Keeper: One House, Three Generations, and a Journey Into Alzheimer's (11 page)

“At some point,” I agree, “but we’re hoping that Morris’s return will restore the equilibrium. We should have a few years in the arrangement yet, I hope.”

“You should talk to the social work department,” she says brightly. “You could get some more help. You could get a care manager to coordinate everything.”

“I’m sure,” I say, “but we’d really rather not institutionalize things or get too many experts wading in. We manage fine. We struggle along.”

The following week, we admit our first expert to the house. He talks briefly to Nancy and at length to the two of us and convinces us that joining in is possible as a nonjoiner, in situations like this. Chris and I are reluctant. We don’t want to be part of the care machinery and enter the social work filing system. We don’t think Morris would want it, either. How will he react, in any case, on his return, to the new Nancy that Sian and Harriet have created, the one that’s talked to as if she is five and behaves accordingly? How will he deal with their taking charge of Nancy and redefining her, leaving him a helpless witness?

“We’ll leave things as they are for now,” the expert says. “But what I can do for you is organize a program of nursing home respite for next year. You’re entitled to six weeks. I’ll book Nancy in for six separate weeks, and I’ll be in touch with dates.”

Chapter 10

Ich hab mich verloren
.

—A
UGUSTE
D
ETER, THE FIRST CONFIRMED CASE OF
A
LZHEIMER’S DISEASE

A
LZHEIMER’S DISEASE IS NAMED AFTER A
G
ERMAN
psychiatrist and neuropathologist. In a lecture in 1906, Alois Alzheimer reported seeing the characteristic plaques and tangles in the brain of fifty-five-year-old Auguste Deter, a sufferer of early-onset disease who’d died earlier that year.
“Ich hab mich verloren
[I have lost myself],” she had said to Alzheimer, when first she was admitted to the Frankfurt asylum at age fifty-one.

Alzheimer didn’t discover the disease as such. It had been observed and written about before, notably by an early brain researcher named Beljahow, who reported brain plaques in dementia in 1887. Likewise, the presence of tangles had been announced by other neuroscientists before Alzheimer gave his lecture, but nothing formal had got into the textbooks. What was remarkable and newsworthy about Auguste Deter’s case was her disease’s very early onset. This helped make a splash. It was a sensation. Publicity was the key. Alzheimer’s boss, friend, and coresearcher, Emil Kraepelin, happened also to be a powerful figure in neurology and in science publishing. Today regarded as the father of mental disorder classification, Kraepelin named the disease Alzheimer’s in 1910, in the course of a description in his new textbook. He did so almost casually, in a paragraph of notorious vagueness, referring to “this Alzheimer’s Disease,” a reference that surprised his readers and colleagues. To quibble, the label
Alzheimer’s
ought in all justice to have been confined to the early-onset variant only, since that’s what the Auguste Deter research was concerned with. It’s also interesting to note that Alzheimer himself didn’t think the late-onset condition ought to be classified as a disease as such. It was his contention that Alzheimer’s happens to all brains in the end—they wear out, like hips and knees—it’s just the speed and volume of plaque growth, he argued, that marks the syndrome out. The speed is remarkable. Neuron loss in Alzheimer’s has been calculated as ten times the speed of that entailed in normal aging.

A sense of theater, a gift for PR, the pressing financial need to impress funding bodies: It’s suggested that all these led Kraepelin to make Alzheimer the eponym. Kraepelin’s battle with his great rival Sigmund Freud, as to whether such disorders were organic or psychiatric in origin, was another factor; Alzheimer had been supportive in putting Freud in his place. It helped that Alzheimer’s time was one of diagnostic breakthrough. Modern Zeiss microscopes (the original slides have been discovered and preserved) and the advent of silver nitrate tissue-staining process (the innovation of Alzheimer’s colleague Franz Nissl), which illuminated slices of the brain as never before, meant Alzheimer’s work had the benefit of technological advance over that of his rivals.

Alzheimer had left Frankfurt and was working for Kraepelin in Munich by the time Auguste Deter died in 1906. Her brain and spinal cord were sent to him by train in a box.

Her case was unusual and even today would be regarded so, not only because she was so young—fifty-one is very early onset and fifty-five a very early dementia death—but also because it came on so aggressively and fast. The polite confusion she showed on admission very quickly declined into raving and wailing and wordless wounded animal misery. A stark black-and-white photograph of her while in the asylum shows a woman who appears to be in her seventies, her brow furrowed into deep ridges, her face ravaged and baggy, a bewildered look in her eyes.

A
LZHEIMER’S OWN RECORD
of their first conversation survives. He writes that she looks helpless. He asks her name.

“Auguste,” she tells him.

“And what is your husband’s name?”

“Auguste.”

“Your husband?”

“Ah, my husband.”

She doesn’t appear to understand that it’s a question.

“Are you married?” he persists.

“To Auguste,” she says.

“How long have you been here?” he asks her.

“Three weeks,” she says with confidence (though in fact she was admitted the day before).

She can still identify a pen, bag, key, diary, and cigar.

She is given pork and cauliflower for lunch, but when asked what she’s having, answers “Spinach.” When asked again she says, “Potatoes and horseradish.”

He notes that objects shown to her are forgotten about almost immediately. In between she seems to have an obsessive interest in twins.

He asks her to write her name. She starts to write “Frau” and then gives up. Several attempts are made to write Auguste. First Augh. Then Auguse D, leaving out the
t
. That evening, Alzheimer writes, her conversation is full of non sequiturs and obsessive elements like perseverations, in which sufferers return to a subject, an idea, a phrase, again and again without making their meaning clear. (It’s not so much that they persevere with a subject, but that the subject perseveres with them.)

* *  *

T
HERE’S AN IRONIC
footnote to the story. Auguste Deter’s cause of death appears principally to have been arteriosclerosis of the brain: what’s now classified as vascular dementia, rather than Alzheimer’s disease. There’s also a poignant footnote. Auguste’s husband, on delivering her to the Frankfurt asylum, complained about her unreasonable jealousy. She was convinced, he said, that he was having an affair with a neighbor and had become irrational about it. Apparently he married this neighbor the year after Auguste died. Just because you’re paranoid, it doesn’t mean they’re not out to get you.

On his way to a new job in Breslau in 1912, Alzheimer became ill on the train with a sore throat, which led in turn to rheumatic fever. He died in 1915 of heart failure, in effect from complications of tonsillitis. He was fifty-one.

Chapter 11

The real voyage of discovery consists not in seeking new landscapes but in having new eyes
.

—M
ARCEL
P
ROUST

D
ECEMBER, AND WE ARE PLUNGED INTO DARKNESS.
I
T’S
dark when the children go off to school, dark long before they come home. The daylight window shrinks to seven hours of pearly gray, the morning half opening its eye; the nights are profoundly black and long. But into this darkness comes a great light. A twinkle light. Christmas. Thank God for Christmas.

Morris is still in the city hospital but, as a result of Chris’s ongoing appeals, is returned to the local hospital a week before the day. He’s been put on Prozac for his depression. The hospital consultant wonders aloud if Morris is succumbing to dementia. Depression, particularly in the elderly, is often misdiagnosed as Alzheimer’s, and vice versa.

I sit upstairs in the bay window of the upper sitting room and try to work. It’s difficult to concentrate. I’m becoming a connoisseur of weather systems, watching fronts invade and recede, break, roll, gather, disperse. There are weird lighting effects, lurid green clouds, and the winter sea is mercury silver, thick and lazy, lapping viscous onto the beach. Harriet’s singsong voice echoes up from downstairs. Harriet’s adopted approach is Not to Stop Talking. She blocks Nancy’s monologues by providing her own.

“Now, dear, shall we get a nice cup of tea? A cup of tea would be lovely, wouldn’t it? A lovely cup of tea. Right then, here we go, into the kitchen. Oopsadaisy and along to the kettle. Here’s the kettle and we lift it. Now what do we do with it? Fill it with water, that’s right. Here we go then, darling, here we go, along to the tap. Can you turn the tap on? That’s right, what a girl you are, what a clever girl. And off again. Good. That’s very good. Now we need cups.…” She must be exhausted to the point of annihilation when she leaves here. She doesn’t stop narrating for three hours straight.

Nancy’s become fixated on the kitchen. Perhaps it’s to do with Christmas busyness, the spice fruit pie making, the aromas, or perhaps it’s to do with her own definition of womanliness, this not being able to stay away, haunting the stove and the sink. I can tell it’s her who’s coming into the kitchen, even if the children are home, because of the struggle with the handle, and the way the door opens ever so slowly. Then she’s there, saying the same thing every time. “Oh. Sorry. Sorry, didn’t know anybody else was here. Sorry.”

“Come in, Nancy,” I say. “It’s fine. It’s just me.”

“Oh, it’s yourself. Well, that’s fine.” She walks the length of the room, turns, and goes back, wringing her hands and muttering. Goes along the length of the hall, wringing her hands. “I’m so useless, I’m not any good for anything, I’m no use to anybody, I may as well be dead.”

She’s become compulsive about going through doors. Later, I come across a paper about frontal lobe damage and visual prompts, in connection with wandering, which advises covering doorknobs with handkerchiefs or something similar. Alzheimer’s can damage the decision-making process so badly that a prompt like a door handle becomes, in the sufferer’s mind, an instruction. There’s no particular content to the trying of door handles, the neurologist author says. It isn’t necessarily anything to do with escape. Just a recognition that handles need turning, translating itself into the burden of having to turn them. It might actually be a relief, he says, to have the stimulus removed.

The busier the household gets, cooking and decorating and preparing for Christmas, the meaner Nancy’s mood. There’s protracted complaining about The Woman, the one who makes her do everything and does none of the work herself. I find myself wondering if it would be better for female Alzheimer’s sufferers to have male caregivers. Nancy would be happier with a man in my place. She’d get to flirt with him. She’d probably be more respectful—women of her generation have a natural deference, the kind that feeds men first and takes the leavings. She’d not be preoccupied with this jostling for matriarchal precedence. Though sexual confusion might become an issue. Dementia patients can suffer an embarrassing loss of inhibition. Lately, Nancy has made suggestions that make Chris squirm. “Come to bed with me, come on,” she says to him. “I’ll warm you up all right. Come and cuddle up,” patting the mattress suggestively.

Among the confusion and rage are flashes of good humor. I can make her good humor flash. If I worked harder to make her happy, it would flash oftener and longer. I’m aware of this. It’s a fertile source of self-reproach. I can take her by the hands and cheer her up, with smiles and tone of voice and suggestions of things we might do together. They have to be things we do together. Things she could do alone don’t work. But if I begin a sentence with “Why don’t you and I …” her face lights up.

“Will you come and look at the drawing room with me?”

“Yes, of course. What will we do there?”

“Come and tell me what you think about the decor.” I lead her into the room. We hold hands now when we’re together. “Look. Green walls. Horrible. Pond green. A pond-that’s-gone-off-and-smells kind of green.”

Nancy’s giggling. “You’re right, you’re right! It’s horrible. I’ve always hated green.”

I know that, Nancy.

“I’m going to get a repro wallpaper,” I say. “I’m thinking of one of the chinoiserie style ones with birds and trees. What do you think?”

“Oh, but look at that,” she says, pointing in admiration at one of the twin sofas by the fire. “That’s gorgeous. That’s gorgeous, isn’t it?”

“Do you like it?”

“I love it.”

“Even though it’s green?”

“It isn’t green, is it?”

“It’s a sort of greeny-blue. Turquoise.”

“Oh no. It’s green. I hate green. It’s the only color I really hate, to be quite truthful. I don’t like it at all.”

I persuade her to sit on one of the green sofas, and go and fetch a pot of tea.

“Ooh, cake. I like cake.”

I know that, Nancy.

She eats and drinks and rubs her hands together, looking into the fire, logs crackling and spitting.

“Did they say when they’d be coming back?” she asks suddenly.

“Who?”

“The boys.”

“Do you mean …”

“I mean the boys. My brothers.”

“You only have one brother, don’t you? I thought you only had one. Angus. In Australia.”

“He’s in Australia? Why didn’t anybody say so?”

“He’s been there over forty years, Nancy. Have some more cake.”

She eats it, looking thoughtful. Then she says, “When are my brothers coming?”

H
ER FAMILY IS
on her mind, it seems. Later, in the early evening, as I sit with her watching a nature documentary, she says, “When did he say he was coming back?”

“Who?” I’m reading the paper, not really listening. That’s the kind of bad mother I am.

“My father.”

The newspaper dips. Our eyes meet.

“Your father died a long time ago, Nancy, when your children were small.”

(As you can see, I’m inconsistent with the validation habit. Often it’s simply forgetfulness. I’m too used to telling the truth, bad at remembering to play along with the delusions.)

“I don’t have children,” Nancy says, mildly outraged. “I never married.”

Don’t bite. Don’t
. I obey, raising the paper again.

“When did he say he’d be back?”

“Who, Nancy?”

“My father. He isn’t usually this late.”

Nancy often refers to her childhood, but always in this same impersonal way. It’s on her mind, but floats free of content. I’ve never heard her refer to the far past, to the 1930s, for instance, when she was a child, in any other way than this. I’d expected that the loss of short-term memory in Alzheimer’s would bring the long-term memory sharply into focus. I’ve been reading Patrick Leigh Fermor’s books about his epic walk across Europe just prior to the Second World War, which he wrote largely from memory decades later, the earliest of his notebooks having been lost during the trek. He said that writing the account was like trying to reconstruct a dinosaur from a miscellaneous bag of bones. I didn’t expect the whole dinosaur skeleton from Nancy, but I expected to be shown the bag of bones at least, and nothing remotely like that has happened. She has vague persistent cravings for her parents—her father especially—and talks a lot about the “brothers,” but that’s as far as it goes. No telling details emerge, have ever emerged, and didn’t, not even when I first knew her. I don’t know anything about her. Chris doesn’t know much more. Morris isn’t expansive on the question.

I sit with Nancy in front of the television and escape down my own wormhole, the one provided by the Internet, laptop balanced on lap. Somebody out in the odd, dislocated world of anonymous, typed-and-not-spoken conversation makes a lighthearted remark about the spiritual advantages of Alzheimer’s. I don’t bother shouting him down, as I know from previous experience that hundreds will be racing to do just that. Dementia caregivers are everywhere and fatuity isn’t tolerated. The person (no gender ascribed, even) makes the point that living in the moment, only in The Now, is surely the target state of Buddhist teachings; that Nirvana is a state of perfection attained by being cut off from past and future and their attendant states of wanting and anxiety. I can see what they’re driving at and it’s an interesting starting point for a discussion, but it’s a debate that will never take place, as the self-appointed moral guardians who cluster at all such sites zoom in for the kill, hungry for the acclaim that will follow. Unfortunately, a state of bliss isn’t the end point of Alzheimer’s. Quite the reverse. The reality of having no past or future is that it isn’t a state of perfection but of absence. The brain can’t handle the absence and a chaotic, scrabbling sort of panic for order and meaning ensues. The Buddhist idea of living in The Now is, surely, something achieved through dealing with past and future, and not their absence—of quenching their demands and silencing their voices. These are sleeping dogs, not missing dogs. In a state of Nirvana we’d have total control over them, reconciled, having triumphed. An end to wanting and anxiety isn’t ever going to be achieved through amnesia.

W
ILD
W
EATHER.
I
T’S
too cold to do anything much, other than huddle by the stove and drink tea and eat muffins. I could do this with Nancy, of course, and do. But doing it alone seems like a treat. It amuses visitors that all of us in the family have adopted a great thick blanket each and wear these like cloaks in the house. I sit by the stove with my blanket tightly wrapped, just a hand and a paperback sticking out. Bitter, scouring north winds blow, gale force 8 or 9, not the strongest we’ve had but impressively gusty, and sufficient, earlier, to blow my new striped hat off my head, right over the top of the coach house and into the sheep field next door. It’s my own fault. I know about hats. In any case, it’s irretrievable: There’s a foot of mud at least to navigate and the damn thing has disappeared under a stampede of ewes, charging toward me, hungry and hoping for food. The chickens huddle together under the laburnum tree. I take hay to the horse paddock and am almost blown over. The poor horses chase wispy escaped sections around the field as it blows along like tumbleweed.

We have a Christmas party at home and invite everybody we know or have come across since we arrived. Neighbors, other school parents, villagers, people we’ve met through gallery visits, the organic farmers from over the hill. Over a hundred people turn up and I worry that I’ll have to introduce everybody but, of course, it’s only us who are strangers. Everyone else is connected in the firm, elastic web of rural relationships and they greet each other like the old friends that they are. We have hired musicians for the evening, a fiddle player and a guitarist. I place them in a corner of the drawing room, they start to play, and immediately, as if given the nod, the fire begins billowing smoke. Nancy circulates, asking everybody if this is their house, thanking bemused guests for inviting her, reprimanding six-year-olds for running, and getting sloshed on whisky. She retreats to her armchair and half a dozen kind souls gather round her to chat. I am visited by a surge of well-being, rightness, and good fortune. This is a good community, and it’s Christmas. The hall table is piled with presents. The night is crisp and snowy. Cars are parked all along the drive, half on the lawns and paddocks, all along the verges of the road. People arrive with cold feet and go home tipsy, squeaking along, leaving trails in the white, shouting “Happy Christmas” into the dark.

I’ve been reading about Marcel Proust. His hero in
In Search of Lost Time (À la recherche du temps perdu
, also known as
Remembrance of Things Past)
has an epiphany, a moment of physical and psychic joy, synthesizing childhood recall and a sense of the unity of life, while dipping a madeleine into a cup of lime blossom tea. This much is well known. Proust’s experience of memory was multisensory, engaging taste and smell, and was auditory. Other people have told me they hear music in their dreams and in recollecting, though I never hear music in mine, which tend to be faded celluloid moments with the sound turned down low. Proust insists that it isn’t necessary to go out in search of a connection with the Sublime. He finds meaning in small domestic details. He says that the ordinary world of eating and drinking and being alive is full of wonder and beauty and charm, and ours is the ordinary collective failure of failing to look at and relish it properly. (I do sometimes wonder what else was in the lime blossom tea.) In any case, Proust’s life can hardly be described as dreary, or burdened by necessary altruism. He was blessed by untroubled self-absorption. Ill, fragile, hypochondriac, he still managed a lively Parisian social life, had servants, lived at home, and was fussed over throughout by his mother until she died when he was thirty-four. He inherited the equivalent of £3 million, and spent as much of his life as he wished in writing absurdly long novels in bed. “Proust on the Peninsula” is a book that will never be written.