By Iris Winston
I’ve done my mourning.
Although my husband of 57 years is still alive — barely — he is far from the man he was. The kind, considerate gentleman (in both senses) is no more. His great wit and sense of humour have faded into the distance. These days, I can only rarely have any type of meaningful conversation with the remnants of the highly intelligent and insightful person he used to be. The handicapped and often depressed individual hunched and sleeping in his wheelchair or hospital bed is nothing like the straight-backed man who was once my biggest support.
I understand that death and mourning do not move in step when the path to the final goodbye is one of gradual decline. Along the way, both invalid and caregiver must accept so many painful changes, as well as becoming accustomed to the knowledge that things can only go downhill.
Little wonder that the shrinking shell of the man who is left finds life a burden. He has said on several occasions that he is “ready to go” at any time.
As hard for me to take as the dimming of his physical and cognitive ability is the drastic change in his personality. Instead of caring for others and being interested in the world around him, he is turned inward, concerned almost exclusively with his needs and his bodily functions. He also expects any requests (more often demands) to be fulfilled immediately — another departure from the way things once were.
He is rarely interested in eating, even if he asks for a particular meal or favourite food of the past. Because he spends so much time in bed, I usually feed him to minimize spillage. At this point, if he takes five or six mouthfuls, it seems something of a victory to me. Most of the time, he asks for liquid meal supplements or soup in a cup, aided by a bent glass straw, in part because they are easier for him to manage and in part, I think, because they help him to preserve an iota of dignity.
In fact, there is very little dignity or privacy left for anyone as severely handicapped as he is. Without the significant help he and I, by extension, receive from personal support workers, as well as home visits from a nurse, our family doctor, paramedics and a hospice visitor, we could no longer manage. He is painfully thin and weak now and has trouble turning in bed without support. He usually has to have bed baths because only one PSW is strong enough to get him to the shower or toilet. I used to be able to manage transfers from bed to wheelchair relatively easily with the help of an electronic patient lift. Now they are worrisome because he has so much difficulty positioning himself securely in his wheelchair at the end of the transfer. This is now less of an issue than a couple of weeks back, because he is more comfortable spending most of his time in bed.
The usual pattern until last week was for him to be in the wheelchair for breakfast — usually a liquid meal supplement, a few sips of coffee and juice, plus his morning pills — after preparing for the day.
Shortly afterwards, he would ask to be returned to bed. He generally falls asleep immediately, slumbering for the next two hours. He wakes for a little lunch — with luck of the few-mouthfuls variety, more pills — then dozes for most of the afternoon.
Recently, he has asked to get up in the late afternoon, even trying to swing his legs over the side of the bed. It is difficult persuading him that he can no longer manage to do this because he cannot sit up without support and could fall off the bed. He forgets his current situation and his handicaps and says he has to be up to write or read.
Either activity has become a problem. He suffers from Lewy body dementia, a form of dementia that differs from Alzheimer’s disease because it is not consistently progressive. At times, I still catch glimpses of the once brilliant man he used to be. I remind myself of that man via a studio portrait taken years ago and the covers of books and plays he wrote in his heyday as an author and educator. More often now, though, he is irrational and in the midst of a hallucination or back somewhere in distant memories.
Frequently, through the night, he has conversations with imaginary people, often medical practitioners, he might have consulted in the past. He sometimes begs to be taken home, forgetting he is at home and in bed. At other times, he believes he is involved in a business meeting or carrying out a major research project. He also regularly shouts for help from the police or his favourite PSW or directs his anger towards me, sometimes claiming that I hit him or tie him up to force him to stay in bed. I do neither, of course, and in his lucid moments he knows that, Then, he thanks me sincerely for looking after him and keeping him at home and away from long-term care in an institution. The other night, as he was settling down to sleep, he said “God bless” and gripped my hand, in the way he once regularly ended the day. Sadly, touching moments such as this are becoming fewer and the difficult patches through evenings and nights more frequent.
Along a parallel path, his physical weakness is growing worse. He cannot stand unsupported at all now and his legs look horribly wasted. In addition, Lewy body dementia is related to aspects of Parkinson’s disease. As well as hallucinations, memory loss and cognitive decline, it includes such symptoms as tremors and difficulty in manipulating small objects. Therefore, he finds using a pen nearly impossible. (He always wrote longhand and chose to avoid computers and other electronic devices during his writing years.)
A few months ago, he gave up on playing Scrabble, a pastime we had both enjoyed. He had trouble manipulating the letter tiles and could no longer employ strategy in word placement. Most of his extensive vocabulary was still there, but even with that, his enjoyment of the game had gone. It seemed that all that remained were reminders of lost skills and inability.
Reading had also become a major frustration for him. Once an avid reader, he rarely picks up a book, magazine or newspaper now. That, he says, is because his eyes have grown dim and he cannot get used to his prescription reading glasses. He had eagerly awaited the arrival of what he assumed would be the magic cure and restore his sight. It was not so and that left him deeply disappointed and angry. He soon gave up on the glasses, seeming to view their inadequacy as one more example of the world turning against him.
The most recent step along the downward slope appeared yesterday when the nurse came to dress a raw patch on his lower back. He hadn’t complained of pain, but his skin is so fragile now that almost any awkward movement can cause a tear. Previous wounds have eventually healed, although they never reach the level that they were before the skin break. That, apparently, is generally true of aging skin. On this occasion, the nurse was particularly concerned about one discoloured spot that seemed about to break open. She said it might be a Kennedy ulcer, a type of incurable sore that heralds the end of life is near. It differs from pressure or bed sores because, she explained, it does not heal, signaling complete skin breakdown. She will be back tomorrow and should know then whether it is a terminal ulcer or a pressure sore. Either way, she will re-dress it and make sure that Stewart is as comfortable as possible.
At this point, there are no longer any medical appointments outside the home. A couple of months ago, we were told there was little reason to continue with routine dental appointments, although a dental visit could be arranged if it was a question of putting an end to the pain of a tooth that needed to be filled or pulled.
The annual trip for an ultrasound to check a vascular issue — an aneurysm of the aorta in the abdomen — also became pointless, as did a trip to check that his pacemaker was functioning as it should. The clinic has provided a device so that it can be checked remotely, but if there were a problem with the pacemaker, I’ve been told it is more likely that it would be disconnected than repaired because my husband had signed a “do-not-resuscitate” order some months ago. In any case, if any medical problem were discovered, it is likely that he would be too weak to sustain any surgery. Why cause discomfort or unnecessary effort, when there is no chance of a cure?
I know that the end-of-life story cannot be happy. It can only attempt to keep pain to a minimum and provide anything, however small, that might bring a moment of pleasure.
Long ago, my husband and I said that we would choose to die at home if we could. At this minute, I am physically healthy enough to keep that promise, as least while the long list of helpers supporting us remains. If my strength gives out or my husband requires two people to help him shift position, as has been the case this weekend, I am keeping in mind the possibility of hospice care for his last days.
But, for today, I will carry on as we are, very grateful for all the help I receive and that I can still carry on with the activities I care about. I’m still able to take time to write, to play duplicate bridge and spend time with friends. My dog and I go walking three times a day. I now have my daughter and son-in-law close at hand. And, although my son and family are at the other side of the country, I talk to him every day.
I miss the husband I had when he was a whole person. I hope that he does not have to struggle on much longer as he declines almost daily.
The hardest parts of the grief and mourning are over for me. For the rest, I hope I can take refuge in happier memories of days long gone by.
*****
This morning, my husband did not wake to drink his early morning cup of tea. I saw that he was breathing quite steadily when the dog and I left for our walk. When we got back, our favourite PSW and regular nurse were waiting to tell me that my husband’s long journey was over. They had looked after him, washed him and prepared him for the last stage, probably as relieved as I was that he had died in his sleep without further pain.
Yet, even though he and I knew his end was imminent, it was still a shock when it actually happened.
I am glad he died at home as he had always wanted.
I did not cry that day or for the days afterwards while I was dealing with the disposal of all the mechanical aids he had needed. I did not cry when I sorted through his clothes or when I dealt with all the paperwork that is part of the bureaucracy of death. My tears flowed when I found a wallet that had been missing for years. Made for him by one of his adult students when he was teaching in Africa early in his career, it had been the symbol of a very happy time for him.
I wept, not in mourning, but because I wished he had been with me to see it. I know it would have brought him a little joy at the end.
