Keeper: One House, Three Generations, and a Journey Into Alzheimer's (24 page)

Chapter 26

Any idiot can face a crisis; it is this day to day living that wears you out
.

—A
NTON
C
HEKHOV

W
INTER CREEPS IN MUNDANELY, UNSPECTACULAR
with a gray wind. Wallace Stevens wrote that “the mind is the great poem of winter.” Nancy’s mind, perhaps. It’s somewhere frosty winds moan, earth stands hard as iron, water like a stone. All human warmth has gone.

She’s passed beyond some unnamed, unmarked point. She’s unhappy and angry nearly all the time, and when that’s true, the power of unhappiness and anger is lessened. They begin to seem inauthentic. As caregivers we become desensitized. Unhappiness and anger are Nancy’s defining characteristics, and the few residual things that made her herself are fast fading. Her knowing her Christian name, and her hanging grimly on to the idea that she lives in Edinburgh: these are really the only two things she any longer knows for sure.

I’ve done a lot of research on dementia, but this doesn’t make me any better at excusing her behavior. I do excuse it, intellectually. I know what it means and what it doesn’t. But emotionally it’s much more difficult, and I find that I’m behaving accordingly. Her being angry all the time, her seeming to single me out for particular contempt, has switched off something in myself that used to feel responsible for her being entertained, for her life having
value
. I might have observed something causal in the chain that’s got us here. She becomes more difficult to handle and thus harder to like, and I react to this by being less friendly and less keen to spend time with her, which (possibly) makes her more difficult to handle.

It’s hard to love somebody who hates you. It’s hard to care for her, in either sense. The Book says it isn’t Nancy to blame—not really, not in any meaningful sense—it’s the plaques and tangles. Validation theory disagrees. It says that people with dementia become angry because they are trying, before dying, to express feelings and ideas they have long suppressed, which validation workers help them to release. It seems that Nancy might hate me, after all, might always have hated me. I’ve asked this question before and don’t feel any closer to an answer: Is the person that Nancy has turned into as a result of the disease someone new, or someone who appears new because previously hidden? Validation has it that dementia exaggerates aspects mined deep from the buried self. I’m not sure how much credence should be attached to this idea. After all, how could anyone know what was or wasn’t buried deep? And what does this say about human nature? Almost all of the Alzheimer’s sufferers I’ve heard of have become abusive and contrary. Is it really possible to make a case for the greater part of humankind suppressing feelings of rage all their lives, feelings only let out of the box by the loss of inhibition that dementia brings?

Looking for more on this, I read a book about dementia caregiving that takes the playing-along-with-delusions approach, and simplifies it into three golden rules. It insists that all that’s wrong with Alzheimer’s sufferers is the loss of short-term memory, and all that’s needed to make them happy is to stop asking questions, to stop contradicting anything they say, and to live in the past with them unquestioningly, using sympathetic conversational techniques, because the long-term memory is still intact and working perfectly logically in its way. It claims that there cease to be behavioral problems and upset once the caregiver acts accordingly—for instance, in going along with a loved one’s impression that it’s 1970 and they’re both teachers at a school—and advises that the caregiver brief everyone else the ill person comes into contact with, so that others can join in with the dementia drama. Caregiver, family, friends—all should agree to leave the world of real time and engage with an individual’s “dementia reality,” another dimension in the present where time is more bendy than even theoretical physicists imagine. Could the ballad of Morris and Nancy be rewritten as an illustration of the truth of this? I doubt it. Not only because my experience of Nancy’s dementia convinces me that memory loss was just the start of her story, and not the story itself, but because Nancy wants only very rarely to engage with her past self. She’s much more concerned with grappling with the present, caught at the meeting point of the two worlds, a place at which neither past nor present makes sense, and that seems insoluble.

In terms of keeping her occupied, I’m a burnt-out case. Nancy doesn’t remember making pastry/collecting eggs/listening to Beethoven; not a trace of it survives the subsequent five minutes. Is there a point to having experiences we don’t remember? Yes, probably, in terms of mood. But Nancy’s mood is no longer improved by my giving of myself. Quite the reverse. That being the case, I have justified my withdrawal. There are other demands on my time. Children and work, preeminently, both of which have been neglected in the last eighteen months. But it’s more than that. I’m bored with Alzheimer’s. I’m bored with her decline. I’m bored with being yelled at. I’m bored with dealing with it all.

Unfortunately for Nancy, this is the last thing she needs. What she needs is twenty-four-hour, one-to-one love, and new ideas about what she might do in the great and engulfing boredom that comes from not remembering. The problem of keeping her happy is desperate and paradoxical. Her presence in the moment, where she now lives, is one of constant questing for something: something to do, the
something
that she should be doing. The last thing I tried to do with Nancy was over a month ago. I took her into the dining room and asked for help with setting the table. She couldn’t put the plates out. She couldn’t put the cutlery at the sides of the plates. She ended up throwing the forks on the carpet. I think that might have been the moment at which something in me gave up.

D
OWN
. M
ID
-N
OVEMBER
.

I’ve woken in the morning lately feeling heavy. It’s hard to get out of bed. I can’t face the day. I surprised Chris by saying to him, “Life is just work, isn’t it, hard work, unrelenting and hard. I’m beginning to wonder if it’s worth it.”

I feel as if I might be vanishing. My physical weight might just be imaginary.

“All I do is service other people’s needs,” I say to him. “I don’t think I really exist. Not as something independently. Just a function.”

I start thinking about being dead. Not thinking about it, but imagining, fleetingly, what it would be like not to be here. I have transient longings for life to stop, but what I mean is This Life. It’s just a way of despairing. The idea of life really stopping—a terminal illness diagnosed and definite—would be quite a different matter. There’d be constant pleading with a hoped-for deity, then.

I am beginning to find it difficult to make housework happen. Physical objects are becoming more powerful than I am. It’s a huge effort to rearrange them in the usual everyday way. Cups and books and laundry have become uncooperative. I am not any longer sure that I can bend the world to my will.

I am no longer a person who speaks freely. There’s a lot that can’t be said and plenty else that can’t be said in the public spaces of home. I have secrets, though I’m not sure what they are. The framework of secret keeping is present but not the content. No one who lives here is frank any longer. Unsaid things become a kind of pollutant. The things that some people won’t say. The things that other people daren’t.

I begin to be convinced that I have early-onset Alzheimer’s. I’m losing my memory, groping for words. I forget easily, can’t seem to hold things in mind, need to make lists, have become mathematically illiterate. I begin to understand what a train of thought is, the sequential synaptic journey from one carriage to another. I lose my train so easily now, grasping for a foothold; if I could only get back onto one carriage along the sequence, I’d be able, surely, to revisit the whole train, but it’s not happening. I think about things and think about them and develop them and tell myself I’ll remember and on the way to find paper and a pen they’re gone. There’s a name for this syndrome but I only discover it later. Caregiver’s dementia.

I write long e-mails. Some of them are sent, though most are severely edited. I reread before pressing Send and think, What
tedious
self-pitying drivel; you can’t burden your friends like this. Some days I do burden them and their kindness in responding is almost unbearable. It can’t be done every day. It’s boring for people to hear it and keep hearing it. Not when there isn’t any resolution possible other than death of the aged dependents. Nobody could be so crass as to hope for that.

And I mind people knowing. I don’t want pity. I think of my state of mind as failure: Looking after aging parents is a normal fact of life for millions of people, after all. And it’s the right thing to do. It’s impossible to argue otherwise. Life has a circular shape. First we are helpless and mothered. Later, the mothers are helpless and mothered in turn. That’s how it works. It’s ungrateful, selfish to abstain from obligation. It smacks of the worst kind of individualism, of duty overthrown by the will. Me me me.

Gandhi said, “The best way to find yourself is to lose yourself in the service of others.” Which is ironic, because I begin to feel an indefinable loss of substance. (It isn’t, of course, ironic in the least. I refuse staunchly to lose myself and thus will never experience Gandhi’s revelatory self-dissolved identity.) I’m becoming intolerant. I feel bad about my tolerance levels dropping. Protest is a source of shame. I should put up with verbal abuse because the abuser can’t be held accountable. If I don’t tolerate it, if I shout back, then I know that I have put myself into the wrong. I put myself in the wrong more and more. I’m bad-tempered and demanding. I’m sarcastic with Nancy, impatient with Morris. I become sour with the children, with Chris, with people on the phone.

All this has physical repercussions. I eat the wrong things, drink to excess, put on weight. Exercise feels like it will take too much out of me. There isn’t enough of me left to play with the children or ride a bike. Taking the dogs to the beach feels like a major undertaking. Coming back is exhausting, my heart racing and thumping up the casual hill. I collapse on the sofa and sleep.

“It feels like a life sentence, this task we have taken on,” I say to Chris, and then, in a silly accent, “We should not have made this bargain,” a
Star Wars
joke. It’s important to go on making light of things.

How to bring up the subject of permanent residential care? It’s not easy when your relationship has dwindled to the surface dwelling and pragmatic; even less so when your relationship has
always
been surface dwelling and pragmatic. Morris doesn’t want to face the inevitable. Big subjects are shrugged off. Attempts to talk about the future are repelled: The future’s the future; it will come and then we’ll see, won’t we?

“Can we cross that bridge when we come to it?” he says, exercising his most boyish smile.

The thing is, he’ll never come to that bridge—not in his own mind, anyway, even though I can see that we’re standing on it right now, and have been for some time.

I read and reread all I can find about dementia. The grim books are piled by the bed. What I’m looking for, though I don’t admit this even to myself, is reassurance that this will all soon be over, that we are entering end game. I want to see it in print, that we are approaching the beginning of the final phase, and that somebody soon will see that Nancy needs to be elsewhere. “Once the turds are in the cardigan pockets and she will only eat biscuits.…” is how this craved-for paragraph will start. But I wouldn’t wish the final stage on anyone, not least my mother-in-law. What I want for her, really, is to die peacefully at home in bed before getting to that point. That would be the best thing for her. And for those who love her. Her life seems to have become a prolonged form of suffering. “You wouldn’t leave a dog in that state,” Nancy’s voice says from the past. Among her papers in the desk, we find a yellowing membership pack, at least twenty years old, from the Euthanasia Society.

I
T’S OFTEN SAID
that people don’t die from Alzheimer’s, but from complications arising. It’s true that many dementia sufferers die of the conditions that overwhelm the old: blood clots, stroke, water infection, pneumonia, or blood poisoning from infected bed sores (Auguste Deter died of this). But people do die of Alzheimer’s. If patients live long enough, brain atrophy will get them in the end, the brain stem under attack, the body-maintenance circuits going down like city zones in a power failure. It makes the hairs prickle on the back of my neck, watching the film
2001: A Space Odyssey
and hearing the quiet panic of HAL, the onboard computer, talking as he’s being dismantled and saying, over and over and in a determinedly quiet and rational way, that he can feel his mind going, and then admitting that he’s afraid.

The Internet is thoroughly trawled, in search of camaraderie. Camaraderie at arm’s length. I’m looking for others who wish their loved ones would die and feel degraded by their hope. Instead, I find the opposite. I come across the blog of a woman—let’s call her Marigold—who has decided against institutional care for her Alzheimer’s-stricken husband, and has kept him at home throughout a terrible final stage. She reports going through a phase of profound doubt about her decision. But then her story takes an unexpected turn, about which she’s evangelical. She’s found a way through, by embracing her role as caregiver, and, unlikely as it seems, finding joy in it. She sees her role as a privilege, almost a sacrament. It’s become a spiritual awakening for her. I read all this avidly but fail to be convinced. I find myself agreeing with her friends, the ones who plead with her to find residential care and not let two lives be spoiled when only one need be. That’s how I am now. Hardnosed about numbers. A utilitarian.

People ask me how I am. “Oh fine, fine, though Nancy’s hard work,” I tell them. This is the person I’ve constructed: the cheerful coper. A forgery.