|CHAPTER 19 - 1989 to 1995||
During the 1980's John allowed the pace of his life to slow down at last. While writing his book he refused offers of consultancies and requests for lectures to give himself time for the work involved and from then on the number of invitations reduced quickly. He still wrote a lot, especially letters to journals and newspapers; having more time to read gave him plenty of opportunities to notice errors or illogical statements in scientific or general articles and he still had his old need to explain and educate. His work unearthing facts and figures about pollution for his book led to a long crusade for a chemical protection board along the lines of the radiological protection board, but this raised little interest.|
John's health was still extremely good, apart from a brush with prostate cancer, which was caught in time and cured by an operation. But a new worry about himself was emerging. While he was working on the revision of his book he began to notice that he could not hold figures in his head so well: calculations about interesting problems still seemed to go according to plan but if he was looking up page numbers in an index they would somehow drop out of his head with no trace. Objects had always got lost easily; this had been a long-term feature of his life but now he seemed to spend more time hunting for things that then turned up in slightly odd places. Reinet sometimes pointed out that something she was typing had the same point repeated in different ways in different paragraphs. He began to test himself on remembering numbers and seeing if he could remember road names on his usual routes when out walking. He came to the conclusion that his memory was sometimes failing him especially on mundane activities.
Meanwhile Reinet was also noticing a change but, as it was so slight at first, it was difficult to say there was definitely anything wrong with him. He had always got lost from time to time when out on his own in the car, but now he often came home later than expected saying that he had got lost during some part of his journey. She became irritated when he didn't do things he had said he would do and also over the constant hunts for lost possessions.
For a while, their separate observations went undiscussed. Everyone forgets more things more easily from middle age onwards and most people accept that it will get worse. John had always displayed a very fine degree of absent-mindedness: there was a greater change in the quantity of his memory lapses than in the quality.
In 1989, John and Reinet joined me and my family for a summer holiday in Bordeaux. By this time, although the subject was still under wraps, there was a general awareness that John's short-term memory was not very good and it did not seem surprising to anyone that he did not want to go very far from the rented house on his own; nor that he located his bedroom by going along the corridor until he got to the wall at the end where he would hesitate for a second or two before turning back to hunt for the door he knew was somewhere around. But none of this spoilt his enjoyment of the frogs, plants and colourful butterflies in the surrounding countryside and he took photographs of several flowers that were rare in Britain.
Separately he and Reinet would confide in the rest of the family: he his belief that something was going wrong with his memory; she her irritation at his unpredictable ways together with her anger at herself for being annoyed. Eventually they began to discuss the problem between the two of them. This openness partially alleviated John's worries, but it is doubtful if anything could have made it easier for Reinet. Her organised approach to everything made it hard for her to accept the disorder caused by someone who was not always thinking in straight lines.
She was herself coping with a string of health problems anyway. During the 1980's she developed cataracts, first in one eye and then in the other. By the time they had got bad enough to merit operations, she could not face waiting another year or so in an NHS queue and she and John decided that finding the money to have the operations performed privately would be no problem. Reinet was delighted with the results, especially by the improvement in her colour vision, which she had not noticed deteriorating. At the same time she was slowly developing osteoporosis. The first symptoms she noticed were aching bones and later she suffered one excruciatingly painful crushed vertebra after another. As if that were not enough, she was also coping with arthritis: over several years her right shoulder, originally only slightly damaged in a fall, seized up, rendering her arm almost useless.
John and Reinet had formed the habit of going to see their doctor together, and after discussing whichever of Reinet's problems was dominant at the time, they started to mention John's deteriorating memory. It seemed there was nothing much to be done: these things happened to people as they advanced in years. And despite the memory lapses, John's brain was often working almost as well as it had ever done. He produced a lot of material for this book during 1989 and 1990, and was still perfectly able to explain the science behind various parts of his work to me and to produce plenty of amusing anecdotes from all stages of his life.
However, John and Reinet became more insistent that there really was something wrong and he was eventually referred to a specialist in 1991. Dr Nissenbaum liked to come to a patient's house to assess his mental state and this she did one evening. Poor Reinet had to sit by and listen to John being asked simple questions, some of which he couldn't answer correctly. From time to time she could not stop herself from joining in with hints as to the right answer for by this time she had become used to helping John through normal conversations. She was upset to hear him give the wrong date for the start of the First World War and get his age wrong by one year but was glad that he got the number of years they had spent in their present house right. He did well on mental arithmetic, as she had known he would.
Dr Nissenbaum told Reinet that John definitely had Alzheimer's disease and asked if John would want to know. Reinet knew he would. This was frightening news but John felt that same rush of relief that many people experience briefly when something serious is diagnosed: here was an official explanation of his problems; he was not imagining them. He spent a lot of time reading and re-reading a leaflet about Alzheimer's disease and complained that it did not explain what the usual cause of death was and how long it took. Somehow he had got hold of the idea that he had only a few months to live and as his grasp on the passing of time was already severely affected, he was still worrying over the same aspect of the disease more than a year after the diagnosis.
The symptoms now worsened fairly rapidly. John gave up driving after he had begun to get lost even more than ever and had noticed for himself that he was tending to dither over the controls. He had in fact only gone on driving so long because he knew he could help Reinet by taking her out and he felt nothing but relief when the car finally disappeared. He liked going out for walks but Reinet got badly worried several times when he took a long time to return and reported having been lost. At about this time, they saw an intriguing article about a piece of research on Alzheimer's patients. One group of patients had been given extra mental stimulation and another had been taken out on two walks a day. The first group deteriorated at the usual rate but the second improved slightly. John and Reinet decided that the walks must continue. Reinet was not strong enough to accompany him on the distances of which he was capable, so she tried to help him by writing out directions for a dozen local walks on cards which she fixed together in a booklet. These helped a little, but she suspected that sometimes the cards got flipped over in the middle of a walk, leaving John muddled. A better plan was to separate the cards and let him take only the one that was relevant to the day's walk. This worked extremely well. John got out for two walks of two or three miles a day, Reinet going with him for part of one when she was well enough.
At about the same time, David had the idea of buying John one of the first chunky portable telephones so that he could keep in touch with Reinet; the idea was that if John got lost he could phone home for directions. Teaching him how to use it was difficult but at last he learnt to get it out of his pocket in the middle of a walk, follow the instructions Reinet had taped to it, and ring her up to tell her where he was. By this time, sticking to a limited number of routes and carrying instructions, he was not getting seriously lost, but he loved to get in touch with Reinet in this way. She still sent him out regularly with little shopping lists and he found the telephone useful for extra instructions if he got to a shop, asked for something and was offered a choice.
The walks made John feel he was doing something positive to help his condition and he began to treat his affliction with his usual optimism. One day, he suddenly announced that he was going to fight Alzheimer's. His scheme was to work hard on remembering a few things with what brain he had left and to let unimportant data slip away. He focused his attention more than ever on his walking and six months after he had worried Reinet so much by getting lost, he was re-learning some of the routes on the cards and then leaving them at home deliberately. This was no mean feat. He was still able to explain that he had had a poor sense of direction all his life, recalling that his country walks as a child had taught him to know which way to turn at each of a series of points but only when he arrived at each one and spotted a particular shape of tree, or two paths meeting at a certain angle, so that he had never learnt to carry an overall map in his mind.
Reinet, although she had been instrumental in creating this extra lease of active life for him, could not be so sanguine about his letting other things slip. As she had to spend more and more time escaping pain in bed, she relied on him for an increasing amount of help in the house. (The main housework was still being done by Barbara Horton who came to the house every morning.) He had taken over all the washing up when he retired and later the opening up jobs in the morning, the closing down and locking up jobs at night, emptying the waste paper baskets and posting letters. As he deteriorated, he had to be reminded to do these things and as time went on, tended to abandon them before they were finished. A great difficulty for Reinet was that her and John's criteria for deciding when a chore of this sort needed doing had always been different: to her, washing up followed a meal and routine jobs were best done in a certain order to make sure they were all done. John had never expected to remember things in this way, always procrastinating until a task became urgent for some obvious reason. Now he spent a lot of time walking round the house apparently rather aimlessly. If he found some washing up waiting to be done, he would do it or if he came across a wastepaper basket with some scraps in it, he would empty it (although returning it to where it had come from was sometimes difficult). The result was that a half-finished job might well be completed later as if it was a fresh one. Then again, it might not and Reinet often tried to explain sensible routines for performing certain tasks only to become even more frustrated when he couldn't follow the new instructions.
John appeared happy enough most of the time, muddling his way through his days, wandering around a lot while his spectacles slipped further and further down his nose. But he had many moments of deep anxiety and confusion when he found that hadn't a clue what he was doing and of great unhappiness when he knew that he was failing someone. One evening when I was staying the night I came across a desperately worried John on his way to bed with his lower false teeth in his hand. "Look at this" he said, showing me the depression which was meant to fit over his gum. "You can see that it is supposed to fit into something but what is it supposed to fit? I can't find the other part." He knew it was important and should be sorted out then and there but he didn't know where to start to look for 'the other bit.' This provided a fine example of a common dilemma for Alzheimer's carers. It is so tempting to snap "it goes in your mouth you fool" and even if one can summon the patience not to do this, an appropriate response is quite difficult to think of. As I did not have to spend a lot of time with him, a patient reaction was relatively easy and he seemed to be satisfied when I appeared to spend a moment or two mulling over the problem, followed by a tentative "I wonder if it goes in your mouth?" to which he agreed with tremendous relief. He pottered happily down the passage to his bedroom, placing the teeth in the glass beside the bed as usual without a second thought.
Dr Nissenbaum made regular follow-up visits and appeared impressed by what she called John's coping mechanisms. If she asked him about some activity he now found difficult, he would either tell her about a strategy for doing it or simply say that Reinet would take care of it. He was himself interested in the fact that when he came to a task like washing up, he had to reinvent a method for doing it as he couldn't remember any previous methods but he also tended to be over confident in his assessment of the things he could do. He knew he had difficulty working out which knob controlled which ring on the electric cooker and believed that he managed by choosing one knob to turn while holding his hand above the rings to see which was warming up. In practice this did not work as warming was too slow, tempting him to try another knob, and the cooker was frequently left with all four rings full on with a pan or a kettle on one of them. Dr Nissenbaum located a drug trial for people at his stage of dementia and found a place on it for John. He took the given tablets and showed no side effects but no certain improvement either. However, it did both John and Reinet good to think that something was being tried.
Everyone who came in contact with them as a couple was impressed by how close they appeared. This was due partly to Reinet's constant efforts to keep normal life going on despite the many irritations and partly to John's gallant and tolerant nature, which seemed unaffected by the course of the disease. He worried a lot about Reinet's pain and would have done anything to help. He always leapt up immediately whenever she did ask for something and was upset if he found he had forgotten to do a task or not done it properly. When we obtained a wheelchair for Reinet, he could hardly wait for the first opportunity to take her out in it and pushed her along the pavement of Vernon Road with great pride.
As 1992 went on things became progressively more difficult. Reinet had found that the severest pain of a crushed vertebra was over after six weeks. However, as her osteoporosis progressed, one fracture followed another so that she had hardly any respite. At the same time, John's condition had not stabilised just because he had fought it for the last year; it was getting progressively worse. Reinet frequently found that reasonable discussion did not have the effect of making him remember to do things but that becoming angry with him did. He so hated upsetting her that he took a lot more notice if she was cross with him. But expressing anger was so alien to her nature and to their relationship that she loathed communicating with him in this way and if she saw tears come to his eyes she felt deeply guilty for having shouted at him.
By the spring of 1992 things were horribly difficult. Jane, David and I visited when we could and tried to help but we each had families and jobs and so the visits, though frequent, were for periods of a day or two only. Jane, living the nearest to Birmingham in Hereford was able to visit the most as she could travel both ways in one day, and even Kate, reading Medicine at Birmingham University, called often despite her own poor health. Both David and I had suggested the previous summer that the couple move to live nearer one of us, but Reinet could not face the idea of a move, which was quite understandable in her frail state. Reinet was hospitalised for a few days to try to diagnose the latest pain in her back, and John managed to look after himself, more or less. Kind neighbours gave him an evening meal and he even managed to order a taxi each day in order to go and visit Reinet although the hospital had to accept that this wasn't necessarily at visiting times. After a number of investigations, Reinet was told that there was nothing whatsoever that could be done about her condition but that she would be prescribed progressively stronger pain-killers.
This was depressing news and Reinet began to protest that she could not look after John as well as herself. On David's suggestion, she tried a short time in a nursing home, to see if that might be an answer but she hated it - and worried about John. Then I tried organising permanent nursing at home for the two of them which turned out to be surprisingly easy. The first agency I contacted provided a woman to come round for a few hours a day to prepare their evening meal and help them both with washing themselves and getting to bed. Then, when this, to our great relief, proved acceptable, David asked for full-time care and the agency supplied a careful and caring woman called Sylvia who moved in to take over the running of the household and to take care of both John and Reinet.
This did make life easier but nothing was going to make Reinet really happy again. She hated not being the hub of the household, not bottling the fruit in the summer, not bustling about doing a thousand things and she was in any case in serious pain: even the morphine she was now taking didn't really clear it but left her dopey and bored. As her spine shortened, her internal organs were crushed into a progressively more confined space and she was always uncomfortable and frequently very constipated. She was now completely alienated from John and would have liked never to have to see him again - unless he could be returned miraculously to his former condition. At the same time she wouldn't hear of his being taken into a home. Here is the common dilemma of the middle- aged offspring of elderly parents: we suggest this and offer that and all is refused.
Gradually Reinet decided that she didn't want to be around any more. A final decision that she was going to end it all had the effect of lifting her depression for she was now decided on a course of action. On a day at the beginning of November, she completed the Times crossword by tea-time, had supper as normal and checked that there was enough cheese in the fridge for everyone's lunch the following day. She then took a massive dose of previously hoarded morphine tablets and went to bed.
Her system must have been habituated to morphine or perhaps the workings of her gastro-intestinal tract were too sluggish for the overdose did not work. She slept all the next day but subsided into complete disorientation soon after waking up. While people were seeing to her, John sat in the sitting room worried but not knowing what to do. Eventually he moved his chair nearer to the door so that he could get there more quickly if he was wanted for anything.
Although Reinet was not dead, her mental powers were greatly reduced and she did not appear to recognise people, notice where she was, track the passage of time or feel any more pain. She was admitted to hospital and died of broncho-pneumonia ten days later on the twelfth of November, with Jane and her son Luke at her bedside.
As soon as Reinet was in hospital, David took John back to Colchester with him. The speed of events left John confused, and he did not seem to notice the loss of his wife at all. When David and Maria gave him Reinet's wedding ring to wear on a chain, he was soon telling people that it was his mother's ring. Later he produced the story that he had been married but that his wife had died tragically young following a painful affliction of the ankles.
David and his family then threw themselves into making a home and a comfortable life for John starting with a sacrifice on David's part: during the months prior to Reinet's death, he had been pursuing an application for a professorship at a small Australian University and it was clear that he was now on a short shortlist. He wrote to the Australian immigration offices informing them that his plans now included a parent with Alzheimer's disease and, as he had expected, they lost interest in welcoming him into the country. A strong sense of duty and the memories of all that he had learnt from his father made David quite clear that he wanted to look after John for his last few years. He remembered John talking about the treatment of old people in China, where ageing parents were kept in the homes of their sons or daughters and increasingly marginalised as they gradually faded away. David thought this would be a suitable way to guide John's last years.
There had been a lot of family discussion about caring for people with senile dementia in houses other than their own following John and Reinet's disastrous attempt to look after Heaver in Birmingham towards the end of his life. Both John and Reinet had been of the view that moving him had been wrong and no one was to move them if they were in that state. David believed that the problems they had encountered had been specific to his grandfather's inability to learn his way around and that if he put some effort into teaching his father, the same problems would not occur. So he labelled the rooms in his house on the outside of each door in large print. He made sure that John was shown the way to the various rooms frequently in his first few days and he and Maria taught him some walks around the surrounding streets. Both David and Maria put a lot of effort into finding occupations for their guest. David was very keen on instituting a family walk every Sunday afternoon and managed to keep this going in spite of some opposition from his children. John thoroughly enjoyed these walks in the countryside surrounding Colchester and David took photographs showing him gamely dealing with stiles and wading through mud. Maria tried to find him day-to-day occupations and, remembering his love of all sorts of handicrafts, obtained some plywood and set him up making jigsaw puzzles. He could still hold the fret-saw straight, the tricky bit if pieces are to slide past each other whichever way they are fitted, and followed the lines Maria pencilled for him accurately. David decided that John should continue to wash up as he had in Birmingham but found that this only really worked if he supervised the work assiduously. He made this supervision easier for John to accept by typing out a list of instructions that were kept near the sink giving him the chance to get things right before being corrected.
There was always the difficulty of how much freedom to allow him. If asked, he would claim complete confidence in his ability to bath himself and look after his teeth, but as time went on it was obvious that he did need help with these rituals. John seemed to accept that someone might appear in the bathroom and start to wash his back while he was in the bath or turn up and take his false teeth from him to give them a scrub. One day Maria found he had overrated his abilities when she came into his bedroom and found a lot of blood around: John had decided that he had a corn which needed trimming, had found a razor blade and set about his own foot, cutting both his fingers and the foot. In his previous life he had been extremely dextrous at this sort of job, performing minor surgery on splinters, blisters and corns for himself and for members of the family, but this skill had now gone. Then he started to put on serious amounts of weight: something he could still do for himself was to go out to a shop and buy chocolate but he was not aware of how much he was eating. When David and Maria tried to interest him in keeping his consumption of chocolate down, he started to eat it secretly in his room.
The day-to-day care fell mostly on Maria and it took some hours out of every day. Of course she found this tiring and felt that she had very little time for herself as she was also caring for her two sons and Peter had to have daily treatment for his muscular dystrophy. But despite these difficulties she kept up a high standard of care for the old man, overriding David's idea of allowing him to fade away in a corner. She showed him photographs of the family regularly and talked about them by name to keep them in his mind and routines were set by which I would visit from time to time and would talk to him on the telephone frequently. Although he lost track of the relationships that bound him to people, he still reacted with great pleasure to these telephone calls. During one of them he asked me to marry him! Funnily enough I wasn't particularly surprised by this: I knew he was responding to me in a very loving way, but I also knew that he wasn't too sure who I was and definitely had no idea of the difference in our ages.
John never complained of physical discomfort and so when, a year after he arrived in Colchester, he refused to get up one morning, it was clear that he was really ill and David called the doctor. John was hospitalised immediately and underwent surgery to remove a piece of twisted bowel. Initially he seemed to recover well, but after another day or two he became seriously ill with a chest infection. It looked as if this was going to be the end but after almost a month he started to recover at last both from the effects of the operation and from the pneumonia. However, his dementia had worsened and he had become doubly incontinent. This last made Maria and David know absolutely that they could not care for him any longer.
Maria found an excellent residential home only a few minutes cycle ride from their home and a room was booked for John. Money was not a problem at all: John's pension was sufficient to cover the high weekly fees. David and Maria continued to visit John daily for all the time he was there but were hugely relieved that they did not have to take charge of all his physical care. Now that no more was expected of John than to sit in a chair and move to his bed, the lounge, the garden or the dining room when told, he seemed to suffer less from anxious confusion although even in his reduced mental condition, he must have been bored as he had been unable to read for some time and could not follow a television story. His descriptions of the things around him made it clear that he was often perplexed by his surroundings but still trying hard to make sense of everything: he might stare at the ornate frame to a mirror in his room for some time with a puzzled frown on his face and then say 'what is that?' He enjoyed his food, but still knew that he disliked both jacket potatoes and salads, both of which he had always avoided eating in the past.
The downward trend continued and he reacted less and less to visitors. Celia and I both visited when we could, but wondered how much good we were doing as it was so difficult to involve him in conversation: I found that the only subject that would reliably extract a positive reaction from him was Pete, the dog he still remembered from his childhood, and although he didn't seem to mind if I started and re-started this conversation every five minutes, I couldn't bring myself to simply repeat the same words for my entire visit! Celia and I eventually had the bright idea of visiting John together as I had noticed a greater reaction from him when two people were in the room talking to each other. This strategy worked splendidly: we talked loudly across John (conversations with Celia are always loud and cheerful), and he became bright and alert and joined in with lots of agreeing noises and exclamations of interest; he even managed to rustle up a few relevant remarks.
On the fourth of March 1995, the home put on a special tea to celebrate John's birthday. But he appeared unwell and was unable to eat his cake, a serious symptom as he still had a very sweet tooth. By the next day he was quite ill and appeared to be in much the same state as he had been when he had had the twisted bowel problem a year and a half earlier. David, Jane and I had had some tentative discussions a few months before, which had resulted in a letter to John's doctor saying that we did not think that he should undergo further surgery for any future condition. Despite our agreement over this letter, now that John was ill and in pain we still made numerous telephone calls to each other to try and work out our collective attitude before it was too late for any changes to our former decision. But it turned out that we were all firmly agreed. John must be allowed to go naturally, and this is what he would have wanted: no heroics, he and Reinet used to say; we neither of us want to have our lives artificially extended by intensive interference from the medical profession. We were lucky that no one tried to bypass our decision once we had made it; the likelihood of his surviving another operation must have been vanishingly low anyway.
Thankfully, the pain did not last for long. John slipped into a coma and was kept clean and warm in the bed he had known for the last eighteen months, with a sweetened morphine medicine dripped into his mouth if anyone thought he looked uncomfortable. In the small hours of the sixth day after his eighty-second birthday, he died peacefully with David at his side.