Alzheimer’s takes away our memory and our selves

Not so very long ago I found that I (a writer, editor, mother of three, but otherwise a free agent) had volunteered to become a full-time carer for someone with Alzheimer’s: my mother-in-law, Nancy. She and her husband, Morris, came to live with us in a vast Victorian house surrounded on three sides by sea in the far, far North of Scotland.

Previously I’d thought of my “self” as something inviolable, something that was permanently me. The experience of dementia, of seeing it taking hold, undermined the remnants of faith in myself as a soul. Alzheimer’s taught me that I am a biological creature: that what we consider as self is a construction contingent entirely on health.

I started a journal. Nancy’s two years with us coincided exactly with her protracted crossover from Real World to Dementia World. The timing wasn’t a coincidence: moving her from a house in which her long-term memory could operate, and in which she had some residual mapping, accelerated the change.

In Nancy’s unravelling grasp on things, nothing made sense and this was a continuing, distressing thing to witness. Through the looking glass, nothing needs to add up any longer, no attempt is made to grapple with the unnavigable present. She’s much happier; when last I saw her, singing and dancing.

As the days went on, the tone and content of the journal changed. I tried to think about what lay beneath the surface of the disease and what it must be like when the abyss of amnesia opens constantly at your feet. Some days it appeared that Nancy’s brain was compensating by creating its own answers: fictions that kept her afloat. She improvised reality from minute to minute.

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 thought about this the odder it seemed. I wrote the journal in bed, early in the morning, the rest of the family asleep; thinking, apparently randomly, about a whole array of insignificant things, and in making decisions, reflecting on them, I was becoming a new person, albeit in a trivial sense.

Where, I wondered, was Nancy in those periods of sitting in her chair, hair twiddling and hand rubbing, seemingly preoccupied? The little output that did reach us, the things that she told us over and over, can be summed up thus: 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 to collect me; I’m a young woman and unmarried; I don’t have children; I must get home; I have to leave now, I’m late. She was afraid of mirrors: an old lady looked out at her.

Waking early, listening to the wind 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 the shape the cairn is taking. Our selves are fed by 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 “tell me something about yourself” without recourse to biography. Even responses that try to avoid straight biography — “I am intelligent, curious, anxious and usually hungry” — rely on memory entirely. You know yourself only because of your memory. When Nancy came north, she could quote her name, but that was all.

Who I am is what I’ve done and experienced, and what I think about it; how other people make me feel about it, how the books I’ve read and films I’ve seen make me think and feel, creating a web of connections. I have a library of self at hand. I can wander its halls, choose whichever bit I like, read from it and enjoy having new ideas about the past.

The only (inadequate) way I could relate to what Nancy experienced was to recall moments when I hadn’t been sure where I was. Coming round from an anaesthetic, or waking in a strange hotel room, with the wrong furniture, the wrong shadows, the door in the wrong place and that mildly alarming recognition that this isn’t home.

Nancy said to me almost every morning: “I’m sorry, I don’t know where I am.” In the circumstances that seemed a remarkably gracious response. It was her face that betrayed her fear. The reason I’m not afraid on waking is that, stirring and stretching in bed, everything around me is explicable. Personal history isn’t just about the CV, executive or social. We have history with everything surrounding us: a chair used for reading or a sofa owned since the children were small.

This isn’t just sentimentality, but context. Imagine waking 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 in the other chair that people tell you is your husband, but whom you’ve never seen before. If your brain were still intact enough, 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. Sure enough, if doors were left open, Nancy was forever leaving, trying to get home to the past.

When I get up 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 bowl and the whisk. There are leftover potatoes, garlic, some tomatoes for the omelette. As I dress and go down to make breakfast, I’m running through visual anticipations of how it will be, barely consciously if at all; each step conjured and satisfied in turn. In a way, I’m remembering things before they happen. It is memory that brings me to my life.

Andrea Gillies, the winner of the Wellcome Trust Book Prize 2009 for Keeper (Short Books), her account of caring for Nancy.