Keeper

by Andrea Gillies

  There’s no room in the nursing homes, anyway. There are waiting lists. And it will cost a fortune, eroding their life savings away until the money’s all gone. How can we be responsible for the loss of their life savings? It’s not something anybody could enter into lightly. There’s only one private home in our county and it doesn’t have an Alzheimer’s unit. Nancy isn’t severe enough a case, nothing like severe enough, to be taken into council-sponsored care. That has been made very plain. She’ll have to be completely doolally, physically frail, incontinent, not eating, and have sawn off one of Jack’s limbs with a bread knife, before urgent action will be taken of that kind. The state of things is that I am lumbered, and am resentful about it, but resigned. That is how I am. But I don’t say that.

  I say, “How am I? I’m okay. Functioning. But it’s hard work and getting harder.” That’s on a good day. On a good day, I’ll follow this up with the latest Nancy anecdotes and will tell them in such a way that we both end up laughing, my interlocutor and I. On a bad day, I’m impatient with the phone person and incapable of being funny about the anecdotes. I sound terrible. I’m aware of this, and I mind. I wish they’d stop phoning to sympathize because in this situation, pity isn’t any use, and an emotional phone conversation throws long shadows on the day. The worst of it is that nobody ever phones to sympathize in brief. The conversations go on for twenty, thirty minutes, forty. We go through it all again. Her behavior. Her condition. Her decline. Morris’s state of health and prognosis. His behavior. His condition. His decline. His interaction with Nancy, his desperate unhappy bullying. The effect that all the above are having on the family.

  I become markedly less grateful for official concern as time goes on. I hit the ball back over the net with topspin. “Hello there, bad timing, unfortunately, just going out.” They ask if they can ring back. “Tell me what it is you want, if you like, but can you make it quick? I’m really busy.”

  I interrupt them midstream. “Thanks for this, for phoning, but now I need to get on.” I invent things. “Can’t talk now, Nancy is in the bath.” “Nancy and I were just about to play badminton.” “Sorry to interrupt, but I see Nancy making off down the drive.” I start making my answers short, pointedly so. Eventually it’s open rebellion. “Look, can we not have any more meetings? Can you not call quite so often? I already have very little time to myself and having meetings isn’t what I need. Sympathy isn’t what I need. If you can suggest anything we can do to make Nancy less angry and Morris less depressed and me less tired, that’d be great. Otherwise, perhaps you could e-mail? E-mail’s better for me.”

  PEOPLE ARE OFFENDED left, right, and center. They’re not accustomed to being headed off at the pass. Perhaps they categorize my unwillingness as indicative of neglect? Perhaps, in their training, their trained way of seeing the world, my being flippant is considered a marker of something. I don’t know. They must be accustomed to other sorts of people being caregivers, I decide. Perhaps they’re used to people who like this endless going over things. It must be seen as therapeutic, cathartic. It’s supposed to be bad to bottle things up, isn’t it, unhealthy? I, however, am of the opposite view. I don’t relate to the lanced-boil metaphor. I tend to think that a problem shared is a problem doubled. Or quadrupled. A problem shared, hereabouts, is generally a problem that’s gossiped about.

  March brings its usual last blast of winter to blow away the spring. We find ourselves snowed in for almost a fortnight, transport canceled, schools closed, the world quiet in that uniquely quiet, snow-muffled way. We don’t get that much snow, but the little that falls is blown impressively into drifts sufficient to immobilize a bus, and subzero temperatures freeze the slush on the roads, and that brings the whole region to a halt. We can get no farther than the village shop. Potatoes, cabbage, frozen fish, bacon: these become, temporarily, a big part of the diet.

  In late March I have a new project. I organize myself a whole other life. A house in Turkey. We’ve sold our ruin in Normandy that we bought to renovate and never will, and want spring and autumn sun. The project starts as a house in Bulgaria, as I have seen houses on eBay going for £8,000, though Bulgarian trawling ends in a cul-de-sac. It’s Greece we want but we can’t afford Greece. I go online across the water into Turkey, and find that a tiny cement house by the sea is possible at the £25,000 level. And so I spend two weeks doing nothing but chasing leads, drawing up a short list, pestering agents. The in-laws, Chris, and the children are kept at arm’s length. Dealing with the inevitable, inescapable day-to-day slog, unpaid and thankless—running the household, dealing with Morris’s mild but needling hostility, coping with Nancy’s bizarre and darkening world—all of that, I can deal with because round the corner, in laptop-land, life-changing things are afoot.

  Chapter 16

  One need not be a chamber to be haunted;

  One need not be a house;

  The brain has corridors surpassing

  Material place.

  —EMILY DICKINSON

  WHAT 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.