In the Midst of Life by Jennifer Worth
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 improve
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 un
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.