Life does not consist mainly, or even largely, of facts and happenings. It consists mainly of the storm of thought that is forever flowing through one’s head.
—MARK TWAIN
ALZHEIMER’S DISEASE CAUSES ONLY AROUND 65 PERCENT of the dementia cases recorded, but people tend to use the terms Alzheimer’s and dementia interchangeably. A friend of mine does this, referring to her mother’s Alzheimer’s, when it’s fairly clear, meeting the mother in question, that some other kind of dementia is to blame for her illness.
Senile dementia as a term was coined in 1838 by one Jean-Étienne Esquirol, a doctor who noted a progressive loss of memory and initiative and creeping emotional instability in people over the age of sixty-five. The phrase may have been new, but the syndrome was already as old as the hills. Plato was involved in a discussion about dementia in the fifth century B.C. Lucullus, a Roman general, died of dementia, and his decline, as written about by Plutarch, is persuasively of the Alzheimer’s kind. Marcus Aurelius, the Roman philosopher-emperor, writes in the second century A.D. that “even if a man lives a long time, it’s doubtful his mind will survive him.” He goes on to say that “the coming of senility may not be accompanied by respiratory or digestive disorders, no loss of the sensory life or of one’s desires, but even so, the power of the faculties, of knowing and doing your duty, dealing with crises, sensing that the time has come to die—all of the decisions, in short, that demand proper thinking about, all of these will nonetheless already be fading away.
“We must get on and live life,” he says, “not just because life is brief, but because our understanding may be briefer.” It’s an issue that has taxed individuals, their families, and the workings of society in all the years since. They worried about it in the fourteenth century: A test was discovered in the 1970s, an equivalent to the question-and-answer diagnostic test (MMSE) used today, that dated from 1383 and had been used to assess the competence of a woman in Cambridgeshire to run her own affairs. The 1970s were an important decade for dementia. It wasn’t until the end of the 1960s that it was realized just how prevalent Alzheimer’s is. Before that it was thought to be a rare disease, one small exotic branch of senility. Most cases were assumed to be of the vascular type, a furring up of brain arteries, which was still considered a normal part of aging. Alzheimer’s was listed in the textbooks as uncommon. It was only when autopsies began to be done on brains in huge numbers, and retrospective microscopic examination of stored brains was undertaken, that it became startlingly clear that Alzheimer’s was the main cause of dementia.
Dementia has been important in our history, then, and perhaps more important than is generally recognized. The tradition, or at least tendency, to elect men and women of mature years into power, and to allow people of over seventy to hang on to power, increases the risk that we will have leading statesmen and stateswomen—governors, presidents, and prime ministers—suffering from some form of dementia. It’s only fairly recently been discovered that Harold Wilson stepped down as prime minister in 1976 because he’d become aware of his own mild cognitive impairment (MCI), and foresaw accurately that dementia was on its way. Not all politicians have the insight to abdicate so early in the disease. It’s alleged that Woodrow Wilson had dementia in office, and that the resulting capriciousness of his decision making culminated in his failure to get Congress to approve the Versailles Treaty that ended World War I. It is also suggested that Stalin was a dementia sufferer, his failing intellect combining suggestively with increasing levels of aggression and paranoia. Roosevelt was evidently quite ill and possibly suffering symptoms of dementia when he had to negotiate with Stalin at Yalta in 1945 (he died two months later of a cerebral hemorrhage). The Labour prime minister Ramsay MacDonald is said to have struggled with dementia in office. Lenin died of dementia, which, as in the case of Stalin, was most likely brought on by syphilis. There seems little doubt that Urho Kekkonen, the president of Finland from 1956 to 1981, had Alzheimer’s while in office, a fact actively covered up from about 1978 onward. Ronald Reagan showed early signs of the disease during his presidency.
Dementia is fast becoming the condition that’s cited by the young and healthy as the disease that is most feared. It’s not curable, unlike cancer. It’s not able to be tackled with drastic measures, unlike heart disease and its bypasses and transplants. It’s more fundamental than that. We don’t have brains; we are our brains. You can lose a leg or an arm, or accept the gift of another person’s heart and lungs, and still be yourself. The brain is where the self lives. Lose the use of your brain by degrees and the self is stripped away, layer by layer. In the early stages, the middle stages, even in the early part of the late stage this may well be something you are conscious of, the lights going out one by one.
The dementia numbers are ascribed to our soaring life expectancy rates. It’s only an epidemic, so the orthodoxy goes, because we are living long enough to develop it. In 1910, when very little dementia was recorded, only 15 percent of people lived longer than the age of fifty. Life expectancy then was around forty-eight for men and fifty-two for women. We live, on average, around thirty years longer than we did a hundred years ago. Add to this another salient statistic: namely, the number of people over sixty-five worldwide is expected to double in the next twenty years. There’s the engine of the epidemic on a plate.
Vascular dementia, the artery-furring sort, is the second biggest dementia disease group by numbers of sufferers. Around 20 percent of dementia victims have this one, and another 20 percent may have a vascular/Alzheimer’s combination. It’s the dementia that’s most equivalent to heart disease. Vein damage prevents blood from getting to parts of the brain; neurons are starved and die. Vascular dementia can be caused by stroke: single-infarct dementia, if it’s a single serious stroke; multi-infarct dementia, if it’s lots of little strokes, some so tiny as barely to register symptoms, and this is the most common sort. A rare variant called Binswanger’s disease begins in blood vessels deep in the brain and may start to show itself with walking problems.
King Lear has been diagnosed, from the verbal evidence of the play, to have suffered from vascular dementia. There’s no doubt he suffered from one kind or another of dementing illness. “Methinks I should know you, and know this man,” he says in act 4. “Yet I am doubtful; for I am mainly ignorant / What place this is; and all the skill I have / Remembers not these garments; nor I know not / Where I did lodge last night. Do not laugh at me.”
The third most common sort is dementia with Lewy bodies (DLB); in fact, some studies claim it’s the second most common. Notoriously difficult to diagnose, it overlaps with other dementias. At least 20 percent of Americans with dementia are thought to have DLB, and among the elderly demented the percentage is much higher. Dr. Frederich Lewy identified this variant in 1912, having spotted tiny foreign bodies (proteins again) in the neurons in the brain. Parkinson’s disease also has these bodies, though in the case of Parkinson’s they’re confined to one brain area, the substantia nigra. Symptoms can mimic Alzheimer’s, though DLB victims may have more specific problems, with near-normal memory and language skills but trouble with abstract thinking. Hallucinations are so common as to be diagnostic, much more so than in Alzheimer’s. Sufferers may also have Parkinson’s-like symptoms, trouble with movement and tremors. It’s a very up-and-down disease with good days and bad days, good hours and bad hours.
The best known of the frontotemporal dementias is Pick’s disease, named after a Czech neurologist, Arnold Pick (1851–1924). Pick’s was isolated and named in 1892. Specks known as Pick’s bodies are found in the frontal and temporal lobes, to which this variant is confined. Pick’s can be nasty: It comes on early, can instigate massive personality change, and sufferers exhibit an unfortunate tendency toward lechery.
Frontotemporal dementia (FTD) also includes particular niche dementias, like aphasia dementia (loss of language) and semantic dementia, in which the connections between words and meanings are lost. Frontotemporal dementia
sufferers have specific problems with language, behavior, and emotional response. In research results, FTD has been more strongly linked with tau proteins than with plaques. No drugs are available: Alzheimer’s medications seem only to make things worse.
Other conditions can lead to dementia. Parkinson’s has already been mentioned. Variant CJD is another. AIDS can lead to dementia. People with Down syndrome or Huntington’s disease are at risk. Damage caused by long-term alcoholism can mimic dementia (Korsakoff’s syndrome), as can B vitamin deficiency, diabetes, kidney failure, thyroid problems, liver dysfunction, anemia, or electrolyte imbalance, though these are only apparent dementias from which people can recover.
Chapter 7
Our business in this world is not to succeed, but to continue to fail in good spirits.
—ROBERT LOUIS STEVENSON
IT’S AUTUMN ON THE PENINSULA, AND MORRIS IS RUSHED into hospital. He gets up out of his chair to go to bed, puts his foot forward awkwardly, and goes down hard, breaking his leg at the top by the hip. Nancy doesn’t know this, although she was with him when he fell, and held his hand until the ambulance came, and has visited him every afternoon. We keep it from her—or so she accuses, when it occurs to her to ask where he has gone, two or three dozen times a day. She doesn’t take the news very well. Her face puckers up pinkly.
“Why didn’t anyone tell me he was in hospital? That’s just ridiculous.” She sweeps out of the room in a huff, or tries to, her shuffling waddle a little faster than usual, her hands outstretched to grasp the door handle, like a great outsize wrinkled toddler.
There are days when the toddler similarity is persuasive and bizarre. Days when I feel like a babysitter, a new and inexperienced one, given care of a reluctant and stroppy child, having to make it up as I go along, trying more and more desperately to mollify and distract, and feeling that dark needle of fear when nothing I do makes any difference. She shakes her head and stamps her foot and has tantrums. She asks for her father and gets agitated when he can’t be produced, looks horrified when I confess that he and her mother are dead. Then, shocked by my own bluntness, I add, “But that’s because you are an old lady now.” She looks baffled. “You see, you’re almost eighty. You don’t have parents any longer, but you have children, and grandchildren. Six grandchildren. Three of them are in Canada, and three of them live here with you.”
Nancy’s face acquires a stony set look. “My. Parents. Are. Coming for me.”
When the forest fire of Alzheimer’s causes havoc in the frontal lobe, it attacks the site that most approximates our adult selves. Frontal lobe damage can return dementia sufferers to childlikeness, and also childishness. Childishness is the worst because it’s coated in a veneer of adult power, assumed authority, and physical strength. Sufferers can become unpredictably emotional, and this is likely to worsen until—probably late in stage 6—it burns itself out, the sufferer too ill to feel anything much. This is a fact I take comfort in, and the idea, leading on from this, that consciousness itself is eroded, so that by stage 7 there’s too little left of the self to experience anything much of what’s happening. In dementia, emotions can become dislocated from feelings. Emotions are bodily reactions, and feelings intellectual ones. The emotions are produced but the feelings—emotional impulses translated by the thinking mind—are lost or locked off. Nancy is emotional, now that Morris is in hospital, but she doesn’t understand it. She cries and is grumpy and cries again and apologizes to us all. “I don’t know what’s the matter with me,” she tells us, and that’s literally true. It takes a facility for remembering in order to know what it is you are feeling and why.
Poor Morris is likely to be in hospital for a while. He’s been to the county hospital for an operation to reset the bone, and is now back in the town, in the cottage hospital there, in his own room, with a television and a lifetime supply of toffee. The toffee is a way of dealing with the forcible giving up of nicotine. He’s become a chain toffee eater. We speak to the doctors about Nancy’s urgent need to have him home, in his usual chair. No dice; Morris won’t be released until he’s a bit more mobile. Nancy sits holding his hand and looks utterly blank. Having no memory of the accident, and unable to remember the hospital from one day to the next, she’s having trouble with the context of his being there sufficient to undermine her ideas about who Morris is, exactly. She’s no longer entirely sure.
We have horses now, two cobs: a chestnut one and a gray. Mine, the gray, is huge, like a medieval war horse with a long wavy mane. In the evenings, when the children are in place and happy to Nancy-sit, Chris and I ride out onto the headland. Curious bullocks come to the fences and snort, or dash across the pasture kicking their muddy heels, fizzing our horses into a froth. Sheep take off in a sinuous swarm, sticking together but running scared. Blown shreds of feed and fertilizer bags flap against barbed wire. I’m reminded that there’s another way of being out in wild places, something that supersedes introspection. Staying on board, the physical harmony of it, negotiating hazards and the intermittent thrill of speed: I may be beginning to see the point of sport.
October stretches out mild and sunny, and the horses sit together, legs tucked sweetly under their tummies, in the long meadow grasses of the lower paddock, fed to satiation and drugged on sunshine. I take Nancy with me, under the white tape of the electric fence, presenting unexpected carrots from coat pockets, scratching under chins and into furry ears.
“Nice doggies,” she says. And then, “Listen to me, saying nice doggies! What a fool I am sometimes. They’re not doggies, of course. I can’t think precisely of the word, though.”
“Horses. They’re horses.”
“Course they are!”
She puts a tentative hand out to a velvety nose. “Nice doggies.”
* * *
NOW THAT WE have her to ourselves, Nancy comes everywhere with us. She sits with us to have breakfast, belching and apologizing, a faraway look in her eyes. (Something’s wrong, something’s missing, but what?) She’s becoming vague, losing track of where she is and what for. It was Morris who anchored her days. We need to prompt her to go to the bathroom now, and prompt her to come out again, or she’d sit there most of the morning. Hands are washed with transfixing care, each finger done scrupulously, like a surgeon scrubbing up, and then a lengthy towel-drying ritual begins. I have to remove the towel after a few minutes, when this threatens to go on and on and fingers are beginning to be rubbed red and raw.
After breakfast, if we’re not going to town for shopping, we go to the village. Nancy likes to go into the shop and look at all the packets, the piles and rows, the colors. She picks up biscuits and cake and bars of chocolate: things she knows she likes. It’s another Alzheimer’s way-marker, this childish craving for sugar. She likes to talk to the shop assistant. “Look at that, you’re very clever the way you do that,” she says as the assistant rings up the prices. “I’m sure I could never do anything remotely like that, to be quite truthful.”
We drive home the two miles along the winding seaside road, Nancy holding onto the carrier bag in the backseat and keeping up a steady monologue.
“Look at those things there. Look how far apart they are.”
“You mean the sheep?” I crane my neck to look round at her.
“Sheep, is that what it is? They’re animals of some kind.” She sounds as if she’s reminding herself. In Alzheimer’s, the learned subtleties of categories of objects become less and less refined over time: A butterfly becomes an insect, and then an animal, and then a thing.
“Look, Nancy, there are cows, on the right; no, the right.”
“They’re amazing, aren’t they? They’re so big. You don’t think they’re going to be so big but they are. They probably always have been. Just me being daft again.”
“You’re not daft, you’ve just lost your memory,” I tell her.
“That looks like the sea,” she says, sounding surprised.
“It is the sea. You live by the sea.”
“I didn’t used to. I never saw it from one year to the next, to be quite truthful.”
WE TAKE THE shopping into the kitchen. “Can I help you with all of this?” she asks, eager to be useful.
“Okay, then. You pass me the milk and I’ll put it in the fridge.”
“Is this the right thing?” She hands me the newspaper. The matching up of word and object is seriously adrift.
“No, the milk. Big tall carton, white. Cold. There. In the bag.”
She hesitates. The old hands, mauve and white and heavy with their burden of rings, hover over the bags. “I can’t see it.”
It’s not happening for her now. It’s disquieting. The words milk, big, tall, carton, white: They don’t add up anymore to the object right in front of her.
“That’s fine, just pass me anything.”
She hands me the newspaper again. I put it aside. “Thank you. Now, something else?” She’s holding the new jar of coffee.
“Can you put that in the coffee cupboard for me?”
“Yes, I’d be delighted, if you tell me where it is.”
“Go toward your room a bit. No. The other way. That’s right. Along there and … that’s it, stop. You’re there. Right there. The cupboard.”
She bends to the floor and runs her hand along it.
Why does she do this? Are words and objects jumbling themselves, so that cupboard mismatches itself with floor? Or is it just that she sees I expect something of her, and the floor’s the first thing that comes to mind?
“No, not down there. The cupboard. The door. Open the door.”
She pulls one of the kitchen chairs out from the table.
I go to rescue her. “Look, here it is. Turn around a bit. There you go. See the cupboard?” She goes to pick up the kettle off its stand. I put my hand over hers and lift it slightly to the handle of the wall unit. “There you go. Cupboard. Remember? Where we keep the coffee and tea. Open it and look inside.”
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