Nicola Liu lays out the map of her life | Issue 21 | 2022
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Words by Nicola Liu, and others – in Australia, Canada, Europe and Africa
In his 2002 book The Forgetting, David Shenk says that Alzheimer’s is “death not by a thousand cuts but by a thousand subtractions”. Anyone who cares for someone who has dementia, anyone who has lost someone they loved to that strange, sad condition at the shore’s edge of life, will know what he means. It all falls away, gradually, over time. The mind becomes entangled; the memories are extinguished; conversation moves from repetition to confusion to jumble to silence; the will to move, the will to eat, the knowledge that breathing in and breathing out is required in order to live; it all falls away.
So, too, do the worries and cares and burdens that life holds. That is the great blessing of dementia, its consolation: whatever caused you grief or pain will disappear, not at first, but toward the end.
Cancer used to be a taboo subject. Dementia is only now creeping out of its place in the shadows. The demented mind speaks of folly and the madhouse, of family shame and, most of all, of fear. Now, we can dispel that fear quite simply by recognising that dementia, which can touch any of us, is just one of the ways in which our lives may end. It is not inevitable, it is not “what happens when you get old”, but it may happen and it is part of life and death.
There is no cure. And it takes time to progress, time enough for “a thousand subtractions” to occur. And we really don’t understand, at the outset, what is going to happen, and why. All we know is that at the end you die, and before you die you have forgotten everything. Therein lies the fear.
Will the facts provide any solace?
In 2010, 35.6 million people had dementia worldwide. This number will nearly double every 20 years, to 65.7 million in 2030, and 115.4 million in 2050. Much of the increase will be in developing countries.
Dementia is ‘a syndrome or umbrella term associated with ongoing decline of the brain and its abilities’. It affects thinking, memory, language, mobility, motivation, emotions and behaviour. There are more than 100 types of dementia: Alzheimer’s (the most common); vascular dementia; dementia with Lewy bodies; fronto-temporal; Korsakoff’s syndrome; and so on.
Does it matter what type of dementia one has, when the paths of each cross over, meet and come to one indistinguishable end? Perhaps not; but if you are the child of a parent who develops dementia, you may start to think, will this happen to me? What can I do to ward it off?
Alzheimer’s disease involves the atrophy of brain tissue, a build-up of amyloid plaques and atrophy of fibres along which nerve impulses are transmitted. The risk of it being passed down through the family appears low (only 15% of cases are thought to be familial) but more research is needed on genetic predisposition.
Alzheimer’s disease is more common in females (a ratio of 2:1).
Vascular dementia is the result of tissue death (through oxygen starvation) caused by a thrombosis or embolism. Nerve impulses can no longer travel along the cell fibres in the brain. A mix of blood pressure control (diet and exercise) and treatment with anti-coagulants can reduce risk factors.
People who suffer from Parkinson’s may develop dementia with Lewy bodies. This form is also linked with depression and sleep disturbance.
Korsakoff’s syndrome is caused by a deficiency of vitamin B1 through poor nutrition related to alcoholism.
“All the world’s a stage”, says the melancholy Jaques in As You Like It. He talks about the seven ages of man: the infant, the schoolchild, the lover, the soldier, the justice...and then the sixth age, which shifts:
Into the lean and slippered pantaloon
With spectacles on nose and pouch on side
His youthful hose, well saved, a world too wide
For his shrunk shank, and his big manly voice
Turning again towards childish treble, pipes
And whistles in his sound
Last scene of all
That ends this strange eventful history
Is second childishness and mere oblivion
Sans teeth, sans eyes, sans taste, sans everything.
Shakespeare got it right, of course. There are three (very approximate) stages to dementia, and for part of that time it can seem that the adult has become a young child, in need of care, without self knowledge or inhibition, living in the Now. The passing from one stage to another is blurred, and for the observer often only becomes clear when there is time later to reflect on what happened.
The early stage
Early signs include increasingly poor judgement and decision-making; the inability to manage a budget; losing track of the date or the season; difficulty holding a conversation; and misplacing things without knowing how to retrace your steps or what to do with the thing once you find it. There may also be signs of depression and trouble sleeping.
The middle stage
Memory loss steps in. They may lose track of why they are where they are; and where they should be. They may revert to a time in their past. Conversations lose their structure; they may repeat questions many times over, or listen to the same topic with no sign of having heard it before.
Recognition of names or faces starts to go. Inhibitions disappear and behaviour changes; they may try to undress in public; they may get aggressive and behave in a way that is ‘out of character’. Habits die as memories and associations fade; so smokers no longer smoke, drinkers no longer drink and readers no longer read. Photographs that once might hold their attention may be torn up or discarded. They may not remember which item of clothing belongs to them, or care. Incontinence sets in.
Standing up, getting out of a car or a wheelchair, walking any distance will take time and patience.
At some point you will have to decide whether they can stay in their own home, move in with a family member or be cared for in a residence, which will have locked doors.
The late stage
Mobility goes. They stay in the chair and then the bed as they forget how (or why) to use their muscles to create movement. Incontinence gets a grip. They eat when fed and toward the end they no longer eat, and no longer swallow.
Speech is first incomprehensible and then it stops.
Regression to infancy follows a recognised path. The smile stays almost to the end.
The moment of death slips in quietly.
What can be done? The ageing demographic in many parts of the world is driving research – by 2050, people aged 60 and over will account for 22 per cent of the world's population, with four-fifths living in Asia, Latin America or Africa – but we are so far behind in our understanding that the first thing to do is to support any research programmes that are exploring the progression of the disease and the means with which we can live with it (or prevent it) (or cure it).
We can look at our own lives, of course, and change a few habits, pump some more oxygen toward the brain.
Avoid fatty foods. Eat foods rich in antioxidants, folic acid and vitamins B6, B12, C and E. Don’t drink too much alcohol.
Stay active, physically and mentally. Don’t let the idea of education stop at school or university. Read. Write.
Get plenty of sleep.
Learn languages or take up music; and keep practising.
Spend time with people. Enjoy yourself.
Don’t injure your head.
We cannot fathom the extent to which someone suffers through the course of this disease. We can do all in our power to help them.
In a recent talk, Dr Patricia Macnair (a specialist in elderly health care) listed a series of practical measures to sustain independence and dignity, such as adapting the home to make it safe and easy to move around; using diary and timetabling systems, as well as labels and reminder notes; putting one’s affairs in order and making a will. Dr Macnair also talked of the comfort that stimuli such as music, scent and touch can bring, as well as continued conversation and signs of respect.
We don’t know what precise difference someone’s loving presence can make, but imagine the absence of a loving presence and in its place indifference or callous treatment, and the thought makes one shudder.
It will help to take the hand of someone who has dementia and gently stroke it. It will help to take your child with you when you visit their grandparent who has dementia.
Some creative thinking will undoubtedly help. There is a need for imaginative, empathetic acts. But of what kind? Could we marshal the creative skills of architects and designers – in the same way as happened with the award-winning Maggie's Centres in the UK, designed to lift the lives of people who have cancer? ‘Living Well with Dementia’ was a recent Design Council initiative in the UK, out of which came ideas for ‘dementia dogs’ trained to assist people; and fragrance release systems to stimulate appetite.
We take such care when babies are born to fill their world with love and warmth and colour, music and any other good things we can think of. Why can’t we do the same at the other end of life, and fill those final years with the palpable sense that you are cherished?
Circumstances get in the way. No money, no time, no real knowledge (we need research), no conviction, no nerve, no imagination, no resources.
They are trying something new in the Netherlands. The gated village of Hogewey, set up 20 years ago, appears real to its inhabitants (all of whom suffer from dementia) but it isn’t; it’s fabricated, to make them happy. Shopkeepers, restaurant waiters and household servants are trained carers, acting out a part. The villagers live in different homes, whose furnishings and daily routines recreate the world that their inhabitants came from: the aristocracy; the working classes; a world of culture; homemakers; the deeply religious; and so on. There are four carers to each resident. The cost (which is borne by the state) is high and the waiting lists are long.
I was sceptical when I read about Hogewey; it sounded nightmarish, reminiscent of Sartre’s play No Exit. Then I began to choose which of the model lifestyles I would want to have played out for me, and I thought about people I have known with dementia and how it might have suited them, and by the end I thought, let’s try it, what have we got to lose?
The end of life has to matter as much as its beginning. Palliative care is a specialty area for medical professionals which could add much to our knowledge of what can be done if we overcome our fear of dying.
“Defeating Alzheimer’s”, David Shenk says, “will be like defeating winter.” “Once it is gone, we’ll face less hardship, but we’ll also have lost one of life’s reliable touchstones.” He describes the disease, its slow drifting down through a gradual “collection of ends”, as “our best lens on the meaning of loss”, a further sign of our essential, shared humanity.
It is unbearably hard to witness the progression of this disease in the mind and body of someone you love. The people who gave interviews for this article have all experienced this, and I thank them for telling their stories here.
When my mother was diagnosed in the 1990s with a particular form of dementia, we were told that the diagnosis could only be confirmed through a post mortem. Ten years later, no one suggested a post mortem and I wouldn’t have wished to inflict any further suffering on her.
At the start, I had no idea what was happening, why she was so confused. We went through four residential homes and the locked wards of three different hospitals. We sold her home to pay for her care. We took her on outings until she could no longer walk. We gave her gifts until they no longer made a difference. We fed her food until she would no longer eat.
People asked after her but no one outside our immediate small family went to visit; maybe they thought there was no point if she would not recognise them. I kept going, but then she always knew who I was or at least knew that someone she loved and who loved her was there again (even if she couldn’t recall when I had last been there). At the end, her smile was still her own true smile, and the last abiding memory that I took from her last days was of love, honest and true.
Nan would always look very proper. She always got her hair done and she’d get her nails done every few weeks. There’s no way she’d wear her house clothes anywhere. Then she started to let her hair go grey. And she stopped going into town.
It felt very gradual for those first few years, but now, when you go to visit, you worry that she’s not going to know who you are.
Her and my Pop moved into an aged care home two years ago. Nan couldn’t cook any more, she couldn’t make you a cup of coffee, couldn’t be trusted to turn off the oven. Pop is frail as well. He’s in his late 80s. And now they’re in the home and it’s the best place that they can be.
There’s a nursing home on the hill; that’s where you don’t want to be.
She still gets her nails done. The manicurist comes up to the home.
She can still walk. She just can’t remember how to talk. Sometimes it’s just breath, all breath. Unless it’s song. And if it’s song, it’s very deep. It’s suddenly loud and deep. It’s the same song every time.
They were going to create a doorway between their two rooms, but after the first few weeks Pop asked for that not to be the case.
Nan pulled the tablecloth off the dinner table at the home one time; Pop gets embarrassed, which I can understand, especially knowing how Nan used to be.
They’ve had a lot of pain throughout their life. They’ve lost a few children. Things haven’t always gone according to plan. I think that’s the one benefit of dementia for Nan. She doesn’t remember the painful “dates” any more.
She used to have a phone in her room so we could call her. We can’t any more. She doesn’t know what to do with it. So we only have contact when we actually visit, and she’s way out in the country. It’s a six-hour drive; I’ve done that trip I can’t tell you how many times.
Nan’s been getting quite upset recently, teary, every day. I don’t really know how to help that. It’s like something in her core is upsetting her.
There are so few rural doctors in Australia that we can’t actually get a doctor to them when we’re concerned about them.
Pop has no one else he can really talk to about it. I always call but it’s difficult to have that conversation with him each week; there’ll always be a new example of what Nan’s done. You just have to listen and you just have to have that conversation. Your advice each time might not change. There may not be any advice.
I’ve accepted it. It’s a part of our lives. It’s not a really terrible thing because my Nan still knows who I am. Her eyes still light up every time I walk into her room.
Teneille Rennick’s grandmother died in the week RE went to press.
I never thought of dementia as something that could end your life, but I've learnt over the last week that it can. In the end, my darling Nan couldn't eat or drink or talk, or she didn't want to. Her mind was shutting down and it all happened very quickly. She was the most beautiful Nan a kid could wish for.
My mother-in-law has Alzheimer’s and my mother advanced Parkinson’s. My stepdad, who died last year, had dementia from mini-strokes.
He was a professor of philosophy, a carpenter, an electrician, a man that knew a lot of things about a lot of things. He was a brilliant man.
It started when he had a minor traffic accident, when he was 83. They gave him a road test, which he said went “fine”. Then the instructor said, “So you didn’t see the stop sign? The school bus with its lights on?” and I thought, oh, there is an issue.
I probably didn’t want to see it. He’s a man I admired so much. I could not accept that he was anything less than brilliant.
It took me two years to convince him that my mum had to be placed because she needed 24-hour nursing care. He had this sense of duty that we rarely see today.
He would do things like show up at her residence at three o’clock in the morning, not knowing where he was.
He started writing down things that he knew he needed to do. This was the cruellest period, because he was aware of the disintegration of his mind and this was just killing him.
This was the time where I wish I’d given him more time. I spent weekends. And my wife was able to spend a lot of time with him. We hired someone to cover the days when we couldn’t be there.
He just adored me and I adored him.
A place opened up with a room right beside my mum at the residence. They gave us that room on a compassion basis.
It was funny and not funny. One time, the nurse wheeled in my mum and said, “Isn’t your wife beautiful”, and John responded, “Beautiful, yes; wife, no”. He didn’t remember having a wife.
People who think that it doesn’t matter if you don’t go and see them because they’re not there, it’s not the same person – it’s such a mistake.
He was never happy in the residence. He didn’t want to be cared for by anybody.
He stopped, basically, didn’t want to eat. This was not life to him, and he knew it.
I was on my way to Calgary; when I landed, my wife called and said that he wasn’t doing well, and I went right back to Montreal, and I spent the week with him. It was wonderful.
They were very good on the palliative side. We knew it was ending and they let him end it there, with us, in a certain degree of intimacy.
It was a lunchtime on a Saturday. It was just beautiful. It wasn’t ugly. It wasn’t sad. We weren’t dispatching him, we let it happen naturally.
When you have dementia, people say that that person is no longer there. He was there. His essence was there.
I would never deprive someone of the opportunity to say goodbye.
The Parkinson’s that my father has is basically loss of movement, the mind slowing down. The best word to describe it is withdrawal.
He was diagnosed 15 years ago and is now in the terminal stages.
It’s really difficult to find out good information. I think you only do that by talking to people who’ve been through similar circumstances. There’s no useful information whatsoever on the internet.
He’s been in a nursing home for 18 months. The staff are amazingly kind, but it’s almost as though they treat their ‘guests’ like pets. My father’s name is Malcolm. “All right, Malc. How are you, darling?” There should be more dignity.
On his 80th birthday, he was asleep the whole day.
Does he know who I am? No, I don’t think he does, to be honest. Does that upset me? No. It doesn’t upset me at all. The only time I really got upset was when I first saw him in a nursing home.
I think we owe a duty of care to our families to look after them at home for as long as we can.
It’s very hard on people who are around. You’ve got this continual nagging guilt that you’re not there with the person, and in reality the person probably wouldn’t know whether you were there or not.
My father hasn’t said anything to me for about six months but very occasionally he smiles, and his face lights up, and you can see the personality that he used to have.
He’s such a lovely man. A real sweetie. And a prodigious intellect.
I was abroad on business when he was moved into the home and apparently for the first week it was absolutely horrendous. When I went to see him, I walked into the room and he was lying curled up in a ball on an unmade bed.
There’s a huge spectrum of people in this home. There is my father, who is basically sane but has dementia, if you can term it that way; and there are people who are literally screaming every five minutes.
Don’t get me wrong, there’ve been some quite funny moments. I walked into their common room and there were three old ladies sat with those old dryers on their heads, and they were all of them just beaming at me, with no teeth, and I was thinking, my God, I just cannot see myself in this place; when I’m old, please take me out and shoot me.
My father has a very sweet tooth, so every time we went to see him we’d buy him some cakes. I put this custard slice on the table and went into the kitchen to get a plate, came back, and he’d already eaten half of it and the other half was in his top pocket.
Laura Shumiloff's father died shortly after this interview.
It’s a long and short story at the same time and was extremely painful.
My grandfather showed signs of dementia which worsened quite quickly. He confused days and nights, he would force my grandmother to wake in the middle of the night to prepare breakfast; he would get lost in his own neighbourhood; and he stopped recognising my grandmother.
He was 89 when it started. When he died he was 92 and my grandmother was 90.
It's when he stopped recognising my grandmother that things became very difficult. When he was young he was held captive during the Second World War, and at the end of his life he started seeing things from the war. So he was at home, there was this strange woman he didn’t know, and she was potentially German, and she wanted to hurt him; it was a complete mess.
It became extremely aggressive. What was terrible about his story is that we think that my grandmother hid those things from us for a long time because she didn’t want to worry us. I mean, she had been with her husband for 70 years; I think she wanted to protect him.
And he ended up killing my grandmother by accident. It’s a very, very sad story.
The day before, my mother had called their doctor and asked him to have my grandfather committed. My grandmother wanted to wait another day. And that was too late. The accident happened that night. So my mother felt an immense sense of guilt.
And then my grandfather died a couple of weeks later.
He was sent to the prison hospital. We think he must have missed some of his very important medicine and probably have died of that.
My parents were the only people allowed to visit him. My mother found it really terrible because he was 100 per cent back to the war, back in the prison camp.
He did so much. He had travelled. They had three children, and grandchildren. He was full of life. At the age of 80 he took a computer skills course because he wanted to go on the internet.
After he died, we were clearing the house and we found small notes about where to find things or the way to the shop. But he was able to talk and to draw and to cook.
We were kind of aware without being aware.
My mother resented my grandparents’ family doctor because she said he should have done something, he’d known them for 50 years, he was their doctor, he should have done something.
What struck me at the time was the little knowledge we had. Later, I couldn’t find the equivalent of the Alzheimer’s Society in Belgium. Actually, I don’t know what’s going on about dementia in Belgium.
My grandmother was from the old school. I think that she really thought that she would be able to handle it. That’s something that I’ve learned. Never assume that you can handle it on your own. If you are worried about something, seek help.
People would see my father doing odd things and we did not know how to explain it away, because it appeared that he was mad or demented. We did not know how to deal with it.
When people asked us, we said he had suffered a stroke and as a result had suffered brain damage. That was what we were putting out there to the community to explain his condition.
It was clear that his brain was deteriorating, it was slowly wasting away, but why that was so, one did not have any explanation.
He would talk as if he was disconnected to what was happening around him.
Eventually because of his condition he had to stop working.
He started not being able to recognise people and not being able to hold down a conversation. We had to keep a close watch on him to ensure that he did not disappear. Walking and doing things for himself became difficult; and then he became immobile.
This was in the late 1980s and knowledge of Alzheimer’s wasn’t really in abundance. Even the medical practitioners did not know what was wrong. They put it down to him having had a stroke.
It progressed to the stage where he was in bed most of the time. This went on until 2001, when he passed on.
It was only afterwards, when my mother started reading about it, that she managed to come up with a name and to know what was going on.
Among the Africans we’re still very communal, and in the past it was frowned upon that you take someone who is ill like that and place them in a home; so it’s just something accepted, that that person would be kept at home until their last days.
Most of us in my family worked outside the home town, so my mother had to carry the brunt of the condition of my father.
It is important one gets a proper medical diagnosis. When certain symptoms present themselves, even at an early stage, one should immediately take action. With the knowledge that I have now, I certainly would have done things differently.
For me, there is always a fear that there may be a genetic predisposition. It’s difficult to find out as to whether you do indeed have that predisposition.
My mother is those kind of people that you’d call stoic. She’s not the kind of person that would complain. I suppose to a certain extent it gave her pleasure that she was able to take care of my father until his last days. But you could hear, from time to time, one or two things, it probably was taking its toll on her.
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