Keeper: One House, Three Generations, and a Journey Into Alzheimer's (2 page)

In photographic comparison, a normal brain resembles a freshly peeled chestnut, pale and fat and glistening, and a brain with advanced Alzheimer’s disease looks rather like a walnut, shrunken and shriveled with bits apparently eaten away. The disease takes place as a physical invasion, involving the progressive destruction of the neuron forest. Under the microscope, the damage is theatrically obvious: there are plaques—fuzzy, rust-colored accretions of protein fragments—which interfere with the transport network, and tangles, which look rather like strands that have grown over the neurons, like bindweed in a garden, though in fact they’re a distortion of the neuron wall itself, its microtubules having collapsed into knots. As cells wither and die, gaps form in the tissues, leaving characteristic holes. American researchers working with the new generation of scanners, and thus able for the first time to look into the brains of living Alzheimer’s patients, have found that the disease starts in or adjacent to the hippocampus (the memory-processing zone) and moves farther into the limbic system (our emotional nerve center); around eighteen months later, it has crept into the frontal lobe (site of the thinking, reflecting self). The disease always starts in the same place and takes the same general route, but proceeds unevenly in its spread. Some sections of the brain will be decimated, but neighboring ones might be unaffected and normal. It’s rather like a forest fire in which clumps of blackened stumps sit adjacent to trees that seem oblivious to the disaster, untouched, their green canopies intact.

The term
dementia
(from
de mentis
, “out of the mind”) was coined in 1801 in the asylums of Paris. Today it is used to mean brain failure, and in just the same way that heart failure is a condition caused by a whole host of problems, brain failure has many sponsors. One in fourteen UK citizens over sixty-five has some form of dementia and one in six over eighty, but for UK citizens reaching the age of sixty-five in 2010, the risk of developing dementia is one in three. Almost one in six Americans aged sixty-five will go on to develop dementia, and more than one in five aged eighty-five. And that’s the trouble with it, in terms of PR. It’s an old person’s disease, by and large, and elderly ill people aren’t easy to “sell.” The issue is confused by our muddle about what’s normal in old age—the idea that senility is an ordinary part of the human condition, that it is aging itself made manifest, and thus can’t be cured. Progress is slow.

Research funds aren’t generous, despite the fact that currently dementia costs the United Kingdom about £23 billion a year and the United States a staggering $148 billion just to deal with damage limitation and long-term care. Unpaid caregivers, their lives transformed into a round-the-clock vigil, are saving the British government about £12.4 billion. In just one year (2008), the economic value of unpaid caregiving in the United States was estimated to be $94 billion. Two-thirds of UK citizens with late-onset dementia are living in a family home; about 70 percent in the United States. Both figures are probably higher when undiagnosed cases are taken into account.

In the United Kingdom, only £61 is spent on research per Alzheimer’s victim, though the amount is £295 per patient for cancer. In the United States in 2008, $5.6 billion was spent on cancer research, but only $0.4 billion on dementia science. Cancer has higher cultural status, even, perversely, a twisted, dark kind of glamour. Plucky young people get it, pop stars battle it, pretty wives and dashing young husbands die of it, and their pictures are spread across the newspapers. Cancer is a disease that journalists get and write about on the premise that if life hands you lemons, make lemonade. People with dementia don’t write about it much because writing isn’t something they do—or wasn’t, until recently, when the very-early-diagnosed patient lobby sprang into being and people like the writer Terry Pratchett began speaking out. The much-loved author of the
Discworld
novels, a man who’s sold 55 million books worldwide, allowed a BBC TV crew to follow him for twelve months. The resulting television program
(Living with Alzheimer’s)
charted unsentimentally the beginnings of his decline, his defeat by the attempt to tie a knot in his tie, his having to pause in giving a reading because he found that a “shadow” was falling repeatedly across the page. This is the kind of cultural event that introduces people to the idea that dementia has something to do with them. It will be a long road. In general, the Alzheimer’s demographic and its symptoms have meant that it’s very low caste—something that, even now, we associate with decay and the cabbage-and-disinfectant scent of the geriatric ward.

There are widespread misconceptions about the disease. Uncertainty is the midwife of misconception. The trouble is, nobody knows for sure what triggers Alzheimer’s. All we can hope for is that keeping fit, doing crosswords, and eating well will spare us. They don’t, necessarily. The illness of writer and philosopher Iris Murdoch attracted so much interest because people were amazed that someone like that could fall prey to Alzheimer’s, someone so clever, articulate, affluent. We live in an age-defying, mortality-denying culture. We don’t believe in ourselves as elderly. We’re interested in cancer and the carcinogenic because those are words that might turn out to apply to the thirty-eight-year-old as much as the seventy-eight-year-old; cancer afflicts the young and rich and fit. If Alzheimer’s equals old age, then that’s something we’ll deal with later … though we’ll be fine, because we drink soy milk and do Sudoku and play tennis on the weekend. The most widespread misconception is that dementia’s a good way to go: “They’re in their own little world and pretty happy” the misconception goes, and “they’ve no idea they’re going to die of it right up to the very end, which doesn’t sound too bad to me.” Very occasionally and exceptionally, in the online Alzheimer’s community, sweet-tempered-to-the-last is reported; the slow-fade sweetie who was never any trouble and died smiling in bed before indignity could take hold. But that isn’t the norm. That hasn’t been Nancy’s fate, alas.

I
F
I
HAD
to pick one catchall descriptor for Nancy’s life in the last few years it would be
misery
. Profound misery, unceasing and insoluble. She knows that something is wrong, very wrong, but what is it? She’s had a series of terrible daily encounters with herself and her environment that might have come directly from an amnesiac thriller: waking to find she has aged fifty years overnight, that her parents have disappeared, that she doesn’t know the woman in the mirror, nor the people who claim to be her husband and children, and has never seen the rooms and furnishings that everyone around her claims insistently are her home. Time has slipped, gone seriously askew. Every day for her is spent in an ongoing quest to put things right. The trouble is, she can’t seem to concentrate on the question or on possible clues to it. She can’t navigate the problem. When she left us for the nursing home, she was daily engaged in a very protracted, slow-motion form of panic. It’s been over eight years now since the formal diagnosis and eleven years at least since symptoms began, but even after all this time, she’s only at stage 6 of the disease. Stage 7 looms, the cruelest and last phase, with its loss of continence, motor control, speech, and ability to swallow. Eventually her lungs will forget how to breathe, her heart forget how to beat, and her quest will come to an end.

I have thought, said, and probably even written in here somewhere that Nancy has lost her self. That at least is the impression anyone who knew Nancy twenty years ago would have if they spent a weekend with her. The things that made her herself are all but gone now, I say, but what does it mean to say that? Obviously she is still herself, isn’t she? She isn’t anyone else. It’s just that the self is changed. Disease has changed it, or else, in some vaguely science-fictional manner, overlaid it with something new. But what exactly is the self, anyway? Must it have unity, continuity, in order to be authentic? Does it exist beyond and beneath the health or otherwise of 100,000 million neurons? Is there something else that encapsulates the self, something extra, indefinable, that we call the soul? If, as some philosophers of the mind argue, being conscious can’t be said to be without content, that it has to do with being aware of not only your own person but also your past and future, your place in the world, your culture and context, your hopes and fears, then where does that leave Nancy? John Locke may have come up with the notion of “consciousness” specifically to spike Descartes’s idea that we are thinking all the time, even when sleeping, but Locke also thought that we are only ourselves in having our memories, and defined personhood accordingly. Locke’s definition, being antique, is easy to forgive. It’s surprising, though, to find much more recent definitions that agree broadly with his. As late as 1973 an American philosopher named Mary Anne Warren demanded of
persons
that they be conscious, rational, capable of abstract thought, able to communicate, able to exercise free will, and have self-awareness. Under this severity, nobody with brain damage is a person, and Alzheimer’s, so often misreferred to as a mental illness, involves a catastrophic form of brain damage.

Materialists would contend that there is no soul, that we are only a kind of organic machine, our notion of a unique self misguided. It’s difficult not to be convinced by this idea, seeing Nancy’s selfhood warp and flicker and wane as the disease colonizes her. It’s not good—not even for privileged bystanders, counting their blessings—to see a self under attack. We prefer to think of our
selves
as something original in the world, inviolate, independent of our physical bodies. The idea that we are biochemistry, and that’s all, that thoughts and feelings are produced by neurons, that neurons can die and our selves die with them … that’s a deeply undermining idea. It’s far more comforting to contend that Nancy’s soul, her essential self, remains intact beyond the reach of her struggle to think and express herself, and will be liberated and restored by immortality. I try hard to believe this when I see her, alone in the dayroom in the nursing home, sitting rubbing her hands together and muttering. I can’t help wondering what she’s thinking.
Is
she thinking? Is she having a dialogue with her disease, negotiating with it in some way, aware of the great buried store of memory, her past, her self, glimpsed under the tangles of Alzheimer’s like a ruined house under the suffocating grip of ivy?

Now that she’s at one remove from us again, it’s easy to love her, and where love falters, guilt is primed and ready to fill its place.

Chapter 1

Three Years Ago

N
ANCY IS STANDING AT THE WINDOW AGAIN, THE ONE
with the spectacular view, worrying about how the oil tanker will manage to get out of the bay. She is making her anxious hands, rubbing each palm against the back of the other in turn, brisk and rhythmical.

“I just don’t think it will get out of the space, it’s too big,” she says, rubbing harder, her eyes full of concern. She is wearing all the cardigans she could find in her bedroom, in layers, having insisted on doing up all the buttons on each and tucking each sleeve under at the wrist. Her mood has improved since breakfast time, when she woke with the now-characteristic belief that she was newly discharged from hospital into the care of strangers: “But where is my family? Are they coming for me?”

“We are your family, honey,” I soothe.

She laughs disdainfully, shaking her head. “Either you’re a liar, or I’m going mad.” Most mornings, there are tears. Tears and confusion. Dressing is hard. She wants to do it herself, but bras and trousers go on backward. If we don’t get to her quickly enough, she wanders the halls in her underwear. She looks younger than seventy-nine, everybody says so, and this is especially evident in her near-naked wanderings. Physically she’s amazingly good for her age: unstooping at five foot seven, well proportioned other than a mild potbelly, determinedly upright. Her legs are strong and shapely. She can walk for miles, has thick silvery hair cut in a bob (it was sandy colored once, set into soft curls at the local salon once a month) and a charming smile, her pale face barely lined, though her blue eyes are rheumy now and her nose growing hooky. She’s acquired a prickly white beard under her chin, which my husband, Chris, shaves off every now and then. She won’t always let him at it. She can be protective of it, sitting stroking it in her chair. Some days it horrifies her. “Who put this here? Where did this come from? Take it away!” Or she thinks it’s a wound, a scab. “I must have tripped and fallen. But it’s getting better now.” Nancy’s at a good-days-and-bad-days stage of Alzheimer’s, and on bad days she accuses Morris of having given her the stubble, perhaps because she recognizes that beards are properly the province of men.

She returns to her little sitting room, her coal fire, her husband, and sits in her pale blue winged armchair. She asks, now, if it’s hers and if she can sit there. She hasn’t had it long enough to remember it. Only the very-long-term memory is functioning. Morris is sitting in the chair beside her, is always sitting in the chair beside her. His is electrically powered, tips back, is upholstered in orange tapestry. He was stout once and, with his square face, mischievous dark eyes, dark hair combed over, and mustache, resembled a rather better-looking Oliver Hardy, and was just as likely to suffer fools gladly. He’s mellowed. He appears to have shrunk, in all dimensions.

I’ve known Morris and Nancy for twenty-two years. When I first met them, brought home by Chris from university, I thought them old-fashioned, thrifty (furnishings and appliances had remained unchanged over decades), sociable, hardworking, right-wing. They were
Daily Mail
readers, natural conservatives, but generous about our student leftiness. I don’t recall anything much in the way of ideological standoff. They were all hospitality, bailed us out when we got into financial hot water, let us stay with them on an indefinite basis when work plans went awry. Despite finding our postgraduate ideas about office jobs and steady security highly provoking (we didn’t fancy either of these much), they were nothing but kind. Kind but unforthcoming, opinion withheld. This has been a pattern in our relationships.

Nancy and Morris moved here with the rest of us this summer. We have a lot of latitude in where we live. Latitude and longitude. Chris is an internationally known-in-his-own-niche expert on a specific use of new technology, and he consults widely, mostly from his home office, though there are bouts of meetings and flying. We have two teenage girls—Millie, sixteen, who’s tall and dark like her mother, and Caitlin, fourteen, who shares her father’s ash-blond coloring—and a boy called Jack, ten, a senior at primary school, tall and lanky and Italianate, with a scruffy dark shock of hair.

Moving, it turns out, isn’t good for Alzheimer’s patients. Leaving behind the familiar, having to adapt to the new. Nancy’s disorientation is ongoing. “I don’t know where I am,” she sobs, “I don’t know what I’m supposed to be doing.”

I’ve been reading about memory. In cases of transient global amnesia (total but temporary memory loss), people ask over and over where they are and what they should do, how they got there, what they should do,
what should they do now?
Doing is a big preoccupation. They don’t ask what might seem to be the obvious question: Who am I? That doesn’t seem to be a question the self asks of the self. Instead, it looks for clues from context: where, how, what.

Chris and I have different responses to her anxiety. He takes her hand and is tender, explaining that they weren’t coping, she and his father, and have come to live with us. I go for a jollier approach. “Well, lucky for you you’re retired now and you can sit in this chair by the fire and eat biscuits and watch the afternoon film on the telly,” I say. “Not like poor old me, I’ve got washing to see to, dogs to walk and vacuuming, the dinner to sort out, and you should see Jack’s bedroom.” Jack is proving dedicated to the acquisition of stuff, particularly electronic stuff (gadgets, dead laptops), as well as guns, swords, and lighters. Sometimes I worry about where these interests might lead.

“Oh, poor you, having to do all that,” Nancy says, fleetingly lucid, playing along, and I’m embarrassed at being caught out talking to her in this nice-nurse fashion. But the moment passes and she’s back at the window. “Look at all that water.” Her voice is astonished.

“Yes. We live here, out on the peninsula; the sea’s all around us. Do you remember coming here with us to live? We came last month. Do you remember?”

“Edinburgh,” she says under her breath.

“You used to live in Edinburgh, years ago. But then you moved up to Speyside, near our old house. Do you remember the bungalow? By the river?” She looks blank. “And now you live here, with us.”

She looks at me, grim-faced. “That’s all very well, but they laugh at me, you know. Not you, I’m not talking about you, but the others. They look me up and down in the street and I can see that they’re thinking, Who the hell does she think she
is?”
Paranoia, an Alzheimer’s marker, is just beginning to get its grip on her. But she’s been lovely to the children all summer, which is reassuring. Her face lights up when they go into her sitting room. She pats her knee, like she used to; Millie’s five foot ten and can’t help laughing. “Now come and tell me all about it,” Nancy says. About what, she doesn’t specify. The girls are good with her, as Morris is always telling me. They’re patient, tolerant, don’t rise to verbal bait. They do things at Granny’s pace, taking her arm in theirs. “Come on, Gran. Let’s go and make Granddad some tea,” talking her through the operation step by step. “Put the tea bags in the pot now. In the pot, not the mug. That’s it. Right. Hot water next, can you manage the kettle okay? That’s the kettle. Yes. Here, let me.”

Morris prefers television to conversation, or indeed anything, and it’s been this way for a long time. Depressed and immobile, he is master of the remote and flicks between channels with a desperate air. It’s like he can’t look away. Things are too awful in his present to contemplate them squarely. Because he’s so focused on his television day, Nancy’s life is frequently lonely. She can’t follow a television program any longer. She’s more interested in being with me, because—when running the household, at least—I appear to be doing things. She’s less keen on me when I’m writing or reading. “The men just sit there,” she tells me scornfully, unable to distinguish between one kind of sitting and another: one at his desk on his laptop and phone, consulting and earning, and the other in the armchair next to her, absorbed fifteen hours a day by the flickering screen. She follows me around. She wonders half a dozen times a day where
the friends
are, and if they are coming.

“I don’t want the friends to know I’ve been ill,” she says, as we pick tomatoes in the greenhouse. She eats the ones she picks or puts them slyly in her pocket, thinking I haven’t seen. Or just picks the dried-out leaves from the plants and puts those in the basket, smoothing them carefully. Then she takes them out again. “I don’t think these are ready,” she’ll tell me, trying to fix them back on the trusses.

The friends—imaginary friends—visit us sometimes, and she has days when she worries about how they’ll get here and how they’ll get home. In truth, her real friends have long deserted her, had deserted the two of them long before their move north.
Desertion
is a strong word; the truth is the process wasn’t so premeditated—it was a more gradual loss of attentiveness, a social slippage, the kind that happens when people get sick and have little to talk about other than their problems. Three from their old circle telephone from time to time, but it’s us they want to speak to, for reports.

“I need to say good-bye,” Nancy insists, twisting her handkerchief. “I need to see the friends off.”

“Don’t worry,” Chris says, trying to ease her agitation. “They’ve gone already. I saw them leave earlier.” And then, seeing her expression, he adds, “But they said to tell you they’d had a lovely day.”

“Gone already? But they didn’t say good-bye.”

“They did, don’t you remember? I think you might have been asleep.”

“They haven’t gone.”

“They have. I saw them; they left on the bus.”

She looks indignant, draws her shoulders up tight.
“They didn’t come on a bus.”

She appears to be having hallucinations. These are new, have arrived quite abruptly, and it occurs to me that our moving her here has aggravated the decline somehow, has accelerated it. Guilt is something I’m going to get used to, but for now it’s fresh and new. I take Nancy into the drawing room and we look through a stack of interiors magazines, me commenting and Nancy cooing. My laptop’s open on the table, and my attention is 80 percent diverted while I trawl the Internet for answers. Temporal lobe damage, it seems, can cause autobiographical hallucinations. Does she see the friends striding toward her across the lawn, looking just as they did twenty years ago or more?

Sometimes I think I can see them myself. The house doesn’t feel haunted—some big old houses do, but this one doesn’t—though there have been sightings, I’m told, in years past, of Victorians paused on the stairs, their eyes oblivious to the present. The first day we were here and went to the pub for supper, a fisherman propping up the bar asked how we were getting on with the spooks. I haven’t seen anything or heard spectral footsteps, but the whole property is soaked in what I can only describe as pastfulness. It’s pastful, and sometimes, even though I know it’s just this, I’ve half believed there are women in rustling silk frocks in that part of the wood that was once the rose garden, have half heard brief melodious laughter in the paddock that was once a tennis court. Who are these people, the friends Nancy talks about? It’s occurred to me that the altered perceptions of Alzheimer’s might allow people to see ghosts.

The house sits out in near seclusion at the neck of the headland, at the point where the neck joins the shoulder of a second, bigger peninsula, two miles from a village, fifteen miles from a small town, and far, far away from everything. It’s a great, four-square Victorian house with sash windows, crenellations, and crowstep gables, its overgrown walled garden framed in lichen-covered stone. It’s the kind of house that, while not grand enough for Manderley or Gothic enough for Walter Scott or English enough for Jane Austen, might serve as the scene of a death at the vicarage in Agatha Christie. It sticks up high on the low, gently undulating profile of this wind-scoured green promontory like a church, the sea rushing up the cliff faces around it. Building upward in this climate is an act of faith, almost of defiance. The architectural vernacular hereabouts favors single-story longhouses, long and low and hugging the ground, though a good many of these have been weathered into rubble, with kit-built bungalows parked alongside. After the longhouses fell from fashion, the local style favored one-and-a-half-story cottages, high enough to be provided with an upper floor snuggled into the eaves, low enough to brace themselves against the weather. The eighteenth-century terraced housing that lines the two principal streets of the village is fully double story, held in a self-protective loop around a deep harbor.

The house and neighboring farm were once one property, and together they owned all the land that can be seen from the single third-floor window, the attic window that leads out onto a precarious half balcony. The original farmhouse is two hundred yards down the hill, across the lane, enfolded by its barns and cattle courtyard into a wind-resistant square. The building of the big house in 1860 marked the achievement of wealth and status, a move up from the cottage to a grander residence on higher ground, one gleefully elaborate in its luxurious details. All that remains of the estate are the four garden acres inside the high wall, the privacy-giving wall, marking off the domestic world from the working one, separating peasant from gentry, keeping the bullocks and harvest workers in the adjoining fields out of the sight of the strolling, tea-taking, tennis-playing manor dwellers within.

The house layout is ideal for an extended family. The kitchen has two doors: one into Morris and Nancy’s sitting room, and one into the rear corridor, where their bedroom and private bathroom were converted from two former maids’ rooms. Off their sitting room in the other direction is a small lobby, which leads into their private daytime bathroom. So Nancy and Morris have, in effect, their own suite of rooms, with only the kitchen shared, and even that is two-family friendly, having two stoves and two full-size tables along its double length. The original thinking was that Nancy and Morris would self-cater, up to a point and with our assistance. They were keen, Morris said, to have as much independence as possible. They brought what remained of their marital past in packing crates, everything that had survived successive years of downsizing: their 1960s crockery and pastel-colored kitchenware; tarnished silver cutlery with worn bone handles; old pillows, duvets, blankets, marital linens smelling of cedar wood; boxes of clothes and miscellaneous items dating back forty years; old toiletries, socks, lamp shades; wallets and watches, belts and business paper.