Keeper: One House, Three Generations, and a Journey Into Alzheimer's (12 page)

We have neighbors for Christmas lunch, neighbors whose old kitchen’s been ripped asunder, but whose new kitchen didn’t quite arrive in time, and who were contemplating microwaved turkey for five. We go into town to see Morris late on Christmas afternoon. The starkly cube-based bungalow interior of the hospital smells mildly of figgy pudding, a new aroma to add to its usual bleach-and-plastics, sweat-and-gravy smell. The nurses are giddy, teasing, prompting jollity like summer-camp counselors. Sad swaths of thin green and red tinsel droop from ceilings. A little plastic tree is gaudy with baubles. Despite all this, Morris is not going to play the Christmas game. Presents don’t cheer him up. He opens them all with an air of great monotony, says little, doesn’t wish the children a happy Christmas. Nancy sits by him with her eyes fixed on me, the question in them unmistakable: What on earth am I doing here? The difference is that she means it literally.

Chapter 12

When a lot of remedies are suggested for a disease, that means it can’t be cured
.

—A
NTON
C
HEKHOV

B
ECAUSE THERE’S NO SINGLE, UNIFIED THEORY OF
A
LZHEIMER’S
, teams across the world are working on different bits of it, hoping that their approach will prove to be the key that unlocks the disease. Rather like the Indian fable about the six blind men trying to identify an elephant, some research programs deal with the trunk, some with the tail, some with the leg and others with the ears, some with the torso and others with the tusks, and all have different ideas about what it is they’re identifying. It’s a race, not just because cracking Alzheimer’s this year could save hundreds of millions of people in years to come (it’s a prestigious race) but also because the saving of hundreds of millions of people will involve billions of packets of drugs (it’s also a profitable race). There are fortunes to be made here, beyond the dreams of avarice. The latest estimate online put the dementia drugs market at $37 billion, and that was several years out of date, and is, of course, the pre-breakthrough figure, should the breakthrough ever come. Though it’s possible—some scientists say probable—that Alzheimer’s will never be cured as such, but will be managed with better drugs that keep it at bay, rather like HIV is managed today.

As far as causes of Alzheimer’s go, there are two main camps. One of them, what you might call the plaque orthodoxy, is much bigger and better funded than the other. The plaque orthodoxy says that the formation of plaques is the key process. The other camp, the tau heresy, begs to differ. It suggests that plaque is a red herring and that the answer lies in the tangles, the crumpling and snagging of the ladder rungs in the microtubules, the neuron’s internal communication lines. Work by the tau camp has focused on the adherence of surplus phosphorous molecules onto the tau protein, arguing this is the key process of Alzheimer’s, most probably caused by a genetic switch that could be turned off.

The plaque orthodoxy looks for ways to defuse the beta-amyloid crisis that seems to take place in the brain of sufferers, creating characteristic aggregations between neurons, clogging the neural glue with what look like suspect moles, crusty rounded lumps of something unevenly brownish. Bits of the cells that produce the neurotransmitter acetylcholine break down and become part of the plaque blobs. The plaque orthodoxy, which has been in place now for over twenty years, sees tangles as mysteriously secondary. Some tau heretics have a stiff rebuttal to this: Plaques, they say, are not only a red herring, but might be heroes rather than villains. Plaque, they say, is a sign of the brain trying to protect itself from something (the something that causes the tau to mangle). Plaque, they point out, has been seen in quantity in other instances of brain damage. Alzheimer himself was a tau man.

Don’t go away with the impression that this is a gentlemanly dispute (though it’s true that gentlemanly disputes have been taken into the woods at dawn with pistols). Pistols at dawn is more like it. Pro-tau scientists have had enormous trouble getting research grants or getting their results published in medical journals. The plaque orthodoxy has become quite medieval in its tolerance of heretics. So it’s heartening to see that the latest wonder drug, Rember, is a tau-directed one. Perhaps the orthodoxy is being challenged now. I hope so. I hope the tau-research-blocking drug companies have the good grace to look a little sheepish.

The question is, what’s really behind the mechanism, whether beta-amyloid or tau? What’s making beta-amyloid run wildly out of hand; what’s going on with the tau-tangling phosphorous? Presently, there are two answers: (a) genetic and (b) environmental. It’s conventional to ascribe the root causes of Alzheimer’s to a combination of both. A genetic predisposition and an environmental trigger: that’s mainstream science’s current best guess.

There are those inclined to lay the blame entirely on environment. Those who insist that Alzheimer’s, though not a new condition, is essentially a modern condition, a zeitgeist condition, the defining twenty-first-century disease, also tend to point the finger at multiple pollution. And once pollution is mentioned, a whole underworld of subgroups comes to light. In the United States, there’s been a widespread scare about amalgam fillings in teeth, and the resultant potential for mercury poisoning. Another points the finger at aluminum and other metals in the drinking water; yet another claims it can show evidence that pesticide poisoning in food is to blame. Manganese is spoken of suspiciously. These lines of inquiry may get somewhere or nowhere.

Two other theories doing the rounds:

1. That Alzheimer’s is a prion disease. Prions are peculiar things, infectious proteins whose molecules nudge up to healthy cells and corrupt them. The best known prion disease is called variant CJD, or the human form of mad cow disease. In research, transgenic (genetically modified) mice were given Alzheimer’s by being injected with autopsied brain material. Thus Alzheimer’s was shown to be infectious, though only in this rather specialized and perverse manner.

2. That Alzheimer’s is caused by a virus. Hepatitis C has been mentioned. There has been more convincing talk of herpes simplex, which infects a good many of the world’s population in a dormant state and can be activated by illness, stress, or inflammation.

I
N TERMS OF
treatment, immunization may be the way forward, certainly in the plaque camp. This idea was scorned when first suggested, but has been piloted with some success. The idea is that it works rather like the polio vaccine: The body attacks the injected beta-amyloid and with any luck also sweeps up the plaques in the brain (though whether this is fundamentally a good idea remains moot). Tiny amounts of vaccine get past the fine mesh of the blood-brain barrier, which protects the narrow blood vessels in the head from clogging. Early results claimed a 50 percent plaque clearance rate in some brain areas in transgenic mice. Unfortunately, when it was trialed on humans, the immune reaction was so pronounced that brains swelled dangerously. The latest research in Tokyo, going on as I write this, is focusing on injecting DNA that “codes for” beta-amyloid, provoking a gentler immune response. There are also trials going on for a pill that binds the amyloid and stops it from accumulating.

If Alzheimer’s proves to be a genetic condition, then genetic work is the way forward, and in terms of gene therapy we live in an age of wonders, with new diseases being identified and marked with a highlighter pen in the DNA all the time. There’s a rare inheritable form of Alzheimer’s, familial Alzheimer’s disease, that strikes people young—perhaps even in their thirties—and will go on to affect 50 percent of their children on average. It’s one very small subset of early-onset Alzheimer’s, which is classified as beginning at under the age of sixty-five. Familial Alzheimer’s has been found lurking at chromosomes 14 and 21 (and also at chromosome 1 in the American population). Regular Alzheimer’s—for want of a better description—the noninheritable kind, is thought to be indicated genetically by the gene
Apolipoprotein E (APOE). APOE4
, one of its four variants, is associated with high risk. If both parents carry
APOE4
, their children will have ten times the average risk of developing Alzheimer’s. It’s not all bad news.
APOE2
appears to indicate a much lower risk than is average of developing the disease.

Genetic diagnosis and manipulation is at a stage roughly similar to that of the New World three hundred years ago. It’s still in the maps, marvels, and flag-planting era, but once domination of the genome begins in earnest, and the railroad is built to traverse it, capitulation will surely follow in a rush. For now, it’s at an early, exploratory stage, a Wild West full of frontier towns and gunslingers. The encouraging thing is that it’s begun.

Chapter 13

I have said nothing. I leave nothing. I have not said what
I wanted to say. I have so much more to say.

—M
AURICE
R
AVEL

W
INTER ARRIVES WITH A VENGEANCE AND THE PENINSULA
feels intensely vulnerable, low-lying in an angry sea. It’s as if, were we to go up another notch in the storm conditions, it might all be swept away, scouring the place of buildings, washing the cattle barns and cottages into the ocean. I imagine us all, humankind and livestock together, found floating in the bay, distended, by a passing ship. It’s a sailing ship and it seems to be the early eighteenth century.
What disaster hath happened here?
I’m having peculiar daydreams. I sit at the drawing room window watching the hedges and shrubs blown flat and gray in mouse-colored rain, the sky low and woolly, looking at the distant dark peak of the mountain across the bay. A cloud sits over this hilltop, raining on it.

Morris is still in hospital. Progress, officially, is “slow.” The idea of mobility has been abandoned, though nobody’s explicit. Instead, the
W
word begins to be mentioned:
wheelchair
. Nancy sits in her chair for long periods, rubbing her hands. It’s too cold in the hallway for wandering, even with all the bottle-gas heating chugging away, the old electric storage heaters pumping out on max, every coal fire in action. No one hangs about between internal destinations. Washing and dressing are done at a gallop. Nancy is feeling the cold acutely, despite the customary five cardigans. She has taken to wearing a hat indoors, a dark blue felt number with a jaunty feather. Her hands are cold and so I retrieve a cashmere blanket from her cupboard, one in fine-woven gray that we gave her for Christmas once, tucking it around her lap and legs. Thus immobilized, Nancy’s a picture of a woman lost in a dream. Her hand rubbing has become systematic, ritualized. First, palms are placed together at right angles making a cross shape, rubbed as if rolling dough into a sausage. Then the back of each hand is rubbed briskly by the other palm in turn. After this, she interlocks her fingers, jamming them tight together and releasing, jamming and releasing, before the sequence begins again. Later, I read an identical account online of somebody’s mother’s behavior, and begin to see Nancy as pulled helplessly along bizarre, well-trodden tracks of disease, along Dr. Reisberg’s railway.

At intervals in the hand rituals, she twiddles her hair. Her gaze is averted from the television pictures flashing in front of her, off toward the window, toward the fire, or dipped carpet-ward, as she captures and twirls sections in turn. Her hair begins to develop twiddled kinks. These, the hand rubbing and hair twiddling, must be signs of distress. But what’s to be done about them?

We realize that Morris is a skilled Alzheimer’s companion, in his way. His way consists of the sharing of all-day television. He watches everything, anything, is a habitual channel flicker, and keeps up a steady dialogue with the programming that is really a way of talking to his wife. The sharing is crucial.

“Just look at that suit! What does she look like?”

“Three hundred fifty pounds? I wouldn’t give him ten bob for that vase, would you?”

“Look at the colors in the trees! I’d no idea Bulgaria was hilly, did you, dear?”

He uses television as an intermediary. He talks, and then from time to time, when it’s clear a response is required, Nancy joins in. “Oh yes, you’re quite right.…” She might almost pull it off, the illusion that she understands the question, but then likely as not will blow it: “And I have always thought so, but not many people, not many other people I should say, can see it that way, you know, and it’s been like that my whole life.”

Morris, in Alzheimer’s denial, can’t let such wittering pass uncontested.

“What are you talking about, you silly woman? It’s bloody Bulgaria!”

But Morris is still in hospital, and Nancy finds me lacking as a television companion. I’m not given to being surprised by television, or to arguing with it, or to commenting on people’s appearance. I don’t really watch it. I sit with her in front of it but my mind is elsewhere. Her mind is elsewhere, too. Or nowhere. It’s hard to know what or where her mind is now or whether she has, in any meaningful sense, a mind at all. Her brain functions well in instructing her body as to movement, forward propulsion, the signals required to bend and pick up a crumb from the carpet and eat it. If you ask a question, she’ll answer it, in a fashion:
Are you hungry?
I could eat something nice.
Do you like this color?
I think it’s very nice.
Do you want to go to bed?
Bed might be nice. But I’m not sure this is evidence of a mind. Are these her answers, the answers she gives me, or are they any old answers found in a box, retrieved from those that have survived the fire? Alzheimer’s robs the brain of time travel, of its customary and constant roaming forward and back, the past stretching behind and the future ahead. That’s how people operate. We put everything into context. But Nancy’s marooned in the present. I’m only just beginning to see how fundamental this is. As Milton writes in
Paradise Lost
, “that must end us; that must be our cure— / To be no more. Sad cure! For who would lose / Though full of pain, this intellectual being / Those thoughts that wander through eternity.” That’s what I want from my experience of outdoors, from my walks along the cliffs: thoughts that wander through eternity, escaping the tyrannies of the lists, and the intimate tedium of the caregiver’s day.

I’m not entertaining enough a television companion, though I try. If Nancy’s especially restless or upset, I’ll try to talk her through what’s happening on-screen. But it isn’t the same as having Morris here. He’s belligerent, and that amuses her. He’s a fund of trivia about various actors and their lives, who they married and divorced, their war service, other things they’ve been in. He makes cynical remarks about the soap plotlines, predicts what’s going to happen, whoops with pleasure when he’s right. Nancy loves all this and whoops along. Not much whooping is going on now. None. My heart isn’t in it. I remember, guiltily, that I had much the same trouble once with children’s television, and it occurs to me, not for the first time, that it might be me that has the problem.

“Do you like that dress, Nancy?” I’ll ask, rather desperately, as Nancy gets up to leave (leave home). “What do you think of that pink sari?”

“It’s very nice,” she says, but she isn’t engaged. It may be that my voice isn’t the right trigger. There’s nothing left that’s equipped to recognize me anymore. I’m a stranger, a pleasant enough stranger staying at the same hotel. Those are today’s assigned roles, it seems, to judge from the things Nancy tells me. She complains about the service, the temperature of the tea, the quality of the lunch. “They’re really not very good here at all,” she confides, leaning in toward my ear. “It’s gone downhill, this establishment, since the old days.” I sit with her after lunch and find “a nice film,” but eleven minutes later she’s up and out of the room. Eleven minutes has become her attention span for television pictures.

“I’m just going for a wee walk.”

Shortly after, I find her in Chris’s office, interrupting a business call.

“Perhaps this gentleman can help me,” she says, gesturing toward her son, her voice full of emotion. “Can you tell me where I am?” Tears course down her cheeks.

A
NEW CAMPAIGN
of making Nancy happy commences. We do housework together after breakfast—five times more housework than I would normally do—Nancy poignantly grateful at being allowed to share in the tasks. We clean windows, Nancy rubbing away at one pane of glass with a piece of kitchen towel and singing. “When all my eyes are finished, and the world is bright and free, then I will be there and I know I can come, and that’s the one for me.” She can still rhyme. Though she’s unhappy about having to do a different pane.

“There’s nothing wrong with this one and it said it liked it.”

“Yes, but look, the other ones are dirty.”

“Nonsense.”

“Its friends, you see them, look, here and here. Its friends are dirty and they will be embarrassed.”

“Oh dear. Oh deary, deary me, that will never do.” She changes panes. I’m aware that a lot of what I do with Nancy plays on the subject of shame. For this generation it’s powerfully embedded in, the worry about what people will think, and I exploit it thoroughly.

We vacuum rooms, Nancy going over the same piece of carpet back and forth. I leave her vacuuming and go to put some washing in the machine, and as I bend to slam the porthole door, I hear shrieking of a familiar kind. I go back to her sitting room at a run and find Nancy standing with her hands in her mouth and the Dyson lying on its back roaring. “It doesn’t work! It’s falling down!”

I get her into a rhythm again, but when I leave the room she begins to howl. My head comes round the door. “What is it now?”

“Could you do it? Could you take it? I can’t do it.” She withdraws to the safety of the wall but can’t take her eyes off the thing. It’s as if she’s forgotten how vacuum cleaners behave. This one might do something spontaneous and dangerous.

I vacuum the room and Nancy watches. “You’re so clever,” she says. “You make it look like nothing at all.” She begins to sing her “Irish Eyes” variant.

I
’VE BEEN READING
about music and dementia. The composer Maurice Ravel (1875–1937) had (probable) early-onset disease from about the age of fifty-two and died ten years later following unsuccessful exploratory neurosurgery. His most famous work,
Boléro
, whose sweeping repetitions are now firmly associated with ice-skating, has been cited as an example of dementia composing. He wrote
Boléro
in the year after becoming ill. The question that’s unanswerable is: Would a healthy Ravel have written the same score, or is it one of the best-known examples of perseveration in art? His own judgment seems clear; he referred to
Boléro
as “orchestral fabric without music.” Ravel’s dementia first presented itself as confusion about his touring schedule. He lost luggage, lost his tickets, and traveled with hoarded letters in his pockets. He forgot how to swim—the procedural memory having failed him—and almost drowned. In 1933, four years before his death, he told friends that he wouldn’t after all be able to write his planned opera
Jeanne d’Arc
, saying he could hear the music in his head but couldn’t access it. “It’s over,” he said.

We deal with laundry, Nancy and I. Laundry is a big part of the day. But now, it’s too cold to hang it outside and make laundry into a journey. The truth is, there aren’t many days when washing dries outside hereabouts: The growing season is short and the drying season shorter. It’s too windy much of the time, the clothes disappearing over the wall, or cast into bushes, muddy and torn. Laundry goes out warm and wet and comes back in cold and wet so there’s little point. Today it would return stiff and white with frost. Nancy stands at one end of the old-fashioned pulley in the utility room and I stand at the other. I pass her clothes from the basket and she pauses to pass comment on them.

“Those are underpants. They are not my underpants. They are horrible, actually.”

“They are your underpants.”

“Are they? Are they? Who said that was a very bad person because it’s entirely the other way.”

“Hang them over the pole. Like this, look.”

She has the elastic waist of a pair of pink underpants clutched tight in her fingers. She moves her whole hand forward but it doesn’t connect with the pole. Watching her, it occurs to me that the trouble she’s having is like using a mirror to try and fasten an earring or snip at a stray bit of hair. Fingers and scissors don’t move in quite the expected way. The mind plays spatial tricks of distance and direction.

“It doesn’t want to go,” she says. She jerks her hand forward further and overshoots. The underpants disappear over the other side and flutter to the ground. “There,” she says. “Give me another one.”

I give her a pair of socks. I put my hands over hers and guide them to the pole. She puts one on top of the other and fusses with them, trying to get them straight. I get on with the rest of the hanging up. “It’s quite something watching you do that,” she says admiringly. “You know just how it works. I think I used to know but I don’t know now, that’s for sure.”

I stop and look at her, a child’s school sweatshirt in my hand. “Do you remember being young and having washing to do?” I ask.

“It’s all somewhere else. My father was there.”

“You’re always talking about your father but you never mention your mother,” I say.

“Well, she was there, I expect. But I didn’t know her, really.”

“Why’s that? Didn’t you get along well?”

Nancy’s eyes are watering. It’s hard to know if this is weeping or whether the smell of detergent has triggered her allergic rhinitis. The rhinitis distracts her.

“I used to go along the street, you know, and I’d be crying. I have these terrible watery eyes and people would stop me and say, ‘What on earth’s the matter?’ and I’d say it’s just my watery eyes but you could see they didn’t believe it.”

“That’s a shame, poor you.”

“They’d stop me in the street and say, ‘What’s the matter with you?’ and I’d tell them straight, I have this condition but you could see they didn’t believe a word of it.”

“Didn’t they? That must have been annoying.”

“I’d be walking along the road, and people would see me crying and it was amazing really—”

“Shall we stop now and have some coffee?” I interject.

What would we do without coffee breaks? They stitch the caregiver’s day together.

We sit at the table and eat cake. Nancy is buzzing with energy but I am exhausted. The only real benefit is to the state of the house. I am that most conflicted of creatures, a house-proud sloth, so all this effort pays off in terms of the secret pleasure I take in order. Like nature, I can’t abide a vacuum (cleaner), but on the other hand I can’t settle to writing if the carpets are filthy, a curse that may be peculiar to womankind. So this is how I live now. I make an effort to be Mrs. Tiggy-Winkle in the mornings, and to include the elderly, confused hedgehog of my acquaintance in housewifely activities. Then, after lunch, counting on the aftereffects of physical effort and the sedating power of a cheese toastie, I chum my mother-in-law in her TV room. Nancy mutters and twiddles and hand-rubs away, and then dozes in front of the television and I—though sitting with her, in Morris’s electric armchair—disappear into my preferred world of words.