Keeper: One House, Three Generations, and a Journey Into Alzheimer's (25 page)

Sydney Smith, the essayist, farmer, and founder of the
Edinburgh Review
, wrote a letter to his friend Georgiana Morpeth in 1820, advising on a twenty-point plan for dealing with depression. “Always take a short view of life—not further than dinner or tea,” he advocates, which is good advice, at least if somebody else is cooking. He also suggests that she live as well as she dares, take tepid baths, get as much exercise as possible, and see people who amuse her. “Avoid poetry, dramatic representations (except comedy), music, serious novels, melancholy, and sentimental people,” he writes. He tells her to confide in her friends. “Low spirits,” he says, “are always worse for dignified concealment.” He adds, “Don’t expect too much from human life, a sorry business at the best.” Nothing is said about vodka, but I suspect he may have disapproved.

I disappear whenever I can into a book, taking solace in other lives and others’ eloquence. I am hungry for proxies. I become particularly keen on people in trouble. Biographies of the besieged, bankrupted, and maritally abandoned are particularly welcome. I have repetitive, variant dreams about being trapped in buildings. I try to negotiate broken stairways, stairs that turn into steep ramps or ladders with rungs missing. I need to escape out of windows onto ledges, down onto lower roofs, walls, slipping unseen into dark gardens. I’m chased by faceless, unknown enemies, from whom I must hide.

I am supposed to be working when the caregivers are here. I try. I give every impression of working. But it’s all done without breaking the surface of imagination. I’m one of those water boatmen whose long feet straddle the top of the pond, indenting it like a skin, deep water stretching away beneath. I can’t seem to go beneath the surface of the novel anymore. It occurs to me that perhaps this is how I am now, this is what I am, and what I will be when caregiving is over with. I’ve changed for good. I’m no longer a writer. Marigold’s transformation has taken place, a darker version of that, inverted, its subject ungrateful and in revolt, like one of Milton’s rebel angels.

I go out onto the headland, getting as close as I dare to the cliffs, which are bronze red and steeply raked, the sea crawling up them with agitated gray fingers. I go down onto the beach, enduring the wind’s ranting and roaring, showering me with stinging sand, and sift through stones on the shoreline, looking for something perfect and lovely. Tennyson comes into my head.

Strange, that the mind when fraught
With a passion so intense
One would think that it well
Might drown all life in the eye,—
That it should, by being so overwrought,
Suddenly strike on a sharper sense
For a shell, or a flower, little things
Which else would have been passed by
.

Time moves very slowly with Nancy, unendurably so. Empathy takes me into her world and I don’t want to be there. Wherever she goes, fear goes with her. How will it end, this hideous ticking-away day? There is no relief. She has begun to be severely carsick and throws up even on a trip to the village. The caregivers are housebound with her. The weather’s increasingly stormy and she paces like a caged cat, growling at the world outside her bars.

Chapter 27

One’s real life is so often the life that one does not lead
.

—O
SCAR
W
ILDE

I
’M BETTER THAN IN
N
OVEMBER, BUT
I
CAN’T SEEM TO
stay in a good mood, or in any mood. The alarm clock, set to local radio, switches on at 7:30 every morning, and the room fills with dread at the prospect of the day. Chris and I lie in bed listening to the presenters in the dark. Cattle prices, sheep sales, council controversies, travel news, sporting and artistic triumphs, lengthy descriptions of lost and found cats. The wind howls round the house. It’s black dark when the girls go to the end of the drive to meet the high-school transport.

I’m beginning to feel afraid, though it isn’t clear what there is to fear. That I won’t be able to do it anymore, perhaps. That Nancy will hurt one of the children and that I will hurt her. That she sees through me, my plastic attempts at love. That this is a test of character that I’m failing, D minus. That I will say something to Morris I will always regret. I’m irritable with him and his apparent not caring. I’m having thoughts and feelings of which I’m ashamed. Dislike. Resentment. Regret. Things a caregiver isn’t allowed to feel; our moral relationship isn’t individual, but universal, cultural, social. Morris is so far in denial now that he no longer registers Nancy’s behavior as anything unusual. Oblivious, he affects puzzlement if I bring the subject up of his taking more of a role in entertaining and watching over her. He sees a magazine piece I wrote about our lives with Nancy and is shocked by it—not because I wrote it, but because, as he tells me, he’d no idea that things had got so serious and gone so far.

December contrives to be both vile and uplifting. The weather’s atrocious but Christmas with children is a guaranteed solace. I am busy and the calendar fills up and I find, on some days, some half days or half hours, that I feel almost normal. The downward spiral is also an upward one. That’s how spirals are.

I like the peninsula Christmas, the modesty and gusto of its series of concerts and events, its precommercialized spirit. The village lights are unshowy in primary colors. The tree in the square is tall and twinkly, and held down by guy ropes so that the wind can’t take it. The official village tree lighting is preceded by the Salvation Army, at length. There was no music last year (we gathered, the lights were switched on, we funneled into the hall for mulled wine), but this time the band swings into action with a program of carols to get through, out in the square, and we’re all caught out, in thin coats and hatless, shivering as we sing along.

Nancy has a new friend. She finds her, unexpectedly, standing at the dogleg from rear passage to hall. An expanse of wall there has been enlivened by an Arts and Crafts mirror, a large rectangle with a carved oak frame. Nancy finds her new friend here, three-dimensional and in color, backlit by the glass outer door. It’s shocking to discover that she no longer recognizes herself. A year ago, compulsively washing her hands (this urge has passed), she would have a good look at her reflection while doing so, adjusting her hair and muttering her displeasure at being so dilapidated. The year before that, she could still be funny about it. “God, but you’re ugly,” she’d say, laughing. Self-recognition is a major hallmark of consciousness. Chimps, dolphins, and apparently also elephants recognize their own reflections. Elephants are the newest additions to the list: an experiment in 2007 at a New York zoo found that once they got used to the mirror, they’d use it to have a good look inside their own mouths. Nancy’s loss of self-recognition is, it seems, to do with severe right hemisphere damage, right frontal lobe damage.

Not that talking to herself in the mirror is alarming in itself. People talk to themselves all the time, with or without a reflection on hand. When you think about it, this is rather odd behavior. Who is it that’s talking and who listening? Perhaps it’s simply and unmysteriously true that we’re all two people, two in one. One of us, the actor, is out there in the world, interacting and reporting back, doing things and saying things, out on a limb, a free agent. This self might behave badly, be easily led, go astray, come back with ludicrous notions or shameful confessions. The other one of us is deeply embedded, the sum of everything we know, and thus is infinitely wiser and more cautious. That’s the editor. While the actor’s out shopping, the editor stays at home in the mind, and makes judgments.

“You were so stupid to buy that jacket.”

“Shut up, it was half price.”

It’s undeniable that there’s a dialogue going on.

People refer to this internal double act all the time. “I’m not myself today,” they say. “What was I going to do?” “Why did I do that, why do I do these things?” and my personal philosophical favorite: “What do I think I’m doing?”

Sometimes, we’re hard on ourselves. We speak of ourselves as dual creatures: self-knowledge, after all, requires a self and a knower of self, which seems to leave the field wide open for Team Descartes. The Cartesian view isn’t needed, though, if you accept that consciousness and self aren’t strictly equivalent; that self extends beyond and below what we know of it. Aristotle said, “We are not able to see what we are from ourselves.” We do what we can. Polonius, in
Hamlet
, tells his son, “[T]o thine own self be true, / And it must follow as the night the day, / Thou canst not then be false to any man.”
I know you better than you know yourself
is probably the most irritating thing anyone can tell you (other than stuff about Aristotle).

It’s universally agreed that having a dialogue is better than having a war and perhaps that’s the point of the inner conversation. Different parts of our selves, instinctive and rational, conservative and liberal, get to debate things. That’s how the mind seems to work. That’s how information is presented and assessed, teased out, opinions formulated and actions decided upon. The editor doesn’t always triumph. Sometimes other parts of the brain win the argument. The gut instinct, for example, which is delivered via a red phone from the limbic system.

“This man’s trouble.”

“Nonsense. Just because he has tattoos.”

“This man’s trouble, shut the door on him.”

“He showed me his card, don’t be so paranoid.”

“He’s trouble. Look, I’m shutting the door if you don’t.” Slam. Locks are shunted into place.

“Well, I hope you’re happy now because you look like an idiot. He was from the electricity board.”

“He was a fraud. Couldn’t you sense it?”

“Ridiculous.”

It seems sometimes that Nancy is traveling through what survives of her life asleep. Life is so odd, so unaccountable, so disengaged from reality to her brain-damaged perceptions, that it might be like being in a dream. The once Amazonian-sized forest of nerve cells and axons and synapses, its millions, trillions of connections, seems now to have reduced to just a few well-trodden tracks through a wood, a few broad footpaths that have been worn into deep ruts. The rest looms dark and unknowable. Things seem out of control, bizarre, to her. People around her look familiar but unfamiliar—I think sometimes that it must be like a constant process of déjà vu. They make statements that cannot be true. She can’t convince the people in the dream that her life is elsewhere and that they are all, all of them, engaged in the joint hallucination that takes place through the looking glass. The dream goes on and on, for months and years, and there’s no waking up. Jung wrote that it’s likely we continually dream, but that consciousness makes so much noise that we’re not aware of it. What if Nancy’s consciousness has stopped making much of a noise? Is it a kind of waking dream that takes its place?

N
OW THAT SHE’S
found the woman in the mirror, Nancy’s talking to herself for much of the day and her mood is miraculously lifted. I find her there one afternoon as I come in from outside. I come up behind her.

“Hello!” I say. “Looking in the mirror again? How are you looking today?”

“Here’s my friend!” Nancy says, gesturing toward herself and looking absolutely delighted.

“Hello, there,” I say to the grinning reflection. “And who are you?”

“She won’t tell you that,” Nancy says. “I keep asking her to come in, but she won’t.”

“How’s she going to come in?”

“Through the door,” Nancy says. “Through here.” The mirror is a doorway. She takes a step backward and her arms are raised, beckoning. “Come on then. Come on. Come in for a little while. Won’t you come in? Because I’d love it if you would.”

“This is a mirror, isn’t it, Nancy?” I say. “Look.” I knock on the glass. “It’s a mirror, and that’s you.”

Nancy looks at me as if I’m really idiotic. “I know that. I know that. Do you think I’m stupid?” She laughs at her reflection and it laughs back. “Look! Look! She’s laughing at you,” she says.

“But that’s you,” I say. Why can’t I let it go? I don’t really know. Perhaps it’s to do with being a mother, this habit of correcting people’s misapprehensions. Or perhaps it’s something worse.

“That’s you, isn’t it?” I say, waving at her in the mirror. “Look. I’m waving at you. See, here’s my hand waving”—she looks briefly at my hand—“and here’s my hand again, waving in the mirror.”

“That’s my friend,” Nancy says.

“Why don’t you wave, too?” I say.

The woman in the mirror is frowning.

Nancy’s face falls. “She doesn’t like it,” she says.

“Okay, then.” I am conceding defeat. “I’ll leave you two to chat.”

When I pass by again an hour later, seeing to laundry, Nancy’s still there, chatting away to the mirror. And she’s smiling, laughing, giggling with her friend. I go into the kitchen and make a pot of coffee and sit staring at the cup. Nancy isn’t always unhappy. Nancy still has her moments of fun. She’s getting something out of life. She doesn’t always hate you. She doesn’t hate you at all. What on earth made you think that? How could you be so deranged? And how—oh dear god, this is appalling—how on earth could you wish her dead?

W
E DECIDE NOT
to do any more bed-and-breakfast, a decision sparked by discovering that one of our guests this year has stolen quite a number of DVDs. We’re not sure how many. We only cotton on because Chris asks if anybody knows where the Humphrey Bogart films have gone—all of them are gone, it transpires—and then we discover more films are missing, another twenty or so classics. The idea that somebody friendly, somebody who wrote admiringly in the visitors’ book, put thirty or more DVDs in his suitcase, shook our hands and thanked us very much again for the fantastic weekend, and drove off with our stuff, is fatally dissuasive.

By mid-December, I have a permanent sharp pain in my head and neck and the doctor diagnoses tension, bad posture, a trapped nerve. He prescribes a muscle relaxant (tranquilizer), which I daren’t take. Jack is ill with one of his epic bouts of tonsillitis, and in mid-December he’s admitted to the men’s ward at the local hospital—there’s no children’s ward—to put him on a stronger regimen of drugs and monitor him. I don’t sleep. I sit downstairs in the in-laws’ sitting room, warmest in the house, at 5:00
A.M.
with herbal tea. Nancy is up and wandering the halls. She comes in the sitting room door, then goes out through the kitchen saying, “Well, you’re no use, are you? Typical, typical,” and puts herself back to bed. We go to the hospital in the morning and find Jack up, dressed, playing PlayStation. They’ve found a heart murmur and will want to see him again. He’s discharged and comes home. Purple and white and gray.

Jack, the trapped nerve, the stresses of the night shift, anxiety about making the children’s Christmas happy—evidently it’s all too much. December’s recovery turns out to be veneer. One day when Nancy has been making the perfectly routine complaint that I’m the only person that’s nice to her, but that the children who live here are nasty and call her names, my facade suffers a small additional crack. Small but structural. I leave her sitting on her bed and go to find Morris, landing in Nancy’s chair with a thud.

“I’m at the end of my tether. I can’t stand any more. I can’t. Stand. Much. More. I mean it,” I say. Morris looks appropriately alarmed, which is to say that he looks just the same but his eyes are wider. I seem to be having a breakdown, right there in the middle of
Cash in the Attic
. “Why don’t you respond? Say something!” I tell him. “Are you listening? I’m telling you something important, Morris. I can’t go on with this. I’m at the end of the road. Do you understand me?”

“Yes. I understand you,” he says, looking at me as if he’s the bank teller and I’m the madman with the gun.

I
’M ON THE
Internet a lot, finding refuge from the too-specific gravity of life in the weightless world of e-mail, which floats free of consequence. But Alzheimer’s has its teeth in me and before long I find myself trawling dementia forums. There’s a lot of guilt out there: blame, self-blame, and confused thinking. A physician in the
New York Times
remarks that, though American citizens believe that the modern generation of elderly is being dumped in vast numbers in care facilities, the reality is rather the opposite, with a huge percentage being cared for at home. I think about that word
dumped
all day. All across the World Wide Web there is praise for those who keep caregiving in the family, and the widespread assumption that opting for residential care is a kind of failure, only mitigated by personal circumstances. Rita Hayworth’s daughter, interviewed about the care of her mother and whether she’d considered an institution for her says no, never, not even at her worst, and the interviewer hands out the appropriate admiration. Even I, the battered soul and incipient alcoholic, whose blood could be used to inoculate others against the taking in of parents, can see that hers is the right answer, the honorable answer. Recognizing this, people agonize on the dementia forums about whether they can go on, looking for permission from their peers to capitulate. Among caregivers who have capitulated, who’ve gone for the nursing home option after years of keeping loved ones with them, there’s almost unanimous self-loathing for giving up. The words
giving up
are used a lot. That and
dumping
.