly passed on its way to the church at the end of the road. The parents must have seen (though we could not see them) the people standing quietly in the street, and I hope that the respect we showed was of some comfort to them. I looked around the crowd and was impressed by the solemnity on all the faces. That experience was what I would call community ritual, something I had not seen for years.

Community ritual has largely been stripped away, and I doubt if the majority of young people would know what I am talking about. Social life used to stop for a funeral, as everybody paused in their daily affairs out of respect for the dead.

I remember well the death of my grandmother, when I was about twelve. She had a heart attack at home and died in her husband’s arms. Her body was laid out by the local handywoman, who was also the local midwife, and placed in an open coffin in the main room for friends and neighbours to come in and pay their respects. This was common practice. It may seem gruesome now, but in those days practically everyone felt it was right and fitting to go to the house with the purpose of seeing the body. They would stand quietly beside the open coffin, offer some suitable words of condolence to the bereaved, and perhaps reflect for a few minutes on life and death and their own mortality (nothing concentrates the mind so powerfully as the sight of a dead body). This is still practised on state occasions and on the death of royalty. It is a practice that is also routine in the Orthodox Church.

On the day of my grandmother’s funeral, the street was quiet. Every house had the curtains drawn and neighbours stood in their doorways as the funeral procession passed on its way to the church. Shopkeepers closed their shops for a while, and this ritual greatly helped my grandfather. I know, because he told me so. ‘She was treated with proper respect,’ he said. Afterwards, he did not have to hide his grief because neighbours understood and gathered round to support him. He lived alone for twelve years after her death, but was never lonely.

For many years afterwards the whole family gathered at Grandad’s house on her birthday and took flowers to her grave. I remember my uncles and aunts, a noisy bunch, joking their way through the woods to her graveside, where we all sang her favourite hymn. Then we all walked back to the house for a party. For my grandfather, this continued family ritual was just as important as the rituals at the time of her death.

Bereavement can be a devastating event. Dark clouds seem to cover the face of the earth. Reality evaporates and movement is suspended. An abyss of despair seems but a step away. The experience is very much eased if you have had the time to prepare for it, but there is no preparation for sudden or violent death and the shock that comes with it. The distress can be so traumatic it can lead to illness, and if the relative has to go to the mortuary to identify the body, particularly if it has been mutilated, the trauma can go on for years. There is always the question, ‘Why? Why did God allow it? There can be no God if such a thing can happen.’ Rage, hatred, and bitterness can burn or corrode, and often there is anger. Usually, God has to take all the blame, even from people who don’t believe in Him. Depression can follow, and years of professional counselling may be necessary. If true clinical depression develops, anti-depressant and psychiatric drugs are often prescribed: but this is not always the best way of treating a severe response to a life event.

In bereavement, only time – occasionally years of time – can heal and allow the person to start living again. It is a time of emotional crisis, and the greatest need is for companionship – not all the while, just someone to be there from time to time to listen, talk, occasionally to hold a hand, or even to take over for a while. But sadly most people, especially elderly widows, find themselves isolated and edged out of society if they have no man to accompany them. Most of us are so screwed up about death that we cannot even bring ourselves to talk to someone in mourning and the feeling of abandonment compounds the loneliness that inevitably follows the loss of a life partner or loved one.

Consequently, the bereaved will often try to hide their grief in a number of ways. They try to be cheerful and pretend everything is all right when, really, they are breaking apart inside and only want to cry and cry. Suppressing grief is a recipe for disaster and many people who act in this way suffer physical or mental ill-health at a later date.

Society has changed so much in the last fifty years. Families are smaller and move about more, communities barely exist – a group of strangers thrown together cannot be described as a community. Counsellors take the place of friends and neighbours, and bereavement groups replace communities. These are vitally important, and some have described them as lifesavers – ‘I don’t think I would be alive now if it had not been for my counsellor’. All hospices, NHS hospitals, most local councils, and most churches run bereavement groups in which people can sit and talk about their loved ones – and simply talking about the departed is frequently all that is needed. Such groups are important, because someone who has already suffered and recovered from a devastating loss can communicate meaningfully with others in the same position.

To be present at the time of death can be one of the most important moments in life. To see those last, awesome minutes of transition from life into death can only be described as a spiritual experience. And then afterwards, when the body lies still, one gets the strange feeling that the person has simply gone away, as though he has said, ‘I’m just going into the other room. I’ll leave that thing there while I’m gone; I won’t be needing it.’ It’s a very odd experience – the body is there, but the person has gone. No one would say, ‘I am a body’; we say, ‘I have a body’. So what, therefore, is the ‘I’? The ‘I’ or perhaps ‘me’ has just stepped into the other room. It is a strange feeling, and I can’t describe it in any other way. Another thing that is strange is that the body left behind looks smaller, quite a lot smaller, than the living person. The face looks the same, but calm and relaxed, wrinkles and worry lines are smoothed, and a feeling of serenity pervades the entire room. But the person, the ‘I’, has gone.

It also greatly helps the process of mourning to see the body after death, and preferably to assist in the laying out. Nurses used to do the job when I was young girl, and we always asked the relatives if they wanted to help. Nurses don’t do it any more, but anyone can ask the morticians if they can assist, and they will not be refused, even though it would be unusual these days. Respectful laying-out is all part of the ritual to which a dead person is entitled. Handling a dead body is not a repugnant or frightening experience and, somehow, it helps to accept the fact that the soul of that person has gone if you treat the body with reverence and respect before it is finally disposed of by cremation or burial.

The husband of one of my dearest friends died in hospital of lung cancer, but she was with him most of the time in the last few weeks. She told me, ‘I was with him, and I could see that he was going to die, so I pulled the curtains round and lay on the bed beside him. I took him in my arms (he weighed almost nothing, he was so thin) and whispered to him and kissed him. He knew I was there. Then he just stopped breathing, but I didn’t move. I stayed there with him until he was quite cold. Then I got up and went to one of the nurses and told them that he had gone. The nurse came to check, and touched him.

‘“But he’s quite cold,” she said. “When did he die?”

‘“It was at half past two – I know because I looked at my watch.”

‘“But you should have come and called one of the staff; it’s nearly four o’clock now,” the nurse said.

‘“No, I wanted to be alone with him, quietly, lovingly, giving him time for his soul to leave his body.”

‘“This is most unusual,” remarked the nurse, and gave me a very funny look. But I didn’t care what anyone thought. I knew that he was safely on his way to wherever we go after we die, and I left the hospital, happy.’

Counsellors tell me that, increasingly, they encounter guilt associated with grief in bereavement. This is often because most people die in hospitals and not at home, and those left behind feel they have let the loved one down. They feel a sense of shame that he or she died alone, in the care of strangers. In my own life, I know that I still feel guilty, after thirty years, that my poor mother died alone, even though I also know that I was forcibly prevented by a couple of strong orderlies from entering the resuscitation room in which she died. In contrast, in 1996, my mother-in-law died at home in her daughter’s arms, and she described this as a beautiful, peaceful death. My sister-in-law was very close to her mother, but her bereavement has been eased by the knowledge that she did her duty, with love, right to the end. When talking about it, she repeatedly uses the word ‘beautiful’.

Many hospitals, and all hospices, now try to offer support to enable people to die at home. Support for the relatives, I mean, because it is not always easy, especially if the last stages of illness are prolonged. To be able to die at home is what most people want and, if it is possible, close relatives want it also. There have been many attempts to reverse the national trend towards a hospitalised death in recent years, such as the National End of Life Care Programme, the Liverpool Care Pathway, the Gold Standard for the Care of the Dying. Every hospital trust now has such a policy in place.

Charles, an old friend of mine, died at home in December 2005. His wife, Dorothy, was with him.

Talking with a widow shortly after her husband’s death can be a moving experience. There is no pretence, no effort to make an impression, just the loss and the depth of memories. Sentences are broken, disjointed, started and not finished. Thoughts are random. I will use Dorothy’s own words as I wrote them down:

‘He had prostate cancer twelve years ago, but recovered, and was active till nearly the end … but in July I could see that he was going down in health … he had no pain … it was a big effort for him to do anything … no pain … just weariness … he didn’t realise at the time that he was dying … the pain only started on Sunday … perhaps the cancer had come back … I don’t know … the Macmillan nurses came and he had morphine patches… slow release, you know … very good, very effective … on Thursday he was worse, and he said “I think I am dying” … I said, “Don’t worry, I am with you and will stay with you” … but on Friday he was bright and breezy … until the last day he went to the lavatory by himself, with a Zimmer frame, you know … and he shaved himself… his hand was steady … the weather was beautiful, really beautiful… he went to the window and looked at the sun on the garden and said, “The world has never seemed more beautiful … I want to take a photograph, and you can remember our last days” … I fetched his camera, and he took five pictures… I have them here … they are beautiful … then he went back to bed … he never got up again … he knew he was dying … he had said many times, “If I have to go into hospital I will find a way of killing myself” … I had already promised him that he would not, because I would look after him … the doctor came that day and said he would probably live another two or three weeks but I said no, he is dying … I can see it in his eyes … Friday night he wanted no supper, and he wouldn’t drink, either … it was a terrible struggle to get him to take even a few sips of water … I could see by his eyes he was going, and I called the children … I have a son, three daughters and six grandchildren … One of them said she would stay with him during the night, whilst I got some sleep … at three o’clock she woke me up and said, “He is dying, you are right, his breathing is very slow, he is going” … I held him, saying over and over again, “Go in peace, don’t worry, you are safe, go in peace” … I kept saying these things all the time … he heard me and understood … he knew he was dying … his breathing was getting slower … slowly, slowly, he went away … After that I didn’t leave him … he was not conscious, but I kept saying, “Go in peace, my love, don’t worry, everything is all right, go in peace” … and slowly, slowly, he went away … and his breathing stopped at eleven thirty in the morning … it was a beautiful day, the sun was streaming through the window … it was a beautiful death, too … we laid him out… a day or two later I found a note in the drawer of the cupboard beside his bed … it read, “I hope the love I have for you will linger on and support you through the last years which I had so longed to share with you …” (She showed me the note, written in spindly, shaking handwriting.) … he must have written that for me a few days before he died … so you see, he knew he was dying … we were married fifty-two years … it was a perfect ending … I am not sad … lonely, yes, but not sad.’

Then Dorothy told me that one of her daughters arrived with her son, a boy of thirteen, after the death had occurred. The boy said, ‘I want to go into the bedroom to be with Grandfather for a while. Don’t come in, any of you. I just want to be by myself, alone with him.’ He shut the door, and ten minutes later, quietly and solemnly, came out. But he never said a word about his thoughts and feelings.

That boy showed a maturity and wisdom beyond his years. He faced up to death in the only way that is meaningful – by being close to it. It was an act of love, but also an act of sound common sense, which some instinct told him was necessary. He voluntarily drew close to death, and was not afraid, an experience that will stay with him as he grows and matures.

The last words of the last monastic office of the day are, ‘Lord, grant us a quiet night and a perfect end.’ It is something that we can all pray for, but it is something that we can in no way command, because, at the end we are entirely dependent on the love and goodness of others.

The turning point in many lives is bereavement. Many have channelled their grief into activities for public benefit, and this has helped them transform bad into good. For example: Philip Lawrence, headmaster, was murdered outside his school in 1995, while trying to defend one of his pupils from an attack by a gang from another school. His widow set up an award scheme for good citizenship by young people, and works towards this aim.

In 1863, after her four-year-old daughter fell downstairs and broke her neck, Josephine Butler started working with young girls dragged into prostitution, and her lifelong work led to the repeal of the Contagious Diseases Act in 1886. There have been many examples of courageous and life-changing activities of lasting value inspired by the trauma of bereavement.

Facing death induces us to see life through new eyes; our perspective is altered, sometimes profoundly. Most of us live a headlong existence, so we are too busy to question the meaning of life. Suddenly all is changed, all our values are open to question and doubt. Even those who are non-believers begin to search for answers to questions like, ‘What is the meaning of life?’ ‘Why are we here?’ ‘What is life?’ ‘What is death?’ Bereavement leads some of us to think that there must be more to life than that which is concrete and visible, and we find there is a larger, deeper purpose than we had ever suspected. For some, asking these questions, even though there can be no positive answers, can transform their whole way of living.

 

1965

STROKE

 

Mrs Doherty’s life, for many years, had been perfect, she told all her friends and neighbours. ‘Who could ask for more at my age? I’m in good health, I am independent, I am always busy, but can go on holiday whenever I want. Above all, I see my grandchildren all the time. I miss my dear husband very much, but Jamie has been very good to me since his father died.’

James and Tessa Doherty had three children aged between six and sixteen at the time of this story. They had a large house and garden, and when Jamie’s mother was widowed, they suggested she should come and live with them; but Mrs Doherty valued her independence and did not want to relinquish it. However, a few years later, the house adjoining the bottom of their garden came on to the market and Jamie suggested that they should buy it for his mother. He pointed out that she would have complete privacy and independence, but also be close to her family as she grew older. Mrs Doherty inspected the house, and hesitated. She loved the home she had shared with her husband for forty years, in which they had brought up three children, but she knew that it was too big for one person; she was getting older and would have to move at some stage. The children ran around the empty house with her, full of excitement. ‘You’ll be coming to live near us, Granny. Lovely!’

‘I’m not so sure,’ she replied cautiously. ‘Let me think about it.’

‘Please,’ they chorused. ‘Please, Granny’

‘Don’t pressure me,’ she said.

What tipped the balance of her indecision was the remark of one of the boys:

‘Daddy can cut a hole in the fence, and make a gate, then we can come and see you whenever we want to.’

That did it. Any woman would have been foolish to refuse. In due course her large house was sold, the new one bought, and the move accomplished. It was total success from every point of view. She had a small but comfortable home, a small garden which she valued, and complete independence. Jamie duly removed a section of fence between the two properties, and a gate was installed, which was always left open. Not only the children, but the dog, ran freely from one house to the other.

Mothers-in-law can frequently be a pain to their daughters-in-law. But Tessa had no such complaint. In fact, she valued her mother-in-law’s proximity, help and company. She was expecting her fourth baby and was feeling more tired than she had in the other pregnancies. The three children, all under ten, were a handful. The summer holidays came, and Tessa was in the last weeks of pregnancy; it was hot, and half the time she was exhausted. The fact that she could send the children down the garden to Granny was a great relief to her. ‘I don’t know how I would manage without you,’ she said. But what she valued most, she realised, was the fact that her mother-in-law never criticised and never interfered. She was helpful, but neither demanding nor domineering. Jamie was delighted. After all, the whole idea had been his in the first place. He congratulated himself on a good plan well executed.

The eldest sibling in the Doherty family, Priscilla, was a successful accountant who lived in Durham with her husband and children. She maintained a good relationship with Jamie, although they did not see each other all that often. Their sister, Maggie, was a freelance journalist for women’s magazines, and a writer of romantic short stories. She had struggled to hit the big time, but had never quite managed it. She was unmarried, but had had a succession of men, each of whom she maintained she loved, and whom her mother hoped would prove to be ‘Mr Right’. But something always happened, and the relationship broke down.

Maggie loved her mother and her brother and sister deeply. They were her anchor in life. She also loved her nephew and nieces as if they were her own and she was a great favourite with all of them, because she was fun, she was lively, and she was full of bright ideas about interesting things to do and places to go to. They loved listening to her stories, and boasted to their school friends about their auntie who was a writer. When she was ‘between jobs’ she always went to stay with Jamie or Priscilla and enjoyed their family life. It reminded her of her own childhood.

Maggie had been her father’s favourite, and she missed him dreadfully. There was an ache in her heart that would not go away, and she knew that he had been the man of her life, and that there would probably be no one to replace him. ‘But at least I’ve got my brother and sister, and Mummy.’ she thought (though she was over forty she still clung to the childhood ‘Mummy’). And when the brittle existence of a freelancer overwhelmed her, she turned to her mother for comfort. She had been deeply unhappy when the old house was sold. With it, she felt, were sold all her associations with the past.

The Women’s Institute does not immediately conjure up pictures of fast and furious living. But it is not everyone who wants a frenetic lifestyle, and certainly not Mrs Doherty. ‘I leave that to the young,’ she would say, as she watched her sixteen-year-old granddaughter spend the entire day beautifying herself to go out with her boyfriend to a party. ‘The party doesn’t start until ten o’clock – it won’t end until the small hours of the morning. Bliss!’ sighed the girl.

‘You enjoy yourself, dear. I’ve got cakes to make for the WI jumble sale in the church hall this afternoon and I must get on.’

‘Boring,’ said her granddaughter with a pitying sigh. ‘Poor Granny!’ and she flitted off.

‘Boring? Not a bit of it,’ thought Mrs Doherty, as she sieved the flour and rubbed in the butter. Her life was as full and rich as the cake she was making. Each week she spent an afternoon at the local hospice helping with the mobile library; an afternoon at the hostel for battered women, listening to horrifying stories of violence and abuse; a morning at the primary school helping the slow readers group. She was the backbone of the flower arranging ladies at the church; second contralto in the local choir; a reader to the blind; a collector for Christian Aid; and a tea lady for the local cricket club, not to mention a full-time grandmother to four lively children, the eldest of whom had just informed her that her life was boring.

The local branch of the WI went from strength to strength when Mrs Doherty took over the chair. She threw herself into the task and, with real flair, organised the members into doing things they had never imagined, such as a sponsored cycle ride for grandmothers, a visit to a shipbuilders, a trip in an air balloon. Day trips to cathedrals and stately homes are old hat, she thought, so what about an outing to a metal foundry, an RAF base, a lifeboat station? For three years the Women’s Institute fizzed under Mrs Doherty’s competent guidance.

The ladies were enjoying a guided tour through the sewers of London. They had to wear special clothing, boots and hats. After an explanation of the safety precautions, with some trepidation they set off. The guide related the history of the sewers, how raw sewage had been dumped directly into the Thames until the mid-Victorian era, when London was awash with effluvia. The fear of cholera breeding in stagnant cesspits was very real.

One of the ladies muttered, ‘I think I’m going to be sick.’

The guide was unsympathetic. ‘It’s the methane gas,’ he explained. ‘It’s quite a pleasant smell when you get used to it.’

The group continued on their way, the guide telling them about Bazalgette and his visionary ideas for the construction of a new sewage system for London. He was describing the struggle the engineer had to get his plans approved, when Mrs Doherty muttered, ‘I feel funny,’ and leaned heavily on the woman beside her.

‘It’s only the methane,’ called the guide. ‘Please try to keep up at the back there. We don’t want anyone to get lost.’ Mrs Doherty couldn’t keep up. She leaned more heavily. Two women tried to support her, but couldn’t. Her voice was slurred. ‘I’m so sorry. I don’t know what’s happened. I feel fu … fu … fu …’ and she slid to the ground.

Mrs Doherty had suffered a stroke.

The difficulty of getting the unconscious woman out of the sewer was considerable. Two ladies tried to carry her, but the slippery surface of the tunnel made it impossible. Others said they would go to get help, but the guide assured them they would get lost if they tried. With great courage and strength, he hoisted Mrs Doherty across his shoulders and carried her the half mile to the exit shaft. One of the ladies was supporting her head, and several times the guide slipped and nearly went over, but not quite, and he did not drop Mrs Doherty. ‘It was a nightmare,’ the ladies said afterwards. The journey, the bumping, and the length of time taken probably added to the injury sustained after the initial stroke.

 

A DANGEROUS SUBJECT

 

‘Stroke’ is a good word. It is much better than medical words. There is no warning, no time to prepare when a stroke brings you down. Strokes can vary in severity from mild and transient, to catastrophic with permanent injury. They are caused by one of three things: thrombosis, embolism or haemorrhage, in order of severity.

Thrombosis is caused by the hardening and narrowing of the cerebral arteries, which can give rise to both chronic and acute changes in the oxygen supply to the brain. Blockages in the tiny cerebral arteries are associated with a slow, progressive disturbance of cerebral functions, punctuated at intervals by seizures or attacks, called transient ischaemic attacks (TIA) or mini-strokes. Stroke due to thrombosis is less common, nowadays, because of the early diagnosis of high blood pressure and hardened arteries, and drug treatments available to rectify these conditions.

An embolus is something floating freely in the circulatory system. Several things such as air or fat or necrotic material from a tumour are possible emboli, but the most common is a blood clot. Our blood gets thicker, and flows more sluggishly, with an irregular pulse, as we grow older, and clots are liable to form. When an embolus reaches an artery too narrow to allow it to pass, it becomes lodged, and the tissue beyond it is no longer fed with oxygen and will die. These blockages can occur in any part of the body, but if one of the cerebral arteries is blocked, the result will be a stroke. The severity can be mild or severe, and this will depend on the position in the brain and the size of the area affected. The incidence of a stroke due to an embolus has been greatly reduced by preventive measures – drugs such as Warfarin, which thin the blood, and those which reduce high blood pressure.

A stroke caused by haemorrhage cannot be foreseen and, therefore, cannot be prevented. It is due to the rupture of a weak spot in a cerebral artery. We all have weak patches in our blood vessels and they normally cause no trouble. But just as the strength of a chain is in its weakest link, so it is with blood vessels. Under tension, the weakest link will snap. In certain circumstances, the weak spot of an artery will burst and blood will escape into the surrounding area of the body. This can occur in any artery, in any part of the body, and the site of the haemorrhage will determine the severity of the damage. If it ruptures in the cranium, it causes a stroke. It can occur at any age and is quite unpredictable.

I was a ward sister at the Elizabeth Garrett Anderson Hospital for Women in London when Mrs Doherty was admitted. She was in a deep coma, and her skin was colourless and cold, although covered with perspiration. Her temperature, blood pressure, pulse and respiration were subnormal. We did not think she would live for long – such a severe stroke was usually terminal. The houseman who attended whilst we admitted the patient, said much the same as I had been thinking: ‘The kindest thing would be to let her die quietly. However, I must do a lumbar puncture to diagnose the cause.’ This she did, revealing abundant blood in the spinal fluid, which was diagnostic of a cerebral haemorrhage.

We contacted the next of kin. Jamie left work at once and came to the hospital, but Priscilla was in Durham, and Maggie was on an assignment. The consultant surgeon, Miss Jenner, explained to Jamie that the prognosis was uncertain, but that a craniotomy could be performed to open the skull and suck out the blood and fluids that had collected and would be causing pressure inside the cranium. It might also be possible, she said, to locate the origin of the bleeding and tie it off.

Jamie looked alarmed, and Miss Jenner explained that opening the cranium is not all that difficult, and trephining the skull had been performed since pre-Roman days, and that sucking out the blood is not a lengthy business and would certainly relieve pressure on the brain, which was essential if Mrs Doherty was to stand any chance of recovery. (Miss Jenner was a general surgeon. What she suggested was not brain surgery, for which a specialist brain surgeon would have been required. Also, a general surgeon in the 1960s had a far wider role than today.)

Jamie was asked to give consent for the operation. He hesitated. ‘I am not sure that she would want it. She wouldn’t want to be debilitated, I am quite sure of that. She is eighty-two, she has had a full and active life, and to go, while she is still getting about and enjoying herself, is what she would want.’

His words raised an element of doubt in Miss Jenner’s mind. ‘This is always a difficult moment, probably the hardest you will ever have to face. To treat or not to treat. To leave well alone, or to intervene. But I assure you, that if we do not operate quickly your mother will die later today.’

Poor Jamie. What a situation! And the decision was on his shoulders. His instinct said ‘leave well alone’, but he couldn’t bring himself to say it. He needed help. ‘I must speak to my sister. I will ring her office; please God let her be there.’

He went and telephoned Priscilla, who was at her desk. He explained what had happened, and what the consultant had said. Priscilla was unequivocal and immediate in her response. ‘She must be operated upon. You must sign the consent form. We cannot morally, or even lawfully, as far as I know, withhold from her the chance to survive.’

Jamie did not hesitate to give his consent for operation.

He remained in the hospital, and spoke again at length to Priscilla, who said that she could not come to London until the work she was engaged in had been concluded. She did not want to pass it to her junior, and, as there was nothing she could usefully do in London, she would remain. Jamie contacted his other sister, who sobbed uncontrollably when she heard the news. ‘Darling Mummy, my poor darling. I’ll come at once.’

The day dragged on, and the hours hung heavily for Jamie. His mother had looked ghastly when he saw her. She had appeared to be dead, but obviously was not, because she was taking in great noisy, sucking breaths, horrible to listen to. At the same time, the competent matter-of-fact attitude of the hospital staff had reassured him. She would be all right; she was a tough old bird, he told himself.

The operation was done under general anaesthetic. The cranium was opened, and blood and serum sucked out, but the source of the bleed could not be found. X-rays were taken from every angle, but were inconclusive. Clinical signs suggested that the bleed was in the left side of the brain, but natural clotting had halted the flow. No further probing would have been appropriate, and so the piece of skull bone was replaced, and the wound sutured. Mrs Doherty was returned to the ward.

We had prepared a side ward to receive her and she was lifted on to the bed. Her breathing was quieter, but very slow, and in other ways she looked worse than before, because her head had been shaved. The bandages on her skull were deeply bloodstained, because there are numerous small vessels on the scalp, and they bleed profusely. Two draining filaments had been left in situ, and were sticking out. She was attached to two drips, one blood, one saline, and a laryngeal airway for continuous oxygen. Frankly, she looked barely human.

Nurses are accustomed to these things, and we were neither surprised nor alarmed, but Jamie was still in the hospital, and wanted to see his mother. He could not be refused. Miss Jenner had already told him of the operative procedures, and said that when the nurses had made his mother comfortable he could be admitted.

I went to the visitor’s room myself, because I wanted to prepare him. I knew that the sight of a patient after cranial surgery can be a terrible shock. We were talking together, when suddenly the door flew open and a woman burst in, her hair dishevelled, her eyes swollen and her face red and blotchy.

‘Where’s Mummy?’ she cried, ‘I must see her. She needs me.’

Jamie introduced his sister Maggie.

‘It’s been a terrible journey. I’ve had four changes of train, and nothing to eat all day – but I’ve brought these flowers for her. I know she likes roses; they are her favourite flower. She will love them …’ She started to cry, and pulled out a wet handkerchief.

I told her that her mother had returned from the operating theatre only an hour earlier.

‘An operation? You didn’t tell me about an operation, Jamie,’ she said accusingly. ‘What operation?’

I said that it had been necessary to open her mother’s skull to suck out the blood.

‘Blood! You opened her skull! Oooh, Mummy!’

Jamie took hold of his sister and explained, quietly and sensibly, what had been done. He and I exchanged glances and I could read his thoughts – was Maggie in any fit state to see her mother? But we could not refuse her.

We went to the side ward. I told Maggie that we must be quiet, and not disturb her mother. We entered the ward and stood silently by the bed for a moment or two. Then Maggie said, ‘But where’s Mummy?’

What a dreadful moment for any ward sister. I bit my lip and said softly, ‘Here. This is your mother.’

‘No, it’s not. Do you think I don’t know my own mother? This must be the wrong room. Where is she?’

‘No. It’s not the wrong room. This is your mother.’

I could feel the panic rising in the woman beside me.

‘But it can’t be … that’s not Mummy!’ Her voice was trembling. ‘I don’t believe you. You’re lying. You must be!’ With every word there was a rise in decibels. Jamie took hold of her.

‘Maggie, come away. This is no place for you. Come with me.’

Firmly he led her out of the side ward. Hysterical screams could be heard echoing down the corridor.

Brother and sister left the hospital. Jamie telephoned at 10 p.m., and the night sister told him that his mother’s condition was stable, and that he should ring in the morning.

Jamie came to see his mother each day. He did not stay for long, because there was nothing he could do. His mother was unconscious, but there was no deterioration in her condition. Maggie did not come to the hospital, but her telephone calls were so frequent that I had to instruct the main switchboard to limit her calls to the ward to two a day.

I spoke to Priscilla in Durham, on the telephone. Her voice had a very clipped accent, pleasant to listen to, but somewhat intimidating. She sounded like the sort of woman who would assume she was in the right and brook no contradiction. There was not a lot that I could say, beyond what she had already heard from Jamie, that their mother’s condition was stable. She said she would remain in Durham.

About a week later, Mrs Doherty showed signs of regaining consciousness, first by the twitching of the legs and then restlessness which became extreme. Her pupils, which had been tightly closed, responded to light. Grunting was heard, and slurred attempts at speech. Jamie sat by the bedside for some time, holding her hand, and she obviously knew who he was and took comfort from his presence. Maggie came, but she cried so much it would have been better if she had not come at all.

Mrs Doherty gained consciousness and began to understand what was going on around her. She responded well to questions and instructions from the staff, such as ‘Can you raise your left arm? Can you raise your forefinger?’, but she was severely hemiplegic. She could not move the right side of her body at all, her right eye and her mouth and tongue slumped heavily to the right, and she could not speak. Several times she tried, but the sound was quite incomprehensible. Tears gathered in her eyes as she desperately tried to make herself understood.

Nursing her was difficult – but it always is with a patient in such a condition – and took a great deal of our time. We moved her every two hours, repositioning her limbs and treating pressure areas. We removed the naso-gastric tube, cleaned her mouth, and raised her into a semi-recumbent posture. We spoon-fed her with semi-solid feeds, but she found swallowing difficult, and the food frequently trickled out of her mouth. If any fluid went into her trachea, she started choking, and it had to be sucked out. The physiotherapist came daily, treating the paralysed limbs. The stitches and drainage tubes were removed from her scalp, and we put a little white cap on her head, which made her look more feminine.

Maggie informed her clients that she would be taking a break and would be living in her mother’s house for an indefinite period. She had become reconciled to her mother’s condition, and came in daily, sitting with her for long periods of time, talking to her about her life, her boyfriends, her plans for the future. Should she give up freelancing? But what would she do instead? Her mother could make no response.

Maggie chatted on, and she discovered what many people learn – that a hemiplegic, speechless person loves to be talked to as though nothing is wrong, and no verbal response is expected. Maggie talked about her father, and days in the old house when they were all little, about the tree house in the garden, and picnics in the summer by the stream, and ‘Do you remember, Mummy, when we thought a bull was coming for us, but it was only a cow which had strayed?’ She chatted endlessly, and the happiness it gave to both of them was beyond measure.

One day she said: ‘Priscilla is coming tomorrow to see you. She won’t stay with Jamie or me – she insists on staying in a hotel. I’m scared of Priscilla, Mummy, aren’t you? She’s so cold and stiff and correct and I’m sure she disapproves of me. But every time she looks at me in that way I think of when she was a little girl and we went to a birthday party and she put on roller skates and was wobbling and slipping all over the place. She wet her knickers, and when we sat down for tea she left a big wet patch on the cushion of the lady’s nice chair. That makes me feel better and I think, “Well, you weren’t always perfect, Miss Perfect”.’

They both laughed, and saliva trickled from the side of her mother’s mouth. Maggie tenderly wiped it away, and kissed her mother. She whispered, ‘We’ve had such fun, haven’t we, Mummy darling, and we’ll have fun again when you come out of hospital. I’ll always be there to look after you.’

Priscilla arrived the following day. She was tall, slim and dignified. Her features were composed as though nothing could ruffle her, and her nostrils were very close and narrow, which made her appear to be sniffing slightly all the time, an effect intensified when she pursed her lips and raised her eyebrows.

In spite of her apparent composure, Priscilla was very tense and ill at ease. A hospital was quite outside her experience; she was no longer in control. Before she had even seen her mother, she asked to speak with the consultant. I said that Miss Jenner was in theatre all morning, and had a clinic in the afternoon, and that I did not expect to see her on the ward that day. Her nostrils contracted and she said in a clipped, precise voice, ‘Please inform Miss Jenner that I am residing in London for a limited period and that I request an interview at her earliest convenience.’ I said that I would do so, and did she wish to see her mother? She replied, ‘Yes, of course.’

I led her to the side ward. Two nurses were there. They had washed Mrs Doherty and changed her nightie and managed to get her out of bed to sit her in a chair. One of them was on her knees on the floor, adjusting Mrs Doherty’s feet to rest on a footstool; the other was tying a bib round her neck to catch the saliva as and when it dripped. Her body slumped to the right, in spite of the pillows they had placed to try to keep her upright, and she looked up as best she could by moving her head and raising her left eye a fraction. She obviously recognised her daughter, because a gurgling sound came from her throat and she moved her left arm in greeting.

Priscilla did not say a word. I opened the window a little, and one of the nurses looked at me questioningly. Should they attempt to give Mrs Doherty her morning drink? We understood each other without a word being said – this woman was undoubtedly intimidating, and would probably be critical. To attempt to give a drink to her mother, even from a feeding cup, would probably be repellent to her. No morning drink. Not yet, anyway.

One of the nurses placed a chair beside Mrs Doherty. I asked Priscilla if she would like a cup of coffee, but she shook her head. She still had not spoken. We left the room and shut the door.

Five minutes later she came out and asked to see me. The confidence, the assumption of superiority, had been knocked out of her.

‘This is a bad business, Sister.’

‘Your mother has had a severe stroke, which is always distressing to see.’

‘I was not aware it would be as bad as this.’

I refrained from saying that she did not look nearly as bad as she had a fortnight earlier. Instead, I said, ‘Your mother is making progress as well as can be expected.’

She turned suddenly, almost angrily. ‘But she cannot speak!’

‘No.’

‘She can only make gurgling noises.’

‘The side of her brain controlling speech has been affected.’

‘Well, what are you going to do about it?’ she demanded.

‘There is very little we can do, apart from physiotherapy, to encourage the healing powers of nature.’

‘Healing powers of nature! Is that all you are doing? There must be some drugs she can have. What about all the miracles of modern medicine we hear so much about?’

I thought how the miracles of modern medicine can prevent someone dying from a stroke, but cannot restore the loss of speech nor the loss of muscular control that are its legacy.

‘I must see the consultant. I must discuss what can be done about this distressing situation.’

I was explaining again that Miss Jenner was not expected on the ward until the following day, when I heard a familiar voice in the corridor. ‘Excuse me a moment,’ I said, and went out. It was Miss Jenner.

‘Hello, Sister. We closed theatre earlier than expected, so I thought I would just pop down to see how Miss Patterson is getting on. Perhaps that drain can come out. And if you can find a cup of coffee, that would be nice.’

I told her that Priscilla, Mrs Doherty’s eldest daughter, was in the office and wanted to speak to her.

‘I’ll see Miss Patterson first, then have a chat with her.’

A little later, before we parted for lunch, I caught up with Miss Jenner, and she told me what Priscilla had said. ‘She seems to think that we can restore her mother’s speech and movement by drugs. It astonishes me, the ignorance of the most fundamental medical facts that intelligent, well-informed people sometimes display.’

‘Very true,’ I laughed.

‘She seems to think that because we have not already done so, we are being negligent, and have missed an obvious point.’ She shrugged her shoulders despairingly. ‘I don’t know what she thinks we should be doing, but she is demanding another medical opinion.’

‘And will you get one?’

‘Well, I shall have to get a geriatrician’s assessment for her mother. She can’t stay here indefinitely. This is an acute surgical ward. She will have to go to the geriatric ward. That will give her daughter the second opinion she requires.’

Miss Jenner sighed deeply. She was a lady in her fifties, about twenty years older than I was.

‘It used to be so much easier in the old days. When I was a medical student it was not expected that anyone would survive a massive cerebral haemorrhage. All the medical textbooks, all the lecturers, informed us that death would result within a few hours, or at most a few days.’

‘I doubt if anyone would say that now.’

‘Oh no!’ Miss Jenner said emphatically. ‘No one would dare to say such a thing. They would be in serious trouble. It is a very dangerous subject.’

Miss Jenner left, and I sat very still at my desk, my mind going back about twelve years. Miss Jenner had used exactly the same words that Matron Aldwinkle had used when I was a student nurse – ‘This is a dangerous subject.’

 

A FAMILY DIVIDED

 

The geriatrician came to assess Mrs Doherty and advised a rehabilitation centre. Miss Jenner said that the patient could not remain for long on the acute ward, and asked if a bed could be found on the geriatric ward until rehabilitation. It was not easy – there were too many patients and too few beds available. The consultants both knew the difficulties. ‘We’ll ask the medics. They have more of a turnover than we do.’ The medical registrar came to see Mrs Doherty and said that a patient with colitis would be discharged at the end of the week and a bed could be available.

Miss Jenner saw Priscilla and told her that two specialist opinions had been sought and that her mother would be transferred to a medical ward for treatment for the aftermath of a stroke. Following on from this, her mother would go to a rehabilitation centre. The woman seemed satisfied with this and said, ‘I will reside in London until next week, and then I must return to Durham.’ Then she said, very formally: ‘On behalf of my family I would like to thank you, Miss Jenner, for saving my mother’s life. You obviously acted with great skill.’

She turned to leave and had to pass her mother’s door. She put her hand on the handle, and paused. One could almost feel the indecision going on in her mind, her sense of duty telling her she should go in, yet opposing that, her fear of seeing her mother, of not knowing what to do or say. She half turned the handle, then released it, and started to walk away. At that moment Maggie came round the corner with an armful of flowers.

‘Priscilla! You old stick! You didn’t tell us you were coming in this morning. How is she?’

Priscilla hesitated before answering. She looked exceedingly discomfited, and then said truthfully, ‘There is no change.’

‘But is she awake? Was she glad to see you?’

Priscilla could not answer. Her nostrils closed to narrow slits and her shoulders tensed.

‘Priscilla!’ Maggie was furious. ‘You are impossible. You came here to see the doctor, not to see Mummy. How could you?’

‘Don’t make a scene here in the corridor, with everyone listening.’

‘I don’t care if the whole world can hear me! Dear Mummy, lying there ill, and you don’t want to see her.’

‘Stop this behaviour. We will go in together.’

She opened the door, and they entered. The staff nurse and I looked at each other.

‘Wow, that was a near thing!’ she said. ‘We don’t want them fighting here in the corridor. You see it all in this life, don’t you, Sister?’

I could only agree.

We had a busy morning. There were five cases for theatre. That meant preps and pre-meds, calling the porters, arranging for nurses to escort patients to theatre and, afterwards, back to the ward, post-ops to be received and cared for, and student nurses to be taught the details of post-operative nursing. I was thankful to have a very good staff nurse, who was highly experienced and loved the drama and excitement of an acute surgical ward. She was indispensable on such a morning.

We had almost forgotten about Mrs Doherty when suddenly Maggie came screaming out of the side ward. ‘Sister, Sister, come quickly. Something’s happened.’

The staff nurse was there before me. She said, as I entered, ‘I think it’s another stroke. I’ve called the doctor, but of course our team is in theatre. One of the medics will come.’

One look was enough to confirm Staffs assessment. Mrs Doherty had slithered from her chair, and was slumped on the floor. Her eyes were wide open, but her pupils had receded upwards, and only the whites were showing. Her mouth, hanging to the right side, was open, and copious frothy fluid poured from it.

Maggie was sobbing and holding her mother in her arms. Priscilla was leaning against the wall, her face as white as a sheet. She was struggling to control her breathing, and her eyes were staring horrified at her mother.

‘My God, we are going to have two strokes on our hands, if we are not careful,’ I thought, and went over to her.

‘Would you please go to the office and ring your brother, Jamie? Tell him to come, because this looks serious.’ Giving someone in a state of shock a job to do is usually the best way of dealing with the situation.

I whispered to a nurse, ‘Go and ask the ward maid to make some strong coffee for that lady. She’s going to need it. Then prepare a lumbar puncture trolley.’

Two porters were just entering the ward to take the next patient to theatre. It was fortuitous. I called them in to help us lift Mrs Doherty on to the bed and shortly afterwards the medical registrar arrived. She said, ‘We must sedate to stop these muscular spasms, then I will do a lumbar puncture.’ I said that the trolley was ready. We turned the patient, and doctor inserted the long needle between the third and fourth lumbar vertebrae. The fluid draining out was heavily bloodstained. ‘We can assume another haemorrhage. This patient belongs to your team, not ours. She must be seen by Miss Jenner.’

Maggie was in the room – she refused to leave her mother – and asked how long that would be. I said that Miss Jenner was in theatre and the list was due to finish at 1 p.m. It was then 12 noon. Mrs Doherty was deeply unconscious, breathing noisily and very slowly. Her pulse and blood pressure were very low. I thought, This is it. She won’t survive this one, and said to Maggie, ‘We must keep your mother very quiet. I am sure you will want to stay with her.’ She nodded tearfully.

In the office, Priscilla was looking a bit better. She said that her brother Jamie was on his way and that they would see Miss Jenner together.

Jamie arrived at about 12.30. Theatre closed slightly ahead of time, and Miss Jenner came straight to the ward, still in her theatre clothes. I accompanied her into Mrs Doherty’s room and Jamie and Priscilla joined us.

Miss Jenner examined her patient and said exactly what the registrar had said: ‘A second cerebral haemorrhage has occurred.’ She said no more. Maggie sat by the window, crying quietly. Priscilla stood by the door, looking tense. Jamie stared at them both, and said:

‘I don’t think any further treatment should be attempted.’

Maggie sobbed quietly. ‘But she will die, Jamie,’ she said in a tiny voice.

‘She will, and it will be for the best.’

‘How can you say that? For the best! What a wicked thing to say. Our darling Mummy!’ Her voice was rising.

The accusation stung. ‘I’m not wicked. I’m being realistic.’

‘I hate you. Realistic! At such a time!’

‘Don’t create another scene, Maggie,’ interrupted Priscilla.

‘You cold fish,’ she shouted. ‘I suppose you want Mummy to die also – then you won’t have to come and see her. Is that it?’

‘I decline to answer. You are getting hysterical again.’

‘I’d rather be hysterical than cold and heartless like you two.’

Miss Jenner and I looked at one another. This was not the time or the place for a family row. Miss Jenner turned to Maggie and said gently: ‘Your brother is probably right. The time has come to let go, and allow your mother to die in peace.’

Maggie looked up with unspeakable anguish.

‘Let go? She is all I have. She was getting on so well – almost talking to me. I was beginning to understand what she was saying, and she understood every word I said.’

Maggie sobbed quietly into a wet handkerchief, and Jamie gave her his, and put his arm around her. No one spoke for a moment, and between sobs she continued, ‘I’ve been getting the downstairs room ready for her – it’s all so pretty, just as she would want it.’ She looked up at Miss Jenner. ‘Is there nothing you can do?’

Miss Jenner did not answer. The silence in the room was tense. The sound of stertorous breathing from Mrs Doherty seemed unusually loud.

Then Priscilla spoke. ‘Is there anything you can do to relieve my mother’s condition, Miss Jenner?’ Her voice was precise, and demanded an answer.

‘I could do another cranial exploration,’ she said quietly.

‘Then it must be done.’

‘No,’ said Jamie, ‘I won’t allow it. She has gone through enough already.’

‘It must be done,’ Priscilla retorted.

‘Why? In God’s name, why?’

‘Because it can be done,’ Priscilla said.

‘I do not advise it,’ said Miss Jenner. ‘I cannot be confident that she will survive a second operation.’

‘There you are, Priscilla,’ Jamie said, ‘Medical advice is against operation.’

Priscilla ignored him, and spoke to Miss Jenner.

‘Will she survive without operation?’

‘It is unlikely. In fact, I must answer no, she will not.’

‘When is her demise likely to occur?’

‘That is more difficult to predict.’

‘Days? Weeks?’

‘Oh no, not weeks. Maybe later today, or during the night.’

Maggie screamed, ‘No, oh no, no, please !’

‘So the balance in favour of survival is to operate?’

‘Yes, it is.’

‘Then it must be done.’

Jamie confronted his elder sister. ‘I don’t agree, and I will not give my consent to operation.’

‘Your consent will not be necessary. I will give mine.’

Maggie jumped up, her tears stopped, her face hopeful.

‘Oh Priscilla, you’re wonderful. Can it be done, Miss Jenner? Can you save Mummy?’

‘I cannot guarantee it.’

‘But you can try, can’t you? And I will look after her when she leaves hospital. I want to look after her.’

Jamie was exasperated. ‘You just want something to fill your empty life.’

‘Don’t be so beastly. You just want her out of the way.’

Miss Jenner interrupted. ‘Please. You can settle your differences elsewhere.’

Jamie looked furious. ‘I don’t want her “out of the way”, as you put it. I just want what is best for her.’

‘And you think it’s best for her to die? You … you

She turned to Miss Jenner. ‘Please, oh please try’

‘I cannot guarantee a successful outcome, and therefore I am reluctant to operate,’ the surgeon said.

‘What is the balance in favour?’ asked Priscilla.

‘I would say about fifty-fifty Not more.’

‘Then it must be attempted.’

‘No,’ said Jamie, ‘It would be going too far. Why are you so keen on a second operation, Priscilla, when it is against medical advice?’

‘I am not “keen”, as you put it. I merely say that if an operation can relieve the pressure on her brain and save our mother’s life, then it must be done. To do nothing, and allow her to die, would show indifference or negligence, which I cannot allow.’

‘Priscilla, you are so sensible. We must do all we can for Mummy.’ Maggie turned to Miss Jenner. ‘Don’t listen to Jamie. He doesn’t understand. We can’t just allow Mummy to die.’

Miss Jenner replied, ‘Your mother is going to die anyway. An operation will only delay death.’

‘That’s what I’ve been trying to say, Maggie, only you won’t listen. And it’s the reason why I don’t think it should be attempted. We must do what’s best for her. I appeal to you, Miss Jenner.’

‘Be quiet, Jamie. Don’t listen to him, Miss Jenner.’ Maggie was sobbing again. ‘Mummy could get better. It’s quite possible. She has been improving every day this week. I have seen it. She can nearly talk – at least, I can understand her, even if you can’t. We must do all we can for her.’

Priscilla spoke again. ‘If a second operation holds any chance of survival, then it must be done. I cannot have it on my conscience that, when my mother was seriously ill, I stood by and did nothing. I am not even sure about the legal rectitude of non-intervention.’

Jamie, tight-lipped, said, ‘I think you are wrong, both of you. It will only impose more suffering on her.’

Priscilla said, stiffly. ‘I am confident the hospital staff will be able to reduce any suffering to the minimum. It is a simple matter: if a life can be saved, it must be saved, and a fifty per cent chance of survival is worth taking. She has been a good mother to us all, and we owe it to her.’

She turned to Miss Jenner and me.

‘I want it recorded that I request a second operation on my mother, to relieve the congestion on her brain. If you will get a consent for operation form, I will sign it now.’

I glanced at Miss Jenner and she nodded her head. I went to the office and returned with the necessary form and filled it in, ready for signature. Miss Jenner did not say a word, but left the room. Priscilla and Maggie signed, Jamie refused to do so.

When I returned to the office, Miss Jenner was sitting with her head in her hands. Poor woman – she had had a full morning in theatre, had another clinic in the afternoon – endless responsibilities – and now this. She looked drained.

‘There is something formidable about that woman. She is relentless in her logic, but she is wrong, in my opinion. Logic is a bad master. She may be right legally, but she is wrong morally and ethically. I’m sure of that.’

‘Her last words sounded like a threat,’ I said.

‘They were.’

‘Can anyone threaten a consultant? Surely a consultant’s opinion must be respected?’

She laughed, pulled off her theatre cap, and ran her fingers through her hair.

‘Not any more. Medicine is changing fast. Professional expertise and experience are no longer enough. Now we have the law breathing down our necks.’

‘That doesn’t sound too promising for medicine.’

‘No it is not. But you heard her words – “if it can be done, it must be done”. I don’t agree – I think it is a question of balance and restraint, but if it came to a court of law, my professional opinion would count for very little.’

‘A court of law?’ I exclaimed in alarm.

‘Perhaps not a civil court, but the BMA have their own tribunals, and they have unlimited power to make or break a doctor’s career.’

‘Surely you don’t think Priscilla would sue you, or anything like that?’

‘No, I don’t, it would be out of character. But her sister might. She is a very emotional woman who is clinging to her mother and won’t let her go. She wouldn’t listen to her brother Jamie, nor to me, because we would not say what she wanted to hear. If her mother dies today or tomorrow, which is possible, Maggie will blame me, and say that the death could have been prevented, but that I refused to operate. It would only require a letter to the BMA suggesting that I have been negligent in my professional duties Her voice trailed off.

And what then?’ I ventured after a minute. I could see she was deep in thought.

‘What then? Suspension on full pay whilst enquiries are made. Endless statements, investigations into my professional competence.’

‘That can’t be in doubt.’

‘I’m not so sure. Past record may count for something, but it is no defence. At a BMA tribunal, how could I stand up and say, “I thought we should let the old lady die”?’

Put like that, it sounded both callous and unprofessional. Miss Jenner laughed bitterly.

And even if I didn’t use those words exactly, you can be sure the press would.’ She heard my exclamation of surprise and indignation. ‘Oh yes! The press would be there all right. The tabloids love that sort of thing. They would drag me through the gutter, given half a chance. I can just see the headlines, “Consultant Surgeon says let the old people die”. I, and the hospital, would be named and shamed.’

Miss Jenner let out a long shuddering sigh.

‘My local paper would make it front-page headlines. They’ve got nothing much else to report – apart from the occasional “flasher” on the common! It would really be big news for them. And that’s where I live, and do my shopping, and take my dog for a walk.’

Her voice was nearly breaking.

‘I hate to think of it all. Even if my decision was vindicated by the BMA, the damage would have been done.’

She looked up, and her face looked ten years older.

‘Against my better judgement, I will have to operate. I have no choice. Instruct Theatre Sister to prepare for a trephine, will you please? And I will speak to the anaesthetist.’

She stood up, looking more resolute.

‘I must go and speak to the relatives first.’

‘What about lunch?’ I said ‘You have had nothing.’

‘There’s no time. I’ll eat later.’

‘You’ll need something inside you. I’ll get the ward maid to prepare a sandwich and coffee for you.’

‘Thanks. That sounds nice. I’ll go and see them now, then have a bite.’

The operation was successful. The bleed was less serious than before, and had been attended to more quickly than the first stroke. A small bleeding point was located and tied off. Free blood and serum were sucked from the cranium, a clot removed, and the patient returned to the ward. Nursing procedures were as before, and Mrs Doherty regained consciousness within three days.

Maggie was overjoyed and spent most of each day with her mother. Before returning to Durham, Priscilla called at the hospital a couple of times and expressed her satisfaction. Jamie also came to see his mother each day. He looked at her paralysed limbs, and listened to her gurgling attempts at speech, and murmured ‘I hope to God this never happens to me.’

Mrs Doherty remained on the ward for three weeks, and then was transferred directly to a rehabilitation centre. For a month she received physiotherapy, ultrasound, passive movement of the limbs, swimming sessions, and many of the exercises that attempt to restore strength to wasted muscle. A speech therapist helped her with jaw and tongue movements, vowel sounds and consonants.

It had been ten weeks since the first stroke and a measure of improvement was undoubtedly seen, so Mrs Doherty returned home with Maggie to care for her.

All went well to begin with. The old lady was obviously pleased to be home, and Maggie was full of enthusiasm and happiness. The children came in to see their Granny, expecting her to be the same, or very nearly. But when they saw an old, old woman, who looked nothing like the grandmother they remembered, slumped in a chair, her face fallen to one side, one eye closed, saliva trickling out of the corner of her drooping mouth, they backed off, afraid. She saw their alarm, and tried to smile and hold out a hand in greeting. But when she tried to say, ‘Hello darlings, I’ve come home,’ it sounded like ‘Ga ga wa wa ga’. The youngest one ran away in terror, and the eldest girl murmured to herself, ‘Oh, how dreadful.’

People paralysed from a stroke are usually fully aware of what is said, and what is going on around them, and Mrs Doherty wept, great tears that she could not wipe away running down her face.

Maggie did her best. But she had completely underestimated the difficulties involved, which, even for a professional nurse, can be daunting. A district nurse came in for four hours a week, but Mrs Doherty required twenty-four-hour nursing every day, and the only person to do it was Maggie. Feeding, drinking, washing, bathing, help with dressing – all had to be attended to. Soiled underwear and bed linen had to be changed frequently, and even though a bathroom and lavatory, specially designed for invalid use, had been built on to the ground floor room, Maggie found that getting her mother on and off the lavatory was a monstrous task. Mrs Doherty tried desperately to help herself, but early one morning, when she’d managed to get out of bed, her Zimmer frame was just a little too far away, and, in trying to reach it, she slipped and fell, and lay on the floor, wet and cold, for several hours.

Another thing Maggie had not expected was the boredom. Each day was the same – a struggle with physical necessities, until Maggie felt she could scream. Although Mrs Doherty’s speech had improved to the point where she could say a few words, she could not carry on a conversation, and her attempts to do so frequently led to tears of frustration. In the end Maggie gave up trying to speak to her mother. In the winter, when the days grew dark and wet, Maggie wondered how much more she could take.

Mrs Doherty made heroic efforts to do things on her own. She was not a woman who wanted to be a burden to her daughter. She did the exercises advised by the physiotherapist, but progress towards mobility was minimal. Had she been twenty years younger, it might have been different, but she was simply too old to build up new muscular strengths. Every little thing was a labour for her to achieve; frequently, she wept uncontrollably.

Jamie came to see his mother each day, but did not stay for long. It was difficult to communicate and conversation was confined to banalities. He could see the strain imposed on Maggie, and though they both thought often of the scene in the hospital, and Miss Jenner’s rejected advice, neither of them ever mentioned it.

One day Jamie said to his sister, ‘You need a holiday. You can’t carry on like this. You’ll crack up.’

Maggie burst into tears. ‘If only I could. But I don’t see how I can leave her.’

‘Tessa and I could take over.’

‘I don’t think you could. She needs someone with her all the time. You have to go to work, and I doubt if Tessa would do all that I do.’

‘Then she’ll have to go into a nursing home for a while. I will make enquiries and arrange something. You must have a break.’

‘That would be wonderful. Thank you, Jamie.’

He could see her depression and was concerned. Everything about her, her clothes, her hair, her face, her nails, was neglected. Even her body language was so unlike the Maggie they had always known.

‘Do you think you’ll ever go back to writing?’

‘Oh, I don’t know. Can’t see it, somehow. I had a letter from one of my magazines today, telling me that they were taking me off their books. That’s bad news.’

Jamie didn’t say anything but arranged for a nursing home to take his mother. It was not easy. because of his mother’s incapacity. Most nursing homes wanted old people who needed no nursing, he discovered. He found one, eventually, who said they would take her for two weeks, providing she was not incontinent. Jamie assured them that she was not, but would require help in getting to a lavatory, or a bedpan. The expense was colossal, but Priscilla agreed to help pay.

Mrs Doherty was terrified when she was told that she was going to a nursing home for a fortnight. She couldn’t express herself but kept saying ‘No, no, no,’ and shaking her head and crying. She managed to formulate the words ‘Let me stay here’, and then added, ‘Please, please, oh please,’ but no one took any notice. When two men came with a special recumbent chair in which to carry her, she resisted with all the puny strength she could muster – but they took her anyway.

The stress of being moved, and the mental agitation, the new surroundings, strangers taking care of her – it was all too much for the old lady, and she went rapidly downhill in the nursing home. She would not eat or drink, she made no effort to move, but lay inert in her bed. Her time, at long last, had come, and Mrs Doherty died five days later.

 

A man

half bent over on the sofa, eyes down, asleep or awake.

An assistant puts a mug of tea in his hand

but he can’t hold it or isn’t ready, she puts it gently

on the sideboard next to him, With the cup shakily

in his hand now (I am watching) he raises it slowly

to his .. . But where to go? The cup goes to his glasses,

almost touches them, then slowly down again, up again,

this time halfway to his mouth. The cup (I am watching)

is on the sideboard again. A biscuit has been put

into his hand. Using both hands shaking, and with

tiny movements he tries (I am watching) to break

the biscuit. With a small piece of it he tries to find

his mouth. He fails and lowers his hand again

very slowly. His left hand holds the biscuit half away.

His right hand has gone right down past his knees.

It comes up again. He achieves breaking the biscuit

again and with his right hand reaches his mouth

with a tiny piece (I am watching) and gets it in.

Now he has found the cup of tea on the sideboard

and holding it in his right hand he is drinking from it

very slowly, all the while his head down .. .

He tries to stand

and very slowly turns and is soon

heaped about the end

of the sofa, his weight greater than his power to shift it.

Two assistants help him up and sit him back on the sofa.

One says ‘Stay there’. But he wants to move, so they

help him up and he walks or is walked across the room

and into an armchair. One of the assistants pulls out

the footrest which tips the chair back. (I find myself

swaying). She puts the stool under the footrest

to support it. She adjusts the head rest, pats his chest

and says, ‘There,

have a rest.

He closes his eyes

and is still.

— David Hart

 

This poem and that on page 145 by David Hart were written when he was Poet in Residence at the South Birmingham Mental Health Trust, 2000—01. A man half bent over was originally written in an Older Adults Assessment Ward as it occurred, very very slowly, the version here being newly made. At the annual conference of the Royal College of Psychiatrists at the Queen Elizabeth II Conference Centre, a Van Gogh self-portrait reproduced as a poster for PR purposes by a drug company led to the writing of Poor Van Gogh. The whole sequence of residency poems with commentary was included in David Hart’s Running Out (Five Seasons Press, 2006).

 

DEMENTIA

 

The reality of an ageing population is that many of us will end up in residential care in our final years. Taking only the figures for dementia, one in four people over the age of eighty now suffers from progressive dementia of the Alzheimer’s type, and from ninety onwards that figure rises to one in three. At the time of writing, there are more people over sixty-five in the UK than there are children under sixteen. This is recognised as one of the most serious social problems of the twenty-first century. Who is going to look after these hosts of demented old people? Who will be there when we die?

Dementia is probably the one thing that people over the age of sixty-five dread more than anything else. It must first be said that to see this progressive decline is almost always worse for the immediate family than for the sufferer, who is usually unaware of what is happening.

There are many types of dementia; Alzheimer’s is the most common, but there are others. Confusion mimics dementia, and misdiagnosis is often made. Confusion can arise from all sorts of things – the death of a spouse or a partner, or of close relatives or friends; new surroundings, new faces – we can all suffer, at any age, from confusion. It is not confined to the elderly by any means.

Seventy per cent of all people in care homes are confused, probably because the life they have known for seventy or eighty years has come to an end, and now they are surrounded by strangers. On top of this, depression may be part of the trouble, arising from being in a care home in the first place. Often the person is grappling with the grief of bereavement, and loneliness, and the feelings of being useless and worthless contribute. The treatment is friendship, love, care, sympathy, understanding – all the qualities that generosity of the human spirit can give, and little else. Drugs and other medications have a small part to play, but if a misdiagnosis of dementia has been made, drugs can add to the confusion and deepen depression.

True Alzheimer’s disease is quite another matter. It is not confined to the elderly, but can start early in life. It is an identifiable disease, of unknown cause, of no known cure, and progressive until death occurs. There is no telling whom it is going to strike, but as our life span increases, the risk of dementia increases.

The symptoms of Alzheimer’s dementia start with frontal lobe forgetfulness of events, names, places, mixing up times, places, people, which is not difficult to live with and, in fact, can be quite endearing.

But Alzheimer’s disease will lead to other things, such as personality changes, aggression, destructive behaviour, dirtiness, random accusations and anger, and dangerous or obscene behaviour. We now recognise these as symptoms of the disease. Physical changes also occur – blindness, apparent deafness, inability to chew or swallow, inertia, muscular weakness or paralysis. Those who retain muscular strength can sometimes develop excessive walking habits – they walk from morning to night, never stopping until they fall exhausted. We are kind to these people, now – former generations of doctors and nurses kept them in chains.

The family can usually cope with these, and other manifestations of Alzheimer’s. It can be very difficult, but with day-to-day help from professional carers, they manage, inspired by love, respect and pity for the person affected. The condition is irreversible, but the patient can live for years before the degradation of the final stages occurs.

It is when Alzheimer’s reaches these stages that institutional care becomes necessary. The patient is helpless, can neither speak, eat, swallow, spit, nor cough. The body is unable to hold itself upright, the head rolls sideways or forwards on the frail neck, which cannot support the weight. The mouth hangs open and saliva dribbles out continuously. Not infrequently the muscles, instead of becoming limp, develop rigidity, and the body is twisted backwards into grotesque shapes that cannot be moved. Either way, the patient has to be strapped to a chair, and will also be doubly incontinent. The sufferer knows nothing and no one, and has reached the stage rather nastily known as a ‘vegetative state’. It is as near to death as anyone can be, and most people would say, ‘I would rather be dead’. Yet today, people can live like this for years.

In my days of nursing, patients seldom reached this state, because they died first from one of many possible causes: heart or kidney failure, bronchitis, pneumonia, septicaemia caused by bedsores, starvation because they could not swallow, choking because food or fluid entered the lungs and they could not cough. Pneumonia was the usual release. We called it ‘the old man’s friend’. Life-saving treatments were fewer than are available to us today, but also, and perhaps more importantly, medical people had far more autonomy. We were not hemmed in by bureaucracy and endless rules and guidelines. A doctor and the ward sisters could agree that treatment should not be given to a specific patient under specific circumstances, and this decision would not be questioned. Today, fear of litigation inhibits all decision-making.

In his outstanding book How We Die, Sherwin B Nuland tells the moving story of his friend Philip Whiting’s descent over six years into the extremes of Alzheimer’s.

 

… Phil became totally incontinent but was quite unaware of it. Although fully conscious, he simply had no idea of what had happened. Urine soaking his clothes and smeared sometimes with his faeces, he would have to be undressed to clean off the filth that profaned the pittance of humanness still left to him …

And through it all, he never stopped walking. He walked obsessively, constantly, every moment the ward personnel let him … Even when he was so weak that he could barely stand, somehow he found the strength to walk back and forth, back and forth, around the confines of the ward … Once seated, the frail body bent sideways because Phil didn’t have the strength to hold himself up any longer. The nurses had to tie him in lest he topple to the floor. And even then, his feet never stopped moving …

During his final month of life, Phil had to be tied into bed at night to prevent him from getting up to resume his incessant walking. On the evening of January 29, 1990, in the sixth year of his illness, puffing breathlessly from the effort of one of his fast, forced marches, he stumbled into his chair and fell to the ground, pulseless. When the paramedics arrived a few minutes later, they tried CPR [cardio-pulmonary resuscitation] to no avail and sped him to the hospital, which was right next door. The emergency room doctor pronounced him dead of ventricular fibrillation leading to cardiac arrest … [1]

The Methodist Homes for the Aged is an excellent, non-profit-making charity, and takes a high percentage of patients with Alzheimer’s who require twenty-four-hour care. The carers work cheerfully, motivated by a sense of vocation and duty. The Methodists have a specific policy for care of the dying, set out in their booklet The Final Lap. The teaching is based on acceptance of death as a fact of life, and the need to prepare for its coming, and I was discussing this with a chaplain for one of the Methodist Homes. All of their chaplains are closely involved with, but not responsible for, medical practice. Citing Nuland’s description of his friend’s condition and death, I posed the question, ‘Would you really allow such an aggressive resuscitation attempt upon anyone in that condition?’

I expected him to say, ‘No, we accept death and respect the dead.’ But he didn’t. He left it open by saying, ‘The trouble is, it is increasingly hard to define death – the boundaries are so blurred, and we do not have in each individual Home a member of staff who is qualified to pronounce death.’

He sat pondering for a minute, and then continued.

‘Apart from that, no Home wants to have too many deaths. You see, it is our policy to integrate the Home into the community, so that residents are not isolated. If too many coffins are seen leaving the premises, this could start fear and suspicion and gossip among people living in the area. You never know what might be said. This would be bad for the Home, and all the residents would suffer.’

As he said that, the memory of my neighbour’s experience flashed through my mind. The house is large, with about ten rooms and half an acre of garden, and at the time, a young family was living in it. The wife, Ginnie, was a trained nurse who enjoyed looking after the elderly, so the family decided to open four of the rooms as a residential home. They all lived and ate together, and it was a happy arrangement. The old people enjoyed the company of the children, who in turn had the advantage of seeing and living with old age. The young husband kept chickens and geese and grew vegetables. One of the old men made it his responsibility to feed the chickens and collect the eggs. A couple of ladies helped in the kitchen.

Then misfortune struck. Within a month, two of the old people died. Police investigations followed; then the local press. Repeated interrogations reduced Ginnie to a shadow of her former self. The local paper made it a matter for front-page headlines. The coroner’s verdict was that the deaths were from natural causes, and Ginnie was completely exonerated, but the two remaining residents were taken, against their will, to a registered care home, and quite a crowd gathered outside the house to watch their removal. Ginnie was distraught, because it did not end there.

The things that were said locally about Ginnie were vicious. I know, because I heard them. Matters got so bad that, eventually, the family was forced to move.

I told this story to the chaplain. He said, ‘I am not surprised. It is the sort of local reaction I would have expected.’

‘What do you do, then, if someone looks near to death?’

‘It would depend on the circumstances, but quite probably we would send the person to hospital.’

‘That’s not satisfactory, is it?’

‘No, but we have to be so careful, and it gets harder for us all the time. We even have people with feed-pegs coming into our Homes. So then someone has to make the decision to remove it.. .’[2]

His voice trailed off, and I could sense the heartbreaking difficulties that have to be faced.

A feed-peg - or gastrostomy, or jejunostomy or other parenteral routes - is an alternative to a naso-gastric tube. It is a plastic tube inserted through the abdominal wall into the stomach and fixed in position. The purpose is to enable liquid feeds to be given directly into the stomach. A study of the care of patients in the USA with Alzheimer’s, or advanced dementia due to another cause, found that fifty-five per cent of people who died of the condition, died with a feed-peg or a naso-gastric tube in place.[3]

In January 2010 a report on Oral Feeding Difficulties and Dilemmas was published by the Royal College of Physicians, together with the British Society of Gastroenterology, and endorsed, among others, by the Royal College of Nursing. This presented the results of a three-year study under the chairmanship of Dr Rodney Burnham. It reports that thousands of old people are being forced to have feeding tubes implanted in their stomachs if they need to be admitted to a nursing care home, and that this is a widespread problem, because many care homes say they will not take a patient until they have had a gastrostomy.

The report states that the practice of force-feeding old people through tubes in their stomachs is seldom necessary, is highly invasive and should not be undertaken lightly. Critics have questioned the Royal College of Physicians’ findings and pointed out that only a doctor can decide whether a person should be subjected to a gastrostomy, to which the RCP replies that there is pressure on doctors to authorise it in order to free up hospital beds by discharging patients into residential care.

Why is this practice ‘widespread’? Why do nursing care homes only accept a patient with a gastrostomy? The answer is that it will take a carer fifteen to twenty minutes to spoon-feed a patient adequately, whereas it takes about two minutes to pump a semi-liquid feed into a stomach. Drugs can be administered with the same speed and efficiency. Time is money, and the advantages are obvious.

We, the general public, are responsible for this. We are paranoid about not letting anyone who cannot feed himself die quietly as nature intended. Without knowing it, we push for force-feeding of old people.

Wherever they meet, nurses talk shop. On a walking holiday in Italy I met Sandra, an American nurse from Florida. It was May 2009, and my mind was full of the book I was writing, so I mentioned it. Her face changed from mild interest to focused attention, and her voice became urgent.

‘Oh my God! This book has gotta be written. We do it all the time. Hell, it’s crazy. We dialyse people who are ninety-eight per cent dead. They don’t know anything, can’t move, can’t swallow, can’t talk, totally incontinent, an’ we do renal dialysis, three times a week. Hell, it’s just crazy.’

‘Can you go on?’ I asked.

‘I tell you, we got a guy in our clinic at the moment with creeping paralysis – it’s got a lot of new fancy names, but it’s the same ol’ thing, creepin’ paralysis – starts in the peripheries an’ creeps up through the body, an’ when it gets to the lungs that’s it. Or it used to be. But not any more. This guy’s had it for two years, slowly, slowly losing all sensation an’ control, creeping slowly up, an’ it’s got to his lungs. So what do we do? Eh? We bring in a respirator. At the same time he loses control of swallowing – so we pass a naso-gastric tube. It’s obscene.’ She had to pause before continuing and her voice became slower and sadder. ‘Poor ol’ guy, he was so sweet. It alters y’nursing perspective, y’know. When you’re looking after someone with Alzheimer’s or creepin’ paralysis, you build up a real relationship, with a real person. When it gets to a respirator and artificial feeding, you’re just maintaining a machine, and the person gets to be a chemical reactor. It’s not the same at all.’

The sunshine suddenly seemed less bright, and the Bay of Naples less beautiful.

‘Do you think profit is the motive?’ I asked.

She shrugged. ‘Your guess is as good as mine.’

‘When will it all stop?’ I enquired.

She was fierce in her reply.

‘I’ll tell you. It’ll stop when the money runs out. When relatives have to pay for it out of their own pockets. When they can’t demand that the insurance pays for it. That’s when it will stop.’

‘When the money runs out’! Great poets and writers and thinkers can express the inexpressible, and see way into the future. Samuel Beckett, in his book Malone Dies, published in 1951, wrote, ‘There’s no place in America where a man can die in peace and with some dignity, unless he lives in abject poverty.’

The possibility of extending life for long periods of time opens the door to exploitation, and I have a hunch that it’s possible a good many people might be kept alive for the money they bring in.

Look at it this way. Only a small number of nursing care homes are non-profit charities, and these are mostly faith-inspired. The majority of care homes are profit-making establishments, which can be bought and sold on the open market. Some of them are public limited companies, with a board of directors whose first responsibility is to their shareholders. Care homes can be very profitable, and it is alleged that some directors lead millionaire lifestyles.

Every institution, be it something like a school or a sports club or whatever, relies on numbers to keep going. If the numbers drop, the institution becomes economically unviable. Private clinics, rest homes and nursing care homes, all of which rely on cash flow, are no different. They have to maintain a certain number of paying patients to keep going. A death represents loss of revenue. The more expensive the place, the more urgent the need to keep the beds filled.

Everyone I have tried to speak to on this matter shuts me up, or changes the subject. But body language is more eloquent than words. A sudden gasp of breath, a widening of the eyes, or tightening of the mouth, suggest that I have dared to broach a subject best avoided.

Betting has never been my obsession, but I would bet that my hunch is correct!

 

WHO CARES?

 

Half a century ago, there was no distinction between nurses and carers, because student nurses did all the work that carers now do. A young girl’s nursing training started with three months’ classroom induction. Then followed a full year of basic, hands-on, bedside nursing care – in other words, all the mucky work. Two more years of ward work had to be completed before State Registration. We were constantly under the strict supervision of the staff nurses, ward sisters and, ultimately, Matron – all of whom had been through the same training. It was a real apprenticeship.

But nursing was firmly stuck in the past, based on the old Nightingale tradition – docile acceptance of rigid discipline under a hierarchical system that was sacrosanct. Reform was necessary.

The Salmon Report (1966) appeared first, proposing new management principles for nursing. Some of these changes were undoubtedly needed, but I remember the shock that swept through the profession, and later the whole of society, when it was announced that the post of matron would be axed, leaving no one with overall responsibility for nursing standards.

1972 brought the Briggs Report. It proposed that nurses’ courses in further education colleges should be established. However, nurses were still working long hours on the wards, and if they left, someone would have to replace them. This problem was not, and has never yet been, adequately addressed.

The Griffiths Report came next (1983), under the chairmanship of Sir Roy Griffiths, the Chief Executive of Sainsbury’s, with a committee that did not include medical or nursing representation. The report recommended that management based on business models should be introduced to save the government money. According to Griffiths, there should be no difficulty in transposing the principles of commerce to the NHS. Once you let economists and accountants get their hands on things, you quickly lose sight of the original objective!

Project 2000, 1986, was the work of a new statutory body, the UK Central Council for Nurses (known as the UKCC) who, with the Royal College of Nursing, debated the training of nurses. Higher education was becoming absolutely essential. One small example will suffice to illustrate this: in my years of training we had a few hundred drugs, of which about forty or fifty were in common use. Now, medicine has hundreds of thousands of drugs in its armoury, of which about one thousand are in daily use. They all have to be known – their dosage, action, reaction, cross-reactions, allergic reactions. If I were working on the wards today, with my level of knowledge, I would be a danger to the public! A good education is essential, to degree standard.

Project 2000 aimed to bring students under the aegis of academia, thus removing their isolation from mainstream student life, and enhancing the image of nursing as an academic discipline. This, in my opinion, is a wonderful aim. Project 2000 is lengthy and wide-ranging, mostly relevant only to the professions, but the following are three of the main features of reform that are pertinent to the care of the sick and ageing:

 

To separate education from service by conferring supernumerary status on students and creating bursaries in place of training salaries.

To create a single register that would do away with the Enrolled Nurse grade, and to simplify the designation of first-year student nurses.

To establish a new clinical grade of support staff, essentially to replace junior nurses and enrolled nurses, whose function would be fulfilled by these aides.

 

‘To separate education from service’. Herein lies the rub. Nurses need higher education, but they also need practical training in bedside nursing. A thousand and one tiny details, some so small they are barely perceptible, are involved in basic nursing care, and these details have to be learned; they are not obvious to the casual observer or to someone who thinks they could just do the job.

The second reform dealt with the proposal to do away with the State Enrolled Nurse (SEN) qualification. Nursing staff had always had assistant nurses or auxiliaries to help them. The Voluntary Aid Detachments (VADs) in the military hospitals of the First World War are just one example. Later in the century, the SEN received a training approved by the Royal College of Nursing (RCN) that was essentially the same as the first year of student nursing. The course appealed mainly to married women who had family commitments, who enjoyed nursing but did not want responsibility. I worked with several and, as a ward sister, knew that an SEN was a great asset, providing stability and continuity on a ward. Also, she was often a mother figure to nervous young students, doctors as well as nurses. But Project 2000 looked ahead to a single register of graduate nurses, in which a second grade of enrolled nurses had no part.

When I read the words ‘To establish a new clinical grade of support staff,’ I was unclear what this might mean, but assumed it could easily be found out. Two months later, after an exhaustive study of professional papers and government reports, after rushing around all over the country interviewing people, I am still unclear, and get the impression that everyone else is, too!

Let’s start with the name or title for these support workers. My researches produced about twenty different names. When I told this to a spokesman for the RCN, he laughed: ‘Over the history of the RCN we have come up with 295 different names for support staff, and there may be more.’

From the inception of Project 2000, statutory powers enabled the UKCC to phase out the apprenticeship approach in favour of more academic training. Nurses started to leave the wards, and that was when carers came in. It was the first time the word ‘carer’ had been used as a job description. Hitherto, they would have been called auxiliaries, assistants, or one of the 295 options. By the 1990s, the title Health Care Assistant (HCA) became accepted, and this seems likely to stick.

In my capacity as an ordinary person, or ‘Everyman’, seeking to get to grips with this revolution in healthcare provision, I studied a great many documents, Government Reports, professional reviews, websites and journals distributed for public information by the Care Quality Commission (CQC, formerly known as the Healthcare Review Body). Whilst the area is muddy and changing all the time, the following is taken from my researches and is accurate at the time of writing:

Question (from ‘Everyman’): So who does the basic nursing these days?

Answer (information gleaned from CQC documents): Health Care Assistants.

Q : And who trains them – the RCN?

A: No. The employer, the Trusts, the NHS Training Authority, the care home, the agency or an independent hospital.

Q : What training could the Trust give, for example?

A: This can vary. Some trusts offer up to six weeks induction and training, whilst others provide two weeks of support for new Health Care Assistants.

Q : What training would a private hospital, clinic or care home give?

A: There is no national standard, and on the whole it is very little, a couple of days at most. However, all health care workers must show the Criminal Records Bureau clearance, and complete a brief induction.

Dear Heaven, it can’t be true! And we had fifteen months’ training in basic nursing.

I have two nieces who are health care assistants. One of them told me that she had worked with disabled children, and decided to change to geriatric nursing. She said, ‘So the agency sent me on half a day’s training.’

‘What!’ I gasped. ‘You can’t be serious!’

‘Yes, that was it, half a day. But remember, I had had experience in caring, and I had done some home visiting, too. If I hadn’t, I suppose they would have sent me for a whole day, perhaps even two.’

So it is true.

Induction consists of three parts, which can be completed in a morning:

1. Fire drill, conducted by a fire officer

2. Moving and handling

3. Protection of vulnerable adults.

‘Moving and handling’ is instruction in how to use the winches, slings, pulleys etc., required for moving or lifting an immobile or helpless patient. Some of this equipment can be very complicated, and the company that makes these gadgets supplies a video instruction on the correct use. The purpose is to protect the employers and suppliers from claims of injury to nurses or care assistants from moving or handling patients incorrectly.

‘Protection of vulnerable adults’ is basically looking at different kinds of abuse, such as staff bullying or manipulating patients, or thieving. It is a video documentary, made by professional actors with advice and short, acted scenes of what can be done, and what one should not do. The purpose is to protect the employer from claims of malpractice. The video takes about forty-five minutes to run.

National Vocational Qualifications (NVQs) have been available since the 1970s. They are based on national standards of practical competence in a wide range of occupations (over 1000) varying from bricklaying to hairdressing to catering.

In 1988 the Healthcare Review Body (now the CQC) examined the position of carers, and, as a result, the NVQ training was started for prospective health care assistants. This is essentially a qualification in practical skills, and the training is on-the-job experience. There are three levels of achievement, trained, monitored and assessed by …

Question (from ‘Everyman’): … by whom?

Answer (from my research): It could be that the trust has a nurse-led training, followed by supervision of practice by a qualified assessor, and then both internal and external verification by an awarding body such as the City and Guilds.

Q : What is the training for care assistants in private hospitals or clinics or in nursing care homes?

A: This will depend on the organisation. In theory, a nurse on the staff should train and monitor care assistants. But, in practice, this is unreliable because some employers will take a carer after a day’s induction and there may be no nurse available to offer further training. There can be a wide difference between the training and supervision of care assistants in NHS hospitals and those employed privately.

Q : If the private establishment has no nurse to train potential carers, who does train them?

A: National Care Training Providers.

Q : And what training do they offer?

A: Telephone help throughout the day.

Q: So is it seriously proposed that basic nursing can be learned by telephone?

A: It is a telephone support line.

Q : Is this support line open at night?

A: No. Care assistants also have one-to-one contact with a specially trained NVQ Care Assessor.

Q : How often is one-to-one contact available?

A: By appointment, when it can be arranged.

I have mentioned my two nieces who are HCAs. The younger one is on NVQ Level 3, and her elder sister is on Level 4. I asked the younger why she did not take the Level 4 qualification. She replied: ‘I don’t see the point. I wouldn’t earn any more.’

‘But it says here in the syllabus that you would.’

‘It may say that, but I wouldn’t get it.’

‘What do you earn now?’

About £5.40 an hour. It might be £$.70 – I’m not sure.’

Her sister interrupted: ‘I was on £5 something an hour for years and years, even after I passed Levels 2, 3 and 4; it made no difference to the pay But now I get £8 something an hour because I have worked there for a long time. That makes a big difference.’

My nieces both work in nursing care homes, one in Reading, the other in Plymouth. I asked them why they did the work for such a pitiful wage. They replied, almost in unison, one echoing or agreeing with the other:

‘Because I love it.’

‘It is deeply satisfying.’

‘I love knowing that I have made a difference to some old person’s life who might be lonely or unhappy.’

‘At the end of the day, or night as it might be, you feel you have done something worthwhile.’

‘It’s very rewarding work.’

I looked at them with deep respect. I have always loved them both, but had no idea of the depth of their vocational commitment and unselfishness. Sue, the older sister, is a very thoughtful and impressive woman. She is a Jehovah’s Witness, which is a life-affirming religion, and she bubbles with laughter half the time, and radiates warmth, kindness and compassion, which she says, in a large part, has come from her faith. She sees it as God’s commandment that she should be a Witness by working for those in need. I am sure she would work for nothing if she did not have bills to pay.

I sent this chapter to them both for approval and had a letter in reply from Sue containing the following paragraph:

 

I have chatted with Jayne and we are both of the same mind, that maybe we gave you an unfair description of our training, which I must make clear is always ongoing throughout our working life in the units we are employed in. There are always updates in line with CQC and care standards. We are not nurses but care assistants who provide a vital role in the physical and emotional care of the people who for one reason or another find themselves in care homes or day centres such as ours.

This is the ideal standard, expressed by two ideal care assistants, and I know it to be true; the CQC, with support and advice from the RCN, is all the time striving to improve standards through on-going training. However, the stark fact is that a huge number of people working in private hospitals, clinics and nursing care homes have no training whatsoever, and do not stay long enough in the job to benefit from the training that may be on offer.

Nursing Care Home Managers are supposed to employ only people with NVQ Level 3 qualifications. However, a survey conducted for the End of Life Care report, issued by the National Audit Office in November 2008 (p.6, sub para 15) found that fewer than five per cent of nursing care home staff had this minimum qualification. Why, then, are they employed? The reason is because the managers are desperate for staff. They must have someone to cover the varying shifts over twenty-four hours, and night duty is the hardest to get anyone for. They could not function if they insisted on this Level 3 qualification.

An NVQ seems to be the minimum qualification that is obtainable. But it can be bypassed altogether. Agencies offer a bit of training that amounts to shadowing another carer for a few hours, and this is accepted as enough for someone to get a job.

It seems to me that care assistants fall into one of three categories:

1. Those who are wholly and selflessly dedicated.

2. Those who enjoy looking after people, but don’t want responsibility.

3. Those who can’t get any other job.

The last comment is certainly not meant in a derogatory way. A great many of those in the third group are newly arrived immigrants from middle European countries (the former communist bloc) who need a work permit to stay in the country, and who can get one by signing up to take the NVQ Healthcare at Level 1, and working in a care home. Many of these boys and girls are very good indeed, and I have met them. They are young, bursting with life and happiness, not afraid of hard work or getting their hands dirty. Also, having been brought up in a culture that does not exclude the old from family life, they are gentle and understanding.

In 2013, it will be mandatory for all newly recruited nurses to have a degree. It will not be possible to enter the nursing profession by any other door. Suddenly it is upon us – health care assistants will be the most significant workforce in hospitals and care homes. At present, it is estimated that there are over 700,000 practising HCAs in the UK, but, as they are not registered or regulated, the number is not really known. Their training has been insufficient, to say the very least, yet they will be the ones who do the basic bedside nursing that is the foundation of nursing care, as anyone who has suffered long-term illness or debility will tell you. It is also, for this reason, the most noble.

Doctors come and go, but nurses or care assistants are always there. All the high-tech, multi-drug paraphernalia in the world is as nothing beside the human need for human touch and contact – which is what good bedside nursing is all about.

We can prolong life for decades, and resuscitation is fast becoming the norm, and all these people will have to be looked after. The decisions are made by government think tanks, by teams of professors at the British Medical Association, by ethics committees consisting of philosophers and theologians and senior judges. But having come to their conclusions, and issued their reports, they can walk away from the problem. They don’t have to do the work. The work is left to care assistants, who receive barely a living wage for work that is arduous and demanding, and for whom the strain can sometimes be insupportable.

We are a rich nation, and like all rich nations we need a subculture of underprivileged people to do the dirty work that we would not want to see our sons and daughters doing. Much of the work of care assistants falls into this category, and they are the ones who will look after us in our old age. It is worth remembering that, when our faculties, our senses, our mobility and our organs fail us, health care assistants will be more important to us, and have far more power over us than doctors.

Let me end this chapter by reproducing some of the NVQ introductory literature, which can be obtained online. It is addressed to prospective health care assistant candidates at the initial entry level:

 

NVQ Care Programme Information Pack  

There are no academic qualifications needed to be a care assistant. All care assistants are expected to undergo a twelve-week induction programme [this is frequently not observed -author’s comment]. Direct experience is not necessarily required for the job, but it is useful to have some experience in working with people. Care Assistants are in high demand and it is relatively easy to get a job. The main employers are social services, hospitals, private or NHS nursing homes and agencies.

Personal skills : Care Assistants need to have excellent interpersonal skills and the ability to work with all kinds of people in situations which can be stressful or emotionally draining. More specifically they should have:

A friendly approach and the ability to put clients at ease, whatever their physical or social needs

The ability to be tactful; and sensitive at all times

A good sense of humour

A high level of patience as shifts can be long and often stressful

Excellent communication skills

The ability to deal with aggressive or anxious clients

A certain level of physical strength

Good stamina

The ability to stay calm under pressure

The ability to think quickly and solve problems as they arise.

Working Conditions : Care Assistants usually work shifts, which means their hours and days of work vary from week to week, and may include night shifts or weekend work. Shifts can be long and demanding, so care assistants need to have good stamina and both physical and emotional endurance.

The contempt with which this hedonistic society looks upon simple virtues is reflected in the pay reward. We offer care assistants £11,000 a year: that is £5.70 an hour, with no guaranteed sick pay, holiday pay or maternity leave, and no guaranteed pension.

Would you, the reader, do it? Could you? Would you advise your son or daughter to become a health care assistant?

 

Truly, truly, I say to you, when you were young you girded yourself and walked where you would; but when you are old, you will stretch out your hands, and another will gird you, and carry you where you do not wish to go.

— St John, ch.21, v. 18

 

1968

CONGESTIVE HEART FAILURE

 

The year was 1968, and I was night sister of a small provincial hospital. I walked into the ward, and there he was – Dr Conrad Hyem. We recognised each other instantly, though it had been many years since the night in Poplar when we parted. No doubt we had both changed. I was a married woman in my thirties with two children. And he? Well, he was very much changed. He looked frail, sitting up in a hospital bed, breathing with difficulty a bluish tinge around his nose and lips, and an anxious look in his eyes. The ward was quiet after the daytime bustle, and peaceful. A single light glowed above the bed of the frail old man suffering from congestive heart failure. I went over to him, sat on the edge of the bed, and took his hand. He squeezed it, and a crinkle in the corners of his eyes showed his pleasure.

‘Jenny Lee,’ he whispered, ‘after all these years … I have not forgotten you. How could I? And now you come to me when I am dying. You are thrice welcome. What a happy chance.’ He sighed with contentment, and squeezed my hand again, such a weak little squeeze. ‘A happy chance.’ He looked up and smiled once more.

The effort to speak had made him breathless, and he leaned back on the pillows panting, shallow breaths, his nostrils dilated with the effort to take in more air. An oxygen cylinder was beside his bed, and I turned it on and placed the mask over his face. He breathed the life-giving gas for a few minutes, and then pushed it away. I adjusted his pillows, and he leaned back comfortably and closed his eyes. I whispered: ‘I must go round the wards and see my other patients, but I will come back; be assured of that.’ He nodded and smiled and patted my hand. ‘Jenny Lee,’ he whispered, ‘a happy chance.’

 

*

 

A hospital is a lovely place to work in at night. Staff is reduced to about ten per cent of the number required during the day and there are no routine admissions or discharges, no routine surgery, no moving of patients to special departments for treatment, few telephone calls. All is quiet. I refer here to the general wards of a hospital, and not accident and emergency, where day can blend into night, and night is usually more hectic than day.

I went quietly around the hospital, taking the night report from each nurse in charge, seeing a patient here or there, checking a drug, adjusting some treatment, mentally noting this or that to be checked on the next night round, and then returned to the male medical ward, where I sat in the office reading Dr Hyem’s notes. Congestive heart failure was the diagnosis. Long-term diabetes, for which condition I had treated him in the first place, had caused generalised atheroma of the arterial circulation (atheroma – from the Greek for ‘porridge’). Just as a plumber may say, ‘Your central heating won’t work because the pipes are all furred up,’ so it is with the circulation. The arteries become congested and the heart, which is the central pump, gets weaker and cannot work properly.

I paused in my reading to ponder what I knew of his past life, his moral strength, his suffering, his mental anguish, and his heart’s grief at the loss of his wife and children in the Nazi gas chambers. ‘His heart’s grief’ – can the heart grieve, or is it just a pumping mechanism to circulate blood and oxygen throughout the body? Is mankind just a series of reactions to chemical and biological stimuli, or are we more than that? Will we ever know? Perhaps it is better that we can never be sure.

I continued reading. Dr Hyem had had several warning attacks of angina pectoris, which can best be likened to cramp. It is painful but not fatal. For years he had been inhaling the fumes of amyl nitrite and taking digitalis, which is a very ancient extract of the foxglove plant, known to mediaeval monks, and cultivated in their herb gardens. At the same time, atheroma of the blood vessels caused sluggish blood flow, and his heart’s efficiency was compromised. This led to other problems.

Oxygen is the key to animal life. If every cell in our bodies does not receive sufficient oxygen, it will die. That is what had been happening to Dr Hyem for several years. Due to lack of oxygen, the functioning of his lungs, kidneys, liver, pancreas – all his organs – was affected and their efficiency seriously diminished. This is the end result of congestive heart failure.

Eventually, Dr Hyem’s labouring heart could take no more and he had collapsed in a shopping area. An ambulance was called and had brought him to hospital where we were able to treat him. In these days of high biotechnological medicine, the treatment available back then does not seem much – morphine sedation, bed rest and an oxygen tent, amyl nitrite, digitalis, heparin (an early form of clot-buster), mersaryl (an early diuretic). It may seem very little, but it was enough to pull him through, at least temporarily.

I turned to the second page of his notes, and read, ‘Next of kin – none.’ That was all. Dr Hyem, a Viennese Jew, living in the wrong place at the wrong time, had lost his entire family – murdered. At the end of life, all that could be recorded of these atrocities was ‘Next of kin – none.’

Within a few days Dr Hyem improved. His heart rhythm had stabilised and his breathing became easier. The oedema lessened somewhat, and the cyanosis all but disappeared. He was able to get up and sit in a chair. He could walk to the lavatory. He could take a bath, with a nurse’s help. He could talk without exhaustion, and even read a little. His diabetes had been thrown out of control by the attack, and the amount of insulin he had been taking for many years was no longer applicable. His urine had to be tested, and an insulin injection adjusted twice daily, otherwise he would have developed hyperglycaemia and acidosis. But, all things considered, there was a big improvement.

I was so happy to meet him again and to be able to give him my friendship and professional care. Each evening we talked, and this was when he told me a little of his personal wartime experiences. But I am sure he left much untold, things that were too painful to put into words. I expressed my surprise, once, that he was not bitter. He said: ‘We have to forgive the unforgivable. But that does not mean forget. These things should be remembered. But if we do not forgive, we will poison our lives, and the lives of others, and evil will win.’

I thought of my poor Uncle Maurice, who had spent four years in the trenches in France and Flanders in the First World War, and whose whole life had been eaten away by savage hatred and resentment. He spent forty years hating mankind. Dr Hyem’s philosophy of forgiveness was not only wiser, but kinder to himself.

We could talk only for short periods because, firstly, it tired him, and secondly, I was night sister, with a whole hospital in my charge and many duties to attend to. Nonetheless, I was grateful for the opportunity to get to know him better.

Sometimes he spoke of death, as my grandfather had. ‘My time has come and I am content. “Everything in its season”, as the prophet teaches us; “there is a time to live and a time to die”.’

On another occasion he said, ‘I have seen so much horrific death in the camps and I think about the spirits of the departed more and more as I draw closer to them.’

Little sentences or half sentences, here and there, built up a picture of his philosophy.

‘Why did I survive? I often wonder. Why did I have to bear the perpetual pain? To die would have been easier. I’m glad my time has come at last.’

On another evening, he was reading his Hebrew prayer book when I approached his bed. He looked up, with a wry smile.

‘From ancient times Jews have described death as “God’s kiss”. Wishful thinking on the part of a people who have suffered for two thousand years at the hands of cruel men, I think. Death is only a “kiss” if it comes naturally. What do you think, eh, Jenny Lee?’ (He always called me by that name.)

One evening, he said to me, ‘I know enough about the human body to know that one day, perhaps quite soon, I will have another heart attack and that will be the end of my life. I want it to be the end. I don’t want anyone messing about with me, trying to pull me back from the brink.’

‘It’s unlikely,’ I said. ‘This is a small hospital. We only have a resuscitation room with two beds, and I don’t think it is very well equipped. Anyway, you are seventy-eight and no one with any sense is going to try resuscitating a man of your age.’

‘That’s a comfort. Nonetheless, promise you won’t let them do it.’

I promised, but said he should speak to the consultant and to the ward sister about his wishes. He told me that he had already done so.

These were the last words that Dr Hyem spoke to me. I went off duty at 8 a.m. During the day he suffered a massive heart attack and was not expected to live. The onset had been sudden. He was reading the morning paper and gave a cry, clutching his chest, and collapsed unconscious. It was thought that a blood clot, which is always liable to develop if the circulation is sluggish, had probably lodged itself in one of the pulmonary arteries.

Dr Hyem was treated as an emergency, with all the drugs and equipment available at the time, and he rallied.

At 8 p.m., when I went on duty, Dr Hyem was semi-conscious, but stable. If it had not been for the drug treatment and oxygen he would have died, probably within an hour or two of the infarction. However, he was close to death. I looked at him with deepest sadness. To lose an old friend is not only sad, but always tinged with regret, regret for all the little things left unsaid or unfinished. I had planned, in my mind, that, as he seemed to be getting better, and as he lived quite close to us, he could become part of our family group. I knew that my husband, an intellectual if ever there was one, would like him and be endlessly fascinated by his conversation. Perhaps my little girls would like him, too, and see him as a grandfather; this would be a source of happiness to him in his old age. All these plans – and now it was not to be.

A nurse was taking his pulse and blood pressure when I went into the ward. I told her to stay with him, and that I would return when I had completed my first night round in order to sit with him.

I completed the night round and returned to Dr Hyem, taking with me all the hospital notes and records from my office, so that I could write them up while I was sitting there. I told each of the nurses and the night porter where I would be, if needed.

I sat behind the curtains in the dim, green-shaded light. I listened to the hushed sounds of the ward. Dr Hyem was no longer in pain. He was unconscious, or perhaps semi-conscious, and breathing slowly but deeply. His pulse was not perceptible at his wrist, but I could feel the carotid beat, very faint and irregular. His eyes were closed, and his expression peaceful.

At ten o’clock we turned him, a nurse and I, and he seemed to be faintly aware of the movement. I leaned over him and said slowly and clearly, ‘Hello, Dr Hyem. It’s Jenny Lee. I am here with you, and I won’t go away.’ He made the faintest sound to indicate that he had heard and understood. I took his hand, and his fingers moved in response. Then he sighed and drifted into sleep again, or was it unconsciousness? Where are the boundaries in these states? Later, he was beginning to feel hot, so I took a cold flannel and wiped his face, neck and chest. Again a faint sound, a sort of appreciative ‘Mmm …’ on the outward breath told me that he knew I was there, and that he wanted me there.

I have always been convinced that unconsciousness, in a dying patient, is not wholly without perception or feeling, or even thought. The dying, even to the last breath, know who is with them. Perhaps they drift in and out of awareness of this world and indifference to it. Perhaps they are entering, or perceiving, another world that we cannot see. Where does life begin, and life end? Where do two worlds meet, or is it an illusion? We will never know. Birth, life, and death are mysteries and it is fitting that we should never know.

I sat with Dr Hyem for an hour or more. A telephone call came through, and briefly I went to another ward to answer a nurse’s request to check a drug, but returned to my friend’s bedside. He looked very peaceful, and I felt sure he would slip away before morning. The darkest hour before dawn is the time when the forces of life leave the body most frequently. After the tragedies and traumas of his life, I was glad that Dr Hyem was dying peacefully and painlessly.

At about midnight, an urgent call came from the children’s ward. A baby who had been operated on for repair of a cleft palate was having breathing difficulties. I said I would come and asked a nurse to stay with Dr Hyem.

The baby was choking and turning slightly blue. The night nurse had been feeding him water, but a little must have been regurgitated into the nasal cavities, making him choke. It was alarming, but not terribly serious. Holding him head down, patting his back to encourage coughing, and sucking out the fluid, restored normal breathing fairly quickly. The baby took no harm. However, one look at the nurse told me that she was in a far worse state than the baby. She was deadly white, shaking and sobbing uncontrollably. Not long before that incident a baby had died in a nurse’s arms, and the whole ward had been sad and subdued. No doubt the girl was thinking of that. She kept saying, ‘I don’t know what happened, Sister. I don’t think I did anything wrong. Was it my fault?’ I had to reassure her and told her it could have happened to anyone. I suggested she should sit quietly, cuddling the baby, for a while, and asked another nurse to bring her a cup of cocoa.

With one thing and another, I was away from the medical ward for longer than was originally expected.

 

OPEN HEART RESUSCITATION

(also known as Direct Manual Compression)

 

I returned to the male medical ward to resume my vigil with Dr Conrad Hyem.

Tread softly as you draw near to the bedside of a dying man, for the space around him is holy ground. Speak in hushed tones, with awe and reverence, as you would in a cathedral. Let not the mind engage in trivial thoughts. The awesome majesty of Death can only be met in silence.

As I approached the ward, I was aware of light and commotion coming from within, and when I entered, I saw that it was coming from Dr Hyem’s bed. The curtains were drawn, but brilliant light was shining and half the men in the ward seemed to be awake.

I pulled aside the curtains and found a full-scale open-heart resuscitation being carried out by three doctors, one of whom, the registrar, had a scalpel in his hand.

Dr Hyem was lying flat on his back. His chest had been cut open on the left side, from the sternum to the lower back ribs. Blood was oozing out, and the smooth chest muscle was glistening in the bright light. Rooted to the spot, unable to breathe or make a sound of protest, I watched the registrar with a swift, easy movement slice through the pleural muscle, revealing the ribs.

‘Retractor,’ he demanded.

I found my voice. ‘No! No! What are you doing? Stop! Stop it, I say!’

He ignored me. He inserted the retractor between two of the ribs, and turned the ratchet to open the double arms of the instrument to their full potential. I heard a rib crack.

‘Stop it!’ I shouted.

Perhaps he had not heard, as he continued with the ratchet, and I heard a second rib crack.

‘Scissors,’ he demanded.

By then I was getting close to hysteria. I took a couple of steps forward.

‘What are you doing? Stop it. He’s dying – can’t you see that? Leave him alone.’

The doctor was cutting through the pericardium with surgical scissors. He muttered, ‘Who the devil are you? Get to hell out of here.’

He inserted his hand through the open chest wound and grasped Dr Hyem’s heart; then he began a series of steady, firm compressions.

There was blood all over the place, dark venous blood, black and sticky, covering the doctor’s white coat, and the sheets and pillows scattered across the floor.

‘It’s fibrillating badly, but at least there’s some movement,’ he said as he continued his compressions. ‘How long have we been at it?’

‘Two minutes twenty,’ replied one of the housemen.

‘Not bad. If we keep it up, we should win. Here. You take my place. Then you will know what to do next time.’

He withdrew his hand and stepped backwards. One of the others took his place and inserted his hand through the hole in the chest wall.

‘Can you feel the heart?’

The young man nodded.

‘The ventricles fibrillating, like a jellyfish wriggling?’

Again the houseman nodded.

‘You can? Good. Now just squeeze the lower myocardium – regular – firm – steady; one squeeze about every second. That will force the blood upwards, out of the ventricle into the upper chamber and into the circulation.’

This was obviously a teaching exercise.

The older man stood up and stretched his back. He wiped his bloody hand down his coat.

‘That was good,’ he said with satisfaction. ‘We are winning. I can feel a pulse in the jugular.’

Then something spine-chilling occurred. Dr Hyem, lying flat on his back, opened his eyes and stared into the brilliant light shining directly on him. His mouth hung open, and a rasping roar was emitted from the depths of his throat. It was a ghastly noise, like the whoop or howl of an animal in agony. The sound rose to a crescendo and then stopped abruptly, and the silence that followed was almost more dreadful than the roar.

I ran around to the other side of the bed and took Dr Hyem’s head and shoulders in my arms in a futile attempt to protect him. He looked at me, I swear he looked at me, and in his eyes was reproach. He had said, ‘When my time comes I want it to be the end. I don’t want anyone messing about with me.’ I had promised that he would die peacefully, and I had let him down.

I have lived with that look of reproach all my life.

‘I told you to get out of here, woman. Now clear off and don’t interfere,’ barked the registrar.

‘I am the night sister,’ I exclaimed, ‘and Dr Hyem is in my care!’

‘Bloody fine care you give, trying to be obstructive.’

Then to the team, ‘He’s coming round. Excellent. Ah! There’s the porter with the machine. Splendid. Bring it over here.’

He spoke to the two younger doctors. ‘Fix it up, and it can take over the massage. Now, we will want a central line through the iliac vein, and another in the subclavian, but try the iliac first, and a shot of adrenaline direct into the myocardium. Get a tracheal tube down him, and fix up the oxygen supply.’

Then again, to me: ‘Look, I told you to clear off.’

‘I am the night sister.’

‘I don’t care if you’re the Queen of bloody Sheba! Get out of the way. I want to get a tracheal tube down him.’

I was pushed aside, and one of the young doctors tried to insert the catheter into the lungs. It is not an easy thing to do, and he had to make several attempts.

‘Arch the neck. It will go down easier. More than that, pull the head backwards; you’ve got to locate the trachea. It’s no good if the thing goes into his oesophagus. We don’t want to oxygenate his guts.’ He laughed at his own joke, and the others laughed in unison.

‘Have you no respect for the dead?’ I bleated, despairingly.

‘He’s not dead, you stupid cow. He’s coming round. This has been highly successful.’

There was nothing I could do. I covered my face with my hands to hide my tears and fled to the office. The nurse whom I had left sitting with Dr Hyem only half an hour earlier came in.

‘Are you all right, Sister? You look dreadful. Can I get you a cup of tea?’

I couldn’t look up. ‘What happened?’ I moaned. ‘How did this happen?’

‘I was sitting with him, like you said, Sister, and he stopped breathing, and I couldn’t feel a pulse, and I didn’t know what to do, so I rang the emergency button.’

That was all that was needed. A young, inexperienced nurse, seeing death, possibly for the first time, and quite possibly frightened at being alone, and me, her senior, unavailable. So she had pressed the emergency button, and a resuscitation team arrived. Once started, the process could not be reversed. And, as the registrar had proudly stated, it had been highly successful.

 

LAZARUS

 

The wound in Dr Hyem’s chest was sutured under local anaesthetic, the broken ribs realigned, and the chest bound, to keep them in place. We then raised him to a semi-recumbent position and changed the bed linen. Oxygen was directly entering his lungs, so his colour was good, and the cardiac machine maintained his heartbeat. Fluid was dripping into his circulation, and drugs were introduced to raise the blood pressure, to stimulate the heart muscles, and to thin the blood; antibiotics, a clot-buster and diuretics completed the cocktail.

The registrar and his team were exhilarated by their success. They had saved a life, and that’s what medicine is all about. Lazarus had been raised from the dead. It was a miracle of modern medicine.

The team prepared to leave, all of them exhausted. By then it was 3 a.m., but adrenalin had been pumping through their bodies and now they were worn out. The registrar apologised for his rudeness. ‘It’s the tension that gets me,’ he said. ‘I’m not aware of it. I snap at everyone, they tell me.’ He left with instructions about monitoring the cardiac, pulmonary and blood pressure responses to the machines, and the adjustments that should be made in the event of physical changes.

Dr Hyem breathed quietly all night. His pulse and blood pressure were steady. The drip dripped, the oxygen hissed, the cardiac machine hummed quietly, and the twenty or more men who had been awake during the commotion of the night fell asleep as dawn was breaking.

I had many other duties to attend to in the hospital, but stayed with Dr Hyem as much as possible, and, as I looked at him breathing quietly, I began to feel ashamed of myself. He was alive. Why should I have wished the old man dead? It was unworthy of me; wicked even. He was alive due to the miracles of modern medicine. Nearly twenty years had passed since I had started nursing and everything had changed, scientific advances in drugs, surgery, in technology. I was old-fashioned, I told myself, and must embrace these changes.

At 6 a.m. I started my morning round of the hospital. It was still dark, but the return of day could be felt in the air – sleepy sparrows began to chirp, an early morning milk delivery could be heard in the streets, the first kitchen workers were arriving. As I finished my round, light was returning, and the fears of the night, enshrined in all our fairy tales, were receding. Had the darkness played its part in exaggerating the terror I had felt for Dr Hyem, I wondered?

By about 7 o’clock I had finished the morning round and was able to return to Dr Hyem. The registrar was there before me, checking the dials and drips, listening carefully to his patient’s heartbeat and lungs, taking a sample of blood for path lab investigations.

‘I owe you an apology.’ I said, ‘I doubted you.’

‘No, no, not at all. It can be pretty scary, but as you can see, it can be successful.’ He held out his hand towards Dr Hyem, who looked peaceful. ‘Not every attempt turns out as good as this one. In fact, if I’m honest, most fail. But it’s worth having a go, just to get a result like this.’

He continued with his checks and adjustments, saying as he did so, ‘New techniques for resuscitation are being pioneered in America. Some of our teaching hospitals are using them. Statistically, they are more effective. I would like to try them myself, but we don’t have the equipment here in this backwater.’

He’s a good man, I thought, and a dedicated doctor. He can’t have had more than a couple of hours’ sleep, but still he felt the need to see his patient before starting the day’s routine.

He patted Dr Hyem’s hand. ‘Well, you’re doing nicely, Dad. I’m pleased with you. We’ll have you running around again in a few days. I’m off to get some breakfast now, and I’ll come in and see you later in the day.’

As he left he said, ‘I’ve got a morning in theatre. Tell Sister Tovey I’ll be here around lunchtime.’ Then to Dr Hyem, ‘Doing nicely. You’re doing well. Keep it up.’

Such energy, such confidence, is invigorating.

Sister Tovey, the ward sister, to whom I gave the night report, felt differently. She was a woman about twenty years my senior and was nearing retirement. She had been nursing throughout the war, with two years spent in Egypt, receiving casualties from the fighting in North Africa, a great many of whom died for want of adequate medical attention. She was a woman of vast experience and few words.

‘Dr Hyem told me he wanted no resuscitation,’ she said.

‘He told me that also.’

‘And he told the cardiologist. I know, because I was there at the time.’

‘It must be recorded on his notes, then.’

Together we looked, and there, written quite clearly on about the fourth or fifth page, were the words, ‘In the event of cardiac arrest, do not resuscitate.’

‘I suppose they didn’t see that,’ I muttered.

‘More likely didn’t look! These resuscitations have to be carried out at lightning speed. There’s no time even to think. Just get on with it, that’s the message. I don’t like it. Not a bit.’

‘Well, he’s alive,’ I said.

‘What for?’ she demanded.

The question seemed callous. But was it? Or was it realistic? My first doubts, momentarily dispelled by the registrar’s breezy confidence, returned. I did not reply.

‘What for, I say? Congestive heart failure? Renal failure? Liver failure? I must speak to the cardiologist about this. I don’t like it.’

‘Well, he seems to have recovered and his condition is stable. There is nothing more I can say or do. I’m worn out. I must go home and get the children off to school. Then I must go to bed.’

We parted, and my mind was in turmoil as I drove home. The events of the night were screaming in my poor tired brain. Had it been a triumph, or a tragedy? The registrar’s confidence and Sister Tovey’s doubts were struggling with each other. That dreadful cry, like all the ghosts and ghouls of Hell, kept sounding in my ears. But it was probably not a conscious cry, I told myself, just the involuntary emission of residual air in the lower lungs escaping through slack vocal cords. He was alive, and his condition stable, that was the main thing. One should not drive after a night like that, when the mind is in such a state. It was surprising I did not have an accident.

The children restored my equilibrium. I defy anyone to get too serious when there are children around. Their laughter, their squabbles, their endless questions, their intense passion if a crayon or a book is lost, flying around the house to get a pair of gym shoes – all these little things brought me back to normal. We ate breakfast together, and I found, to my surprise, that I was hungry. Then there was a knock at the door, and a little friend arrived, then another, and the girls raced off together to the primary school down the road. I went to bed and slept, reflections on life and death eclipsed by the vitality of children.

Dr Hyem did not die, but he did not live, either. His heart had been in failure for a long time, and now all his vital organs began to fail too. The slow gradations of decay set in.

Failing circulation, caused by a congested heart, creates ‘back pressure’, affecting all the organs of the body. In Dr Hyem’s case it caused congestion of the lungs, so he had great difficulty in breathing. Fluid collected in his lower lungs, creating a bubbly, rasping sound with each breath. The fluid became infected and pneumonia developed, which was treated with antibiotics.

The back-pressure from inadequate cardiac output puts added strain on the kidneys, which were struggling to excrete the body’s waste products. Uraemia, or blood poisoning from renal failure, was kept at bay by intensified doses of diuretics.

Back-pressure put new strain on the liver, already grossly distended and striving to cope with the rising acidosis caused by diabetes. The pancreas, the gall bladder, the intestinal tract – all of them were congested.

Back-pressure forces fluid to leak out of the arterioles, the smallest blood vessels, into the surrounding tissues. They become waterlogged, a fluid swelling known as oedema. Ascites developed in the abdomen. Dr Hyem was totally bedridden. He sat there, day after day, with his legs, thighs, buttocks, scrotum, and belly swollen with oedema and ascites. However hard we tried, bedsores could not be prevented.

Had back-pressure affected his brain, or was it something else? Dr Hyem hardly spoke during the last weeks of his life. When he did attempt to mumble a few words, they were slurred and barely audible. His eyes were usually closed, but when open the pupils were dilated and fixed. The resuscitation, although quick, may not have been quick enough. Small areas of the brain may have been starved of oxygen and died during the minutes that had ticked by during resuscitation.

All the medical staff in the hospital took a great deal of interest in Dr Hyem, for open-heart resuscitation was a sufficient novelty in a small suburban hospital in the 1960s to attract attention. The registrar who had led the team became something of a celebrity. The staff all crowded around the bed, studied the notes, and regarded the machines and dials and drips with scientific interest. The cardiologist spoke to the lung specialist, the urologist to the gastro-enterologist, and the diabetic specialist to the dietician. They took brain scans (EEGs), heart scans (ECGs), recorded blood count and electrolyte balance (electrolytes were all the rage at the time), took X-rays of his chest, aspirated his lungs, measured his insulin levels and the mounting acidosis in his blood, changed his drugs, increased the changes, tried new drugs, changed them again and increased them again. They held special meetings to discuss the case; they could not have done more.

But, as the days stretched into weeks, the doctors visited less frequently and departed more quickly. Did they just lose interest, or had the passion for progress spent itself? Was there no more scientific or biochemical excitement to be gleaned from Dr Hyem? Doctors tend to regard a dying patient as a personal failure, and frequently withdraw if the process goes on for too long. Dr Hyem was dragging on and on. Perhaps the reality of a slow, lingering death was more than they could stomach.

The doctors made all the decisions affecting the physical condition of Dr Hyem, but they did not see the details of what this would entail: the reality and the humiliations endured by Dr Hyem were witnessed only by the nursing staff.

Daily hourly we treated bedsores that developed quickly because of immobility oedema and a watery diarrhoea that poured from him in the early days. The sores quickly became great, stinking holes, which we packed with flavine but which became black around the edges from lack of blood supply. The diarrhoea cleared up, and chronic constipation replaced it, which aperients and enemas could not shift, so a nurse had to remove, manually, lumps of impacted faeces from his rectum. When I read that in the day report, I hoped fervently that Dr Hyem’s sensitive mind had been so damaged that he was not aware of what a young nurse was doing to him.

Spoon-feeding a little semi-solid food was always difficult, and was frequently regurgitated, trickling out of the corners of his mouth, over which he had no control. The amount of food and fluids and the quantity of glucose in the drip had to be monitored all the time, and balanced against his insulin injections to control his diabetes.

His breathing was always laboured and painful to see. His cough reflex was seriously depressed and he could not bring up the sputum that collected in his lungs. A frothy exudate bubbled from his mouth sometimes. A physiotherapist came in to try to help him to cough by palpating his chest, but this caused so much pain to his broken ribs that the idea was abandoned. With stagnant, infected fluid in his lungs, his breath became foul smelling. Pleural aspiration was ordered to drain off some of the fluid and a cannula was inserted into his lower lungs, and a little watery stuff drained away. This relieved the pressure for a while, but it did not halt the accumulation. It seemed that Dr Hyem would drown in his own bodily fluids.

A catheter was in place all the time, and this avoided incontinence of urine, which would have made the bedsores worse, but it had to be changed every few days, and kept clean, which was unpleasant and possibly embarrassing for Dr Hyem. Unless we cleaned his mouth every two hours with glycerine, his tongue became so dry that the skin peeled off, and ribbons of grey, stringy stuff could be pulled from his throat.

The doctors saw none of this. Junior doctors sometimes get an idea of the suffering and humiliation that patients endure, and what nurses do, but a consultant seldom does. The more senior a doctor, the less he knows of the unpleasant details. None of this will appear in medical textbooks, which are written by academic and scientific medical experts, who spend much of their time in laboratories and libraries. Only nurses are at the bedside. And nurses don’t tell.

The end came for Dr Hyem because his renal failure and longstanding diabetes could no longer be controlled, and acidosis developed over a few days, first with abdominal pain, and a decreased volume of urine. Then his blood pressure dropped and his pulse became thin and rapid, his ocular tension was low and his skin became very dry. The doctors decided not to attempt treatment, and he drifted into a diabetic coma from which he could not be roused.

Dr Hyem died peacefully, five weeks after a successful resuscitation from cardiac failure.

 

FAITH

 

I need no assurances – I am a man who is pre-occupied of his own soul;

I do not doubt that whatever I know at a given time, there waits for me more which I do not know.

I do not doubt but the majesty and beauty of the world is latent in any iota of the world;

I do not doubt there are realizations I have no idea of, waiting for me through time and through the universes – also upon this earth;

I do not doubt I am limitless, and that the universes are limitless – in vain I try to think how limitless;

Did you think Life was so well provided for, and Death, the purport of all Life, is not well provided for?

… to die is different from what anyone supposed…

— Fragments from Faith Poem and Song of Myself by Walt Whitman

 

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