Keeper: One House, Three Generations, and a Journey Into Alzheimer's (15 page)

Chapter 16

One need not be a chamber to be haunted;
One need not be a house;
The brain has corridors surpassing
Material place
.

—E
MILY
D
ICKINSON

W
HAT HAPPENS WHEN THE ABYSS OF AMNESIA IS
opening constantly at your feet, as it appears to be with Nancy? Some days it appears that her brain is compensating by creating and supplying its own answers, its own improvisations: fictions that keep her afloat. It isn’t that nothing is going on in there, in her brain. She improvises her reality from minute to minute. This is on my mind today, a stormy April morning, and as it happens, the first anniversary of our agreeing to buy the house, because I dreamed last night that Nancy was a sales representative, working in a postapocalyptic landscape. There was a war-blackened ruinous backdrop of burnt-out skyscrapers; it didn’t much resemble Edinburgh. The company she worked for had gone, as had all the other personnel, leaving her alone in the city, but she kept going, working out of her car and flying by the seat of her pants. My dreams lately have tended to the metaphorical.

It isn’t possible to have identity without a history. Pascal was wrong when he wrote, “If somebody loves me for my judgment, or my memory, do they love me? Me myself? No, because I could lose these qualities without losing my self.” The more I think about this statement of his, the odder it seems. It’s normal for selves continually to be evolving, and in that sense Nancy’s improvisations are reassuring. Something is happening. It hasn’t all come to a halt. I am writing this in bed, early in the morning, the rest of the family asleep. Since waking I have thought, apparently randomly, fleetingly, about a whole array of insignificant things and in making decisions, reflecting on them, I have become a new person, albeit in a trivial sense. As Heraclitus had it, you can never step into the same river twice.

Which rivers does Nancy put a toe in? Which river is she wading in, thigh deep, in those periods of sitting in her chair hand rubbing and looking deep in thought? It’s clear from her eye movements, her mouthings, her shifting expressions that something is happening. Are they words, pictures? Is she thinking in the first person, or does her voice come at her like dictation? Where is her mind taking her right now, lying awake in her twin bed, the light vivid at the edges of the curtains, Morris snoring lightly and curled in a fetal circle? She’s lying facing the door, facing her upright wood-framed chair, the clothes laid on it from yesterday; she can see Morris and the entrance to the bathroom. What occurs to her about these things that she’s looking at? What content and format do the improvisations take? The little output that does reach us—
this is my house; you work for me; I was born here; my father is in the garden; I must get to the office; the friends are on their way
—doesn’t hint at much in the way of a coherent alter ego, nor the creation of whole new identities, if you discount one-offs like the king of Scotland episode. She doesn’t claim to be anybody else, other than, on occasion, her younger self, unmarried, unburdened, childless, her whole life ahead of her (and don’t we all imagine our immortal souls, our essential selves, to be fixed at around the age of twenty-eight?). Nancy’s fictions are more to do with her brain coming up with scenarios that explain her life now. For half-hour periods, she is the owner of a big house in Edinburgh with staff (the rest of us), and/or somebody who has lived here her whole life, confusing it with the estate where she was born, and/or must get the house ready for a party because the friends (everybody from her past that she can remember, I assume) are on their way. They’re called the friends, collectively. She no longer has a handle on any particular name or face, is just hopeful that they’re out there and on their way to rescue her.

Waking this morning at six and listening to the wind rattling at the windows, I tried to fake being a person without a memory but it was impossible. Everything we are is the sum of our history, augmented by every new experience, each stone added to the cairn and modified by our thoughts about that stone, and about the shape the cairn is taking. Our selves are fed by our narrative, the story of our past and our imagined futures. Ask me who I am and I turn immediately to memory. It isn’t possible to answer the question “Could you tell me something about yourself?” without recourse to biography. Even aside from replies that start, “Well, I was born in …” (which are the most obviously memory driven), other kinds of responses, ones that try to avoid the straight biographical—“I am intelligent, curious, anxious, and usually hungry”—also rely entirely on memory. You only know yourself because of your memory. If you ask Nancy who she is, she can quote her name, but that’s all that’s likely to arise from her unprompted. If you ask her, “What are you like?” or “What kind of person are you?” she isn’t able to answer. She’ll appear to think about it. The eyes dart from side to side. But then she says, “I don’t know, really,” or “I couldn’t exactly say” or laughs defensively. At a fundamental level there has been a disconnection and Nancy’s self is locked in a room with no windows.

Who I am is what I’ve done and experienced, and what I think about it all; how other people make me feel about it all, how the books I’ve read and films I’ve seen have made me think and feel about it all, creating a unique and labyrinthine web of connections that is my self. I have a library of self at hand. I can wander the halls of this library and choose whichever bit I like, and read from it and enjoy the indulgence of having new ideas about the past. I find in the last few years that I am dipping into it more and more and finding surprising new connections between things. This, I suppose, is what people mean when they talk about personal growth and one of the few compensations of being post-forty.

The only (inadequate) way I can relate to what Nancy experiences when she wakes is in recalling moments when I haven’t been sure where I was. Waking from an anesthetic. Or waking up in a strange hotel room, with the wrong furniture, the wrong shadows, the wrong smell, the door in the wrong place, and that first mildly alarming recognition that this isn’t home. The alarm is barely formulated before it’s redundant. The brain steps in hurriedly with information, clears its throat: the efficient personal secretary.
Ahem. I think you’ll find you’re in the Travelodge. Half-term trip
. Ah. Yes. An instantaneous connection is made between this room—the Travelodge, the half term, the life I have—and the library of the past, which is always with me, wherever I am. The Travelodge becomes another pebble on the cairn.

This morning when I opened my eyes the room I put together was there, the anticipated objects, Chris sleeping, everything familiar and as it should be. I’m looking around it now. It’s cold and I’m wearing a sweater in bed. The clean laundry is piled on the chair awaiting sorting. My new handbag is hanging from the wardrobe door. I recognize the handbag. I remember buying it. I don’t bother to have the memory, in full, of the shopping and acquisition; it’s more like, in computer terms, a shortcut on the desktop that I am confident leads to the memory. I don’t open the file, though I did, the morning after buying it, reviewing the choice that was available and reassuring myself that I didn’t want the red one with the too-short handles that I was drawn to initially. That’s all I needed to do. Now when I see the handbag all I see—and I don’t even see it, I don’t need to—is the shortcut on the mental desktop that connects me to the object. It’s so brief as to be a shortcut to the shortcut. Recognition. It fits into my narrative and that’s all that’s needed. If I wake and see something that doesn’t fit—a book I haven’t seen before that’s appeared on the bedside table, say—then my first instinct is to try and make it fit. There’s a book there I don’t recognize. How has it appeared on the bedside? I didn’t put it there, did I? I do a brief file search. Oh yes, it was purchased in a rush in the city—I see the bookstore, I see the face of the assistant—bought for a birthday, and last night Chris was emptying the bags. He must have put it there when he came to bed, thinking it was for me. It’s good to
see
the bookstore and the face of the assistant again. It reassures me that my narrative is intact.

But Nancy doesn’t have any of this anymore. I don’t know what she does have. Her mind, unable to deal with not being able to make sense of things, makes its own sense, delivering explanations up from fragments, inventing new scenarios that make things seem coherent. Whatever the case, it’s clear that her self has been pared back to the minimal. She is operating on the level of the
core self
, which Antonio Damasio, a neurologist-neuroscientist at the University of Southern California, describes as “a transient entity, re-created for each and every object with which the brain interacts.”

Nancy says to me almost every morning, “I’m sorry, I don’t know where I am,” and in the circumstances that seems a remarkably gracious response. It’s her face that betrays her fear. The reason I’m not afraid on waking is that, stirring and stretching in bed, everything I see around me is explicable; it was
put
. Personal history isn’t just about the CV, executive or social. We have history with everything surrounding us. The house is one we bought having sold the previous one. Our possessions carry with them their own stories, of how they were acquired and where, and their thing biographies, things that have happened since we got them. A chair used for reading is a highly evocative thing, or a sofa owned since the children were small. Look hard at that sofa and you’ll see them, little pink and white people, fresh out the bath in clean pajamas, waiting for a story. An old pair of jeans carries history with it, that’s why they’re hard to part with. This isn’t just sentimentality, but context. Imagine waking in the morning and finding everything around you is new: the building, the garden outside the windows, the people who talk to you as if you know each other, the shirt the stranger hands you, the chair they take you to, the man sitting in the other chair. If your brain were still intact enough to want to make a history out of things, it might get around the novelty of all this by explaining your real life as somewhere else. You are somewhere new and your life is somewhere else. All you’re going to want to do is get back there.

I’m getting up now to make breakfast. The house layout is known to me. Rooms are subsequent in the expected way. The kitchen cupboards hold the things I put in them. I know where the frying pan is, the olive oil, the glazed bowl, and the whisk. There are leftover potatoes, garlic, some tomatoes for the omelet. As I rise and dress and go down to make the breakfast, I’m running through visual anticipations of how it will be, barely consciously if at all; each next step conjured and satisfied in turn. In a way, I’m remembering things before they happen.

Six months ago, Nancy may have appeared in the kitchen, hearing me up and about, and once I’d reassured her by appearing to know her and offering her tea, she’d ask if she could help. I miss helpful Nancy, wanting to do things. Although, asked to put eggs in a bowl, she couldn’t even then have grasped what was being asked. She might, with encouragement, have put the eggs in the bowl, entire, shell on, and stared at them as if expecting them to act. She remembered “egg” then, though “bowl” was trickier. Always, with the progress of Alzheimer’s, life is bound up with lists and ranks of objects, and tiny gradations of loss.

Chapter 17

Time changes everything except something within us which is always surprised by change
.

—T
HOMAS
H
ARDY

S
PRING BRINGS SUICIDE TALK.
W
E NO LONGER LEAVE
Nancy alone with Jack, since she started seeking counseling from him about her urge to go and jump in the canal. She means the canal that passed by their Edinburgh apartment, I presume; a canal she’s known twelve years, hanging grimly on in episodic memory. Heaven knows why she picks on Jack, but she does, singling him out and pinning him to the wall with conversational monologuing, from which there is no easy escape; Jack signaling for help wild-eyed, like a desperate guest at a cocktail party cornered by a bore. I look up dementia and suicide and find there’s no consensus on their interplay. The orthodoxy is that suicidal feelings are burnt out early because of the self-awareness that’s required, though there are heretics who say otherwise. Giving up eating and drinking, voluntarily and abruptly, in a way that seems to have been considered and decided upon, is known in nursing homes as Alzheimer’s suicide. It’s a not-uncommon way to go. Whether it is suicide is debatable. If people live long enough, the disease will reach the brain area that sponsors sensations of hunger and thirst.

Alzheimer’s is set to become a hot potato when, eventually, assisted suicide is legalized. Dignitas, the Swiss suicide organization, which offers a legal framework to the suicidal—providing a house and a lethal dose of barbiturate, and leaving it to the client’s discretion whether they take the drug or not—was questioned a few years ago about the death of an Alzheimer’s patient, and whether he could be guaranteed to have been of sound enough mind to make the contract between them legal. Dignitas responded that even someone with advanced dementia may have moments of sufficient lucidity to want to die. This idea has been shouted down as ludicrous but I’m not so sure. Nancy keeps talking about the canal.

She talks to her address book about it. She’s carrying her address book everywhere with her now, and won’t put it down. Not on the toilet. Not in the bath. Not in bed. She tells me she’s heard “the people” plotting to take it. She sits in her armchair and talks to it. Sometimes to herself, about it, flicking the pages and narrating; sometimes to the book directly, asking it questions. She seems to recognize that it has something to do with her past. An address book is, after all, as personal as a photograph album. She’s had this one for thirty years or more. Addresses in it are written in various inks, the handwriting varying according to mood and circumstances, health or tiredness, and whether the writing was done on lap or table or against the wall, the telephone receiver held tight under her chin. Numbers and names have been scratched out and replaced. Old friends, some of them long dead. People she worked with once. Relatives, former neighbors, and fellow school parents. The addresses Chris and I have lived at in our many nomadic wanderings, and those that track the life path of her daughter. It’s a fairly small address book, small enough to fit in an ordinary business envelope, cream bound, tatty, its cover dotted with seventies-looking flowers and butterflies. The hinge of the binding is beginning to wear through, and pages are coming loose from the stitching.

Every time I go into the in-laws’ sitting room, there’s Nancy with the address book, head bent in concentration, flicking through and talking to herself in a low and urgent tone.

“And that’s the one I want. That was always the one. Yes.” She taps her finger on the page decisively. Her nails have grown long again and mysteriously they appear well shaped, with smooth semicircular ends. She must be using an emery board at night; there’s one in her underwear drawer. Nail care, so much a part of her life once, must be embedded deep in long-term memory, one of those automatic activities that don’t need thinking about. (Thank god for the cerebellum. Imagine having to learn to walk afresh every morning.) “And there it is,” she says, confidentially to an entry in the address book, a pointed finger hovering. “There’s the one. That’s the one.” Flick flick. “Ah, now look. That’s the one I was meaning. I meant that one. That one there. That’s it.”

“You’re not having it!” she shrieks at me when I try to put it on the coffee table.

“I’m not taking it, just putting it down. Right there. So you can eat your supper.”

“It’s not any of your business!”

“Here’s your knife and fork, look. You’re going to need two hands to eat this piece of chicken.”

“I will do it as I do it and I thank you to keep your nose out.”

“Okay, then.”

She holds on, her grip white-fingered, to the book, and uses the fork a little. Then she puts the fork down and eats with her hand. The book is not relinquished.

She starts taking her teeth out in bed. This is a new development. It’s been impossible to get her to take her false teeth out for years. But now she wakes with a jaw-caved-in look and speaks in a different way and it’s obvious that they are out. We play hunt the falsies. They get put away in unpredictable places in the night: in drawers, under things, on windowsills. One morning we find them in the toilet, sitting unflushable under the water. On another, the Tuesday bus is kept waiting, engine running, at the conservatory door while we do a last frantic search.

“She’ll just have to go without them,” Chris says.

I pick up her wallet, her latest pet, which unaccountably she’s left sitting by the bed, and find it is strangely lumpy. Sure enough the dentures are within, stuffed in tight and straining at the leather.

Next, the invasion begins. The in-laws are getting lots of visitors. Since I said to one of the health team that they should come straight in and not bother to knock, everybody now does this. Which is fine. We might not hear the doorbell, we might be on the phone. We don’t, in any case, want to have to go to the door repeatedly and make stilted conversation with health visitors. Far better if they just come straight in. They know where to find Morris. Morris no longer moves. He keeps the urine bottle by his armchair and uses it in situ.

The house no longer feels the same. It no longer feels entirely like a house. The emphasis, once firmly on the children and on child raising, has shifted. We seem to have reached a tipping point, and tipped. Now it’s all about Morris and Nancy. They sit at the center of it, two fat spiders in a web (not fat as it happens but you get the gist). I can’t help thinking of
Charlie and the Chocolate Factory
and the four bedridden grandparents, living in the giant bed in the sitting room being fed cabbage soup. That is how home is becoming. The rest of us are satellite creatures with satellite lives.

An ancillary to this is the feeling that we are constantly on show. The house has to be kept tidy, approvably clean and swept of personality. Overdue bills can’t be left sitting on tables, nor open books, letters, sales catalogs that might provoke comment, any signs of extravagance, unusual foodstuffs, alcohol of any kind, drawings half drawn and half-done crosswords nor anything to do with business. Sometimes when visitors come looking for me, wanting consultation about some Morris-and-Nancy matter, they find me on the sofa reading. Apparently doing nothing.

“How do you get the time to read so much?” one of the care ladies asks me, blushing pink, “because I
never
get the time,” her eyes flickering toward the ironing pile. Our home aides aren’t the kind of people who sit down much, and nor were Morris and Nancy in their prime. Working hours were long, for them, at home as well as the office. None of them associate sitting down with earning a living. Sitting down is something that’s available when all possible chores have been done, late at night or not at all—and there’s considerable kudos attached to never getting the chance. Nancy, when first we moved in, was heard to complain about the state of the housekeeping. “They’re terrible here,” she’d say, looking in horror at the dishes by the sink. “Look at this! It’s terrible.” Sitting down during the day might be construed as immorality. The owning of too many books, to some ways of thinking, is an admission that one misuses one’s time.

Out here, far from everything, a village is a village and also a world. People talk. News and rumor are the lifeblood of isolation. Talking is a major activity and we’re all too conscious of people’s curiosity, their assumptions and misconceptions. Private conversations can’t be had until late at night, phone calls can’t be enjoyed: not in daylight hours when there are likely to be outsiders present. I can’t be seen in the kitchen in my bathrobe (not after 8:00
A.M.
! “Have you had a nice lie-in today? Lucky for some”), nor am I happy to have the children seen in theirs. Judgment, both real and imaginary, hangs heavy over us. Downstairs has become a public zone. Dogs must be locked away upstairs in case they escape. Chris and I start having daytime conversations by e-mail. Doing otherwise risks being overheard, at least before 9:00
P.M.
, when the back door closes the final time and the home care lady is gone. At nine o’clock we all relax. But that’s also Jack’s bedtime. The window of ordinary family interaction has shrunk alarmingly.

The phone calls continue and are on occasion deeply aggravating. The physical therapist rings to ask why we haven’t had the wet room installed that she recommended. From health and social workers, recommendations are usually orders. Someone else rings to report that Morris, at the day hospital, has complained that Nancy’s being unsettled at night is keeping him awake and that he worries we won’t hear him if he calls for help. She is insistent that we install a baby monitor, so we can listen to Nancy and Morris, reassure ourselves that they are sleeping, and be alert to anything we ought to go and sort out. This phone call has a peculiarly depressing effect. The house has become an institution and we are its night staff. And we ought to be aware that a part of our duties is lying awake listening to Nancy monologuing away in the early hours, and Morris shrieking at her to shut the fuck up and go to sleep.

Then one of the nurses at the day hospital telephones to say that Morris is complaining of being lonely. She mentions the name of the day center, the Thursday day center he point-blank refuses to attend.

“But he doesn’t like the day center!” I retort, perhaps too vociferously. “He used to go to it. He canceled it. He hated it.”

“Well, I’m just ringing to let you know that I have booked him in to recommence. He’ll start on Thursday. Okay?”

Morris makes a face when I pass the message on. “I didn’t really have any choice,” he grimaces, though when Thursday comes he goes off on the bus cheerfully enough. What does he really think about the day center? What does he really think about anything?

As if in punishment for our not agreeing to the baby monitor, we have a series of late-evening and early-morning crises. Nancy begins getting up and getting dressed at two or three in the morning, and trying to get to Somewhere Else. I no longer believe the “doorknob prompts” theory. These are breakouts. I find her downstairs rattling at the door that leads from the main hall into the porch. It’s a half-glass-, half-wood-paneled door, a Victorian door, and heavy. When it’s rattled it swings in its housing and echoes through the house like thunder.

“Nancy. It’s you. Couldn’t figure out what the noise was. You gave me a fright.”

“I need to go now. I’m late.”

“Come back to bed. It’s the middle of the night.”

“That’s all right for you to say but I’m not supposed to be here!”

We meet Nancy almost every evening, on one of her moonlight sojourns. The drawing room door opens in spooky slow motion and she shuffles in, waddling from side to side, shoes on the wrong feet, holding some combination of possessions: her handbag, clothes, a pair of shoes, her address book, her teeth in a handkerchief. Quite often she’s singing, to the usual tune.

“When I am young and busy, and the world will have to be, and the thing that comes down is the thing I brought here, and that’s the same to me.”

She will be in one of two moods, black and white. Either very glad to see us and intent on joining in our late-night whisky, or misanthropic and full of gloom. And she can still rhyme.

I feel bad about putting her to bed so early, but this is how it is. Morris has no choice but to be put to bed at eight-thirty; that’s the only slot he could get in the home care schedule, and quite often he’s glad of it, his legs bothering him, bed wanted. Nancy must go with Morris. There has to be some granny-free time and this is it. Nine
P.M.
to 11:00
P.M.
is sacred. I’ve gone the other way on occasion: taken pity on her restlessness, sat with her in front of the television till after midnight, till she began at last to flag, remade the fire, made her toast and hot milk and been tolerant about the ranting. But I can’t do it anymore. Besides which, if Nancy is absent, Morris can’t sleep. He stays awake waiting for her return. He grows agitated, wondering what she’s up to.

Late one weekend evening, while the rest of us are upstairs in the family room, there is a sudden hullabaloo from downstairs. A frantic impassioned yelling. It takes a few moments to register that it’s somebody calling out Chris’s name and sounding desperate about it. Chris and I jump up and go down, insisting the children stay put.

“Oh god, it’s Granddad!” Millie cries out. Jack bursts into tears and Caitlin follows. Millie joins in and the three of them stand on the top landing, snuffling and clutching each other.

When we get to Morris’s bedroom the door’s open and he’s by the threshold, on the chair at the end of Nancy’s bed. He’s managed to stagger to the door and open it in order to shout for help, but has not been able to get further.

He looks ghostly, yellow, terrified.

“Oh, son,” he says, emotionally. “It’s Nancy. My Nancy. I think she’s dead.” She’s lying on her back, utterly still with her arms by her sides. Chris listens to her chest and puts his ear to her mouth. Then he listens to her chest again.