Keeper: One House, Three Generations, and a Journey Into Alzheimer's (7 page)

But I’m aware that an argument is brewing over in the corner.

“All I’m asking you for …” His voice.

Then hers, shrill with irritation. “Well, I’m not doing it. I don’t know where it is or what it is and I can’t do it.”

“Of course you can do it. I told you, it’s on the chair in our sitting room. Our sitting room where the telly is.”

“I am not going anywhere and you have no right! No right at all! To ask me anything at all!”

Out of confusion, anger springs.

I lay down my tools. “What is it, Morris? Something I can do?”

M
ORRIS:
I’m feeling a bit cold and Nancy won’t go and get my cardigan.

M
E:
Why didn’t you say so? I can go.

When I get back, Nancy is over in the far corner, pulling hollyhocks out by the roots, and Morris is chiding her.

“I was told to do it,” Nancy says, “by that man there.”

“Here is Morris’s cardigan, Nancy,” I say to her. “Why don’t you take it to him?”

Morris clears his throat. “Actually, do you think we could go in now, dear? My legs are bothering me.”

Morris is supposed to be in charge of the kitchen garden, and the seed catalogs sit on the coffee table. The newspaper gets put on top, and the mail, and a packet of biscuits. I give him a notebook and pen and ask for ideas about how to lay the vegetables out, but these are put aside and forgotten about. There’s a run of warm days, moist and fuggy. Deep white fogs roll in from the sea and engulf us. Chris gets the acres of grass cut, tractoring up and down on the ride-on mower in the fog, audible from the windows but invisible. The waves crash onto the beach with rhythmic suddenness, sounding bizarrely close, the distance distorted by the bowl of the sea fret, the bay licked by humid and milky mist. Directly overhead it thins a little like a balding head and the sky beyond is a rich and brilliant blue.

Morris and Nancy are invited to go to the Thursday Club in the village. Morris doesn’t want to go, but neither is he able to withstand the entreaties of the two women from the club who storm the house to persuade him otherwise. Other than for this weekly outing, Morris sits in front of the television almost all of the time. I’ve given him a little silver bell to ring if he needs tea, or the fire fed, or a sweater, or help with Nancy, and he uses it with enthusiasm. I have spiritless phone conversations with my mother about the
invalid role
. On sunnier days, I have been encouraging the children to ask him if he’d like a walk in the garden, to be pushed in the chair. He hates the chair and doesn’t appear much to enjoy his excursions. In any case, the program comes to an abrupt halt one afternoon when Jack is taking him across the lawn to show him the greenhouse and the chair trips on a tussocky bit of grass, sending Morris flying out forward. Luckily the grass is soft and thick and only masculine pride is dented.

“Do something about it! Do something!” Nancy shouts as I rush to Morris’s aid. “I can’t do it. I can’t do anything. It’s only my first day here!”

As summer cools and the days shorten, the true nature of the life we have landed in begins to sharpen and clarify. Caregiving permeates everything and nothing is spared. If Chris and I leave Nancy and Morris alone, something occurs, some small but pertinent crisis. Teapots are dropped and people near scalded. Nancy is found with black hands, black handprints on her trousers and chair, having put coal in the fire without using the hearth tools. Outer doors have been opened and dogs let out. While we are gone retrieving them, there are other crises at home. Nancy has wandered off, leaving Morris panicky, unable to keep up with her. Nancy trips and injures herself. She puts herself to bed and promptly falls out, bashing her head on the bedside table and giving herself an impressive black eye. She is sent by Morris into the kitchen to get him a drink or a snack, and returns with the wrong thing, prompting an argument and Nancy leaving home (again). Morris answers the phone and is stern with B and B guests, demanding to know what they want.

It has, in short, reached a point,
a point
, of constant supervision. If we go out we have to take Nancy and Morris with us, levering Morris into the high front seat of the Land Rover, belting Nancy into the back, taking them into town, round the stores with us, sitting in tea shops, dealing with Nancy’s car-sickness on the way home. Anything that is done without Morris and Nancy in attendance is done at risk, and risk assessment becomes a part of life. We don’t go for walks anymore. We don’t go out as a family anymore—just the five of us—unless we can go as seven. We go as seven to the cinema, out to dinner, to visit new friends. We’re not often invited back.

I begin waking in the night in a panic, heart thumping, clammy. What is this future I appear to have solicited? I never imagined that the in-laws would become so immediately passive, and it didn’t occur to me that it’d become so particularly my job to look after them, but that’s how it falls, when men have proper jobs and women don’t. The conscience is sated, plump and shiny, but the appetite for the day is shrunken, alarms going off all over the internal city. What kind of person is it that can give of herself this much, I think, jadedly, lying awake and waiting for dawn. People who feel guilty about happiness and freedom, I think (shamingly cynical). People who crave dependents, perhaps. People who never really had a life of their own and relish the absolute vocation of this role. This isn’t me. This really isn’t. I came looking for the Sublime. The hunt for the Sublime, however, has become a grimly private joke. It isn’t out there, is stubbornly absent. And actually it’s worse. Something else is out there, when I go off running toward the beach, sit on the dunes chewing on the pale inner bits of grass, wander entirely aimlessly along the neck of the headland toward the sandstone plunge of the cliffs. The anti-Sublime. The wilderness will only give me back what I yield up to it and all I have to offer is disheartedness. It lends me its own, magnified and in multiple. I’m not just uninspired, but positively oppressed by outdoors.

Uncontradicting solitude
Supports me on its giant palm
And like a sea-anemone
or simple snail, there cautiously
Unfolds, emerges, what I am
.

Philip Larkin has the idea of the Sublime in his sights. I want to unfold and emerge. But I’m having the opposite experience. It occurs to me, during one of these walks, that Nancy and I are engaged on parallel journeys, hers into death and mine into depression, though this is grandiose and probably also offensive. My problems are contingent, after all. Life will shift, the sun will come out (the plain fact that her death may be the engine of this improvement is something I prefer not to think about). I’d never claim her metaphorically, poor Nancy, who’s twice my age and terminal, when all I can complain of is that I’m demoralized and low. But the beginnings of unhappiness are here, poised at the end of summer, for Nancy and also for me. And unhappiness distorts perspective. Thus it is that when I read on in my Larkin edition and come across one of his many poems about death, I see Nancy there and then myself.

This is what we fear—no sight, no sound
No touch or taste or smell, nothing to think with
Nothing to love or link with
The anaesthetic from which none come round
.

Caring produces a kind of anesthetic in this narrow sense, in its full immersion into near-intolerable practicality. Ludwig Wittgenstein wrote that “philosophy is a battle against the bewitchment of our intelligence by means of language,” and I’m aware that my feelings are being distorted by the anti-Sublime, the terrible useless self-pity I find down on the beach and transpose onto the pitying sea, the pitying sky, the pitying cliffs. Latching onto poetic sentiment has become a sort of literary defeatism. I am falling for the Romantic idea of myself as a victim. Caring is taking me somewhere new, somewhere poetry can’t follow without hindering my settling into it. This is a life-and-death struggle I’m engaged in now, someone else’s life-and-death struggle. It seems to blot the point of fiction out. I find I can’t read novels anymore and turn to biography. Biography and nonfiction. Read Wittgenstein, not Keats, I tell myself. “Beauty is truth, truth beauty”—phooey. Read Wittgenstein. “The world is everything that is the case.” That’s all. Get used to it.

Chapter 6

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
.

—M
ARK
T
WAIN

A
LZHEIMER’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.