In the Midst of Life

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 intogrotesque 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’thave 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