In the Midst of Life (28 page)

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).

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.

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.. .’
^*

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.
^**

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.