Keeper: One House, Three Generations, and a Journey Into Alzheimer's (20 page)

Righto, then, I think. Just leave her be. Get your own breakfast. I eat some porridge and drink some coffee and read yesterday’s
Times
. Then I go back into her sitting room.

She’s sitting in her armchair with that same unseeing stare, hands rubbing rhythmically. Her lap tray is on the table by the window. Her orange juice has been drunk, and her tea, and her bowl is almost clean.

“That’s great, you managed it all this morning,” I say. Then my eye is caught by the fireplace. The Weetabix is on the hearth in a scraped milky heap. As I approach I see that the orange juice and tea have been poured onto the grate among the cinders, over a wigwam of toast. Nancy sits rubbing her hands quite frantically together, the pace increasing as I approach, her face streaked with crimson and blue, her expression defiant.

“What on earth have you done?” I say. “Why on earth did you do that?”

“What?”

“That. Look. Cereal all over the hearth.” I poke it. It’s setting into quite a useful Weetabix-based cement.

“I didn’t do that. It was that other woman. That bitch, the other woman.”

“Come over here,” I command.

“I told you, I didn’t do it,” a high wavery voice insists. “It’s nothing to do with me.”

“Come over here. Come here. Come here,” I say, attempting authority.

She gets up, sighing.

“Look,” I say. “You did that. You made that mess and I want you to clean it up.” I give her the coal shovel and brush.

“I’m not doing anything of the kind,” she says.

“Yes. You. Are,” I say.

“NO.”

“YES. YES YES YES.” I’m shrieking now. I’m losing it. Months and months of holding back and being reasonable have their price and here is their invoice.

“I am sick of you!” I yell. “I am so sick of you and looking after you and the endless bloody drudgery!”

Nancy roars. That’s the only word for it. She roars like a lion, like an old skinny lion with a mangy coat, left behind by the pride to starve. She’s dangerous. She’s a cranky old lion and still has teeth. She swings the shovel toward my head, and I make a reflex movement and it misses. She throws the shovel against the wall, where it breaks into two pieces and falls. She brandishes the brush and jabs forward with it at my chest. I grab it and we’re struggling. She lets go of the brush and has me by the upper arms with tight white fingers. She pushes suddenly and I fall backward. She’s shouting incoherently; I can’t make out the words. I barely hit the carpet before I’m up again and grabbing her. I have her by the upper arms now. Now it’s her turn to topple backward.

“Don’t you ever, EVER, get aggressive with me, you vicious old cow, or you will be in a nursing home before you can say
tea bag!”
I screech. I can’t catch my breath and it occurs to me that I’m going to have a heart attack and die. All I can think is, What if it had been one of the children? What if she’d taken a swing at Jack and the sharp edge had hit home, across his cheek, his ear, his eye?

By the time she falls, in graceful slow motion, onto her bottom on the carpet, still holding on to my arms, rolls onto her back, and is pushing herself upright again, one knee and one foot braced, I am screaming. I can’t remember what I say. I remember that I step backward and am holding on tight to the door handle. I don’t trust myself not to hit her. I’m yelling my head off. She’s standing up by the fireplace now—thank god, thank god that neither of us fell toward it: I have a flash, a vision of Nancy cracking her head on the hearth and going limp. She’s rubbing at her upper arms with both hands and saying, “Oh Christ, oh Christ.”

I slump onto the floor, my back against the door. I’m shaking violently. I can’t believe that I threatened the nursing home as a punishment. Elder abuse. Elder abuse is all I can think of. Strictly speaking it was self-defense—or retaliatory, at least, as she pushed me first—but even so. She has Alzheimer’s. What in hell am I doing?

The rest of the day is spent making ostentatious amends, singing songs, taking her on walks and garden visits, and brushing her hair and making her laugh, all upset forgotten. But when I put her to bed I see that she has bruises. Small, faint fingerprints encircle both arms. Mine are sore to the touch but are unmarked. She bruises easily, dramatically easily these days, but even so. These I inflicted. Aristotle in the
Poetics
describes how
hamartia
, a serious lapse of judgment, can all too easily lead to
peripeteia
, a calamitous reversal of fortune. The dark shadow of
peripeteia
is hanging over me. Guilt, in other words.

I pour myself a (large) glass of malt, noting idly that daytime drinking is becoming the norm, and administer a self-directed pep talk. There’s no point in rising, in engaging, in any of the negative energy because it’s only me who suffers. I give away my power, and I’m not going to do it again. Tomorrow, if the same happens, I will scrape the breakfast from the hearth and leave the room and go find other things to do. I’ll do it quietly and without comment. I will find a way of not minding. It’s not caregiving that’s exhausting, but minding. It’s minding that will make me ill.

I get it all out of my system in the classic modern way. I write e-mails. How could Weetabix lead to violence? In the calm of the aftermath, in cold words on the screen, it’s hard to say. Pauline, a good friend, replies almost immediately. “Course it’s not the breakfast cereal. It’s the incessant drip drip drip, the relentlessness of it. Not surprising that you should crack. She’s okay, I take it, and blessed with goldfish memory, so that’ll be that as far as she is concerned—but dear god, this is real lulu for you. You still sound pretty shaken up. I wish you better things for tomorrow. Poor you. Poor battered soul.”

It occurs to me to worry that the aides will see those faint amulets of bruises and will imagine that they know the truth. It isn’t the first time I’ve worried about what people might think. Nancy is constantly in the wars, walking into doors and tables, tripping over steps, falling out of bed and blackening her eye; do the paid caregivers ever mention the bruising that ensues to the social work department? I launch an Internet hunt on the question of caregiver abuse, and the words in the search box bring up other, unexpected results. Abuse
of
caregivers, and not just by them. Here’s a dementia victim, a husband who killed his caregiver wife with a hammer. Another woman, assaulted by her Alzheimer’s husband, who declares herself afraid of him, describing him as “cunning, nasty, aggressive, menacing.” On the Web pages I glance over, though, these stories are outnumbered by attacks by caregivers upon the demented. Most of them detail a “snap” moment. Most appear to be about male caregivers attacking wives. Some of these have been dubbed mercy killings: a wife strangled by a husband who said he couldn’t any longer bear her to suffer, another with her throat cut. More often, though, the attacks are attributed to rage. Faced with an impossible situation, people can fail in a dramatic manner to cope. Here’s a man who smothered his wife because she wouldn’t stop taunting him, in her demented, perseverating way. Another who tied up and gagged his wife after she’d kept him awake for days and nights on end roaring and shouting; she died. All elicit a mixture of horror and sympathy, the two vying feebly for precedence.

I read wider and come across the Greek myth of Eos and Tithonus. Eos, goddess of the dawn, falls for Tithonus, a hunky Trojan prince. She asks Zeus to grant him immortality, and he does. But she neglects to ask for immortal youth. Tithonus gets old at the usual rate and then keeps on getting older. He becomes senile, and stays that way for eternity. Eos, driven to distraction, locks him up in a room. In some accounts she turns him into a grasshopper.

Ralph Waldo Emerson wrote, “Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely.” This is good advice, though he also wrote, more pertinently, “Sometimes a scream is better than a thesis.”

Chapter 22

Between the essence
And the descent
Falls the Shadow

—T. S. E
LIOT

H
ER MIND IS OPAQUE NOW, HER MOODS IMPOSSIBLE
to read. Does she know that, as Iris Murdoch put it, she’s “sailing into the dark”? Does she spare us this knowledge as a kindness, by speaking in metaphors?

“I want to go home,” she says over and over, and she doesn’t mean to the bungalow we rescued them from, that lonely suburban isolation, the washing piling up, tea made from the hot tap and packets of biscuits for lunch. She means home to her old self. She’s aware that she’s lost her somehow, the woman who was a company secretary, with long painted nails and a wardrobe full of blue jackets, who made raspberry jam every summer, who knitted exquisite baby clothes for each of the children. She knows, but she can’t quite put her finger on it. There are days when the delusions are full throttle. In the throes of the hospital one, she has begged me for medicine for the dying patient in the next bed, all the time standing in her nightdress in the hall.

T
HE
S
UBLIME SEEMS
of no use to me now, in this dark time of bright sunlight. I go out into it desperate for something good, for a taste of the Epic, for help: hoping to encounter something even mildly similar to Wordsworth’s “spots of time / That with distinct pre-eminence retain / A renovating virtue,” but come back feeling far worse. I can relate, at the least, to his pre-visionary moments.

O’er my thoughts
There hung a darkness, call it solitude
Or blank desertion. No familiar shapes
Remained, no pleasant images of trees,
Of sea or sky, no colours of green fields;
But huge and mighty forms, that do not live
Like living men, moved slowly through the mind
By day, and were a trouble to my dreams
.

On bad Nancy days, the really bad days, the beauty out there seems tainted, all of it, by her animosity, which begins to seem like a misconceived fight against disease, against the lights going out, like a misdirected energy in her struggle to emerge from the dark. The anti-Sublime, purposelessly and destructively ruminative, reveals a landscape full of death. Death we think trivial. A broken cat in a ditch. A seagull neatly bisected on the side of the road. A baby seal dead on the beach, and then a dolphin, part eaten before it was washed ashore. I begin to feel an overwhelming, disproportionate pity for the sheep and the bullocks that watch me from their pasture as I pass. It’s all suffering and cruelty out there, I think, stomping along the beach in a summer dress and raincoat and Wellies; it’s cruelty disguised by landscape, by our fetish for views. I blame Wordsworth for that. I come across the archconservative Joseph de Maistre—a man named by philosopher Isaiah Berlin as one of the six Enlightenment enemies of liberty. “In the whole vast dome of living nature,” de Maistre wrote, “there reigns an open violence, a kind of prescriptive fury, which arms all the creatures in their common doom; as soon as you leave the inanimate kingdom you find the decree of violent death inscribed on the very frontiers of life.” Unsurprisingly, this doesn’t help much.

I read that Charles Baudelaire said that de Maistre taught him how to think, and find this quotation from the poet: “We are weighed down, every moment, by the conception and the sensation of Time. And there are but two means of escaping and forgetting this nightmare: pleasure and work. Pleasure consumes us. Work strengthens us. Let us choose.” Yes, I think, that’s so true; work is all that will keep me afloat. I must work and make everything else secondary. Though it’s slightly disheartening to discover that Baudelaire died at forty-six.

I dip in and out of books, following dementia trails like snail tracks across the paper, but seem unable to settle on anything new. I revisit John Bayley’s magnificent account of life with his wife, Iris Murdoch. Her demise seems to have illustrated the fact that though highly educated people are somewhat less likely to get Alzheimer’s, when they do succumb it tends to be an aggressive, fast-acting, fast-forward disease. Iris Murdoch’s Alzheimer’s first presented itself as trouble with finding words. It manifested itself in her last book,
Jackson’s Dilemma
(1995). Neurological study has found her vocabulary much reduced in it. She died in 1999, three years after diagnosis.

More care meetings, more assessments. The professionals come and settle themselves in chairs; they drink tea, they talk to us and make occasional notes. Conversations with Nancy are brief. Nancy is produced, and as is usual when faced with a social situation is utterly charming. Some emergency facility, buried deep, is mined and polished: that of the social bluffer.

“So. Can you tell me your date of birth?”

Nancy’s grinning. “I’ve absolutely no idea. But I can tell you it was a very long time ago; my memory’s terrible.”

The professionals are reassured. They give us quizzical looks. She’s really not at all bad. Crisis, what crisis?

Rita Hayworth (1918–1987), the Hollywood film star, developed Alzheimer’s early. She was diagnosed formally in 1980 but had been ill five years, since the age of fifty-seven, and her daughter says in interviews that she had shown the first symptoms twenty years earlier. Alcoholism confused the issue, but reported agitation, hand rubbing, paranoia, mood swings, vacancy of the gaze, obsessive reorganizing of cupboards—this all sounds like Alzheimer’s. Her daughter reports that even quite late in the disease, her mother continued to turn on the charm with doctors. Asked a direct question like “Who’s the president?” she’d switch into flirtation and change the subject. The performance was remarkable, it’s said; it was as if she was constantly auditioning. That sounds familiar. Nancy’s winning smile and stock of phrases dredged from the past are a form of doctor repellent.

J
ULY BRINGS A
series of bed-and-breakfast food sensitives. They bring their own tea bags and ask for hot water at breakfast. They want to discuss what’s in the bread, the provenance of the bacon, and they have a raft of food aversions.
Rhubarb? Sorry. Wrong sort of acids. Oops, no, I don’t do fungus. Is the coffee fair trade? Are the mushrooms organic? I’m a celiac, didn’t I mention? Do you have any gluten-free bread?
And then, as plate goes down on table,
Ahhh, sorry, but I can’t actually eat tomatoes, or anything that’s been in proximity to a tomato
.

It’s warm some days, but the wind blows. The wind blows most days. It’s so much our default weather that the days when it stops are puzzling. The silence takes its time to penetrate the senses. Being here in quietness is a different experience. The landscape is different. The air hangs heavy over it and its shapes settle into quadrilaterals—broad stripes of sky and sea, thinner strips of garden and wall, layered, irregular blocks of headland—all of this replacing its customary dynamic wildness, the sea in ferment, clouds scudding, the sharp diagonals of trees blowing. An elderly neighbor I meet one chilly morning down on the road while dog walking (in the Barbour, in midsummer, with head-wrapped scarf in place and Wellies) tells me that she has decided she can’t face another peninsula winter and is moving down to Somerset. “Make sure you get off frequently, regularly; quarterly if you can manage it,” she told me. “You have to get off sometimes.”

Off?

“Away south. Four times a year. It’s important. Otherwise you get unhappy. Cabin fever.”

I’ve lost all sense of where my feelings about caring for Nancy and Morris end and where those about living out here begin. The longer we’re here, the more the two things, the social isolation entailed in caregiving and the physical remoteness of the house, seem bound up in one another. Wordsworth’s exalted observation, “How exquisitely the individual Mind / … to the external World / Is fitted:—and how exquisitely, too— / … The external World is fitted to the Mind,” seems unintentionally close to taunting.

I go out into the landscape and see it all externalized: Nancy’s panic and my own resentment. The view is soaked in both varieties of unhappiness. I am beginning to think that I will love the peninsula only after I’ve left it. Flaubert had a similar relationship with Egypt, which bored and depressed him when he was there, at twenty-seven, but grew in his mind in all the years afterward, some forty years of ripening. The Egypt of memory, his idea of Egypt, followed him to the end. He was thinking of it, longing for it, just before his death. That’s probably what will happen here and it’s all down to elementals. The sea and sky, beach and cliff, meadow and wall and wood. These will prove irresistible, once memory has charge of them.

*  *  *

S
CHOOL BREAKS UP
and the summer holiday stretches lengthily ahead. On days when it’s grotty weather, bucketing rain, autumnally cold, we struggle to find things to do indoors that Nancy will tolerate. I invite her to come and do some art with me and the children at the kitchen table one afternoon.

“I can’t really do it. I’m terrible at drawing,” she tells me.

“Doesn’t matter. But would you like to have a go? Play with some color on the paper?”

“I’d love it. Just show me how.”

We sit down with a still life between us, a jug with flowers, a cup, a glass. Quietness descends with concentration. Nancy sits with an oil pastel in her fingers, looking uncertain.

“What do I do?”

“Just draw what you see. Or part of it. Or whatever you’d like to draw. Anything at all,” I say. “Or just make colors on the page.” She looks more uncertain. I’ve given her too many instructions. “Just use the crayon,” I tell her.

The rest of us have settled into a slow breathing rhythm, glancing from objects to paper and sketching in the shapes. Nancy looks at the jug of flowers, the glass, the cup, and at her paper, which is a large white sheet. The oil pastel makes contact at the left-hand side and she begins. What emerges is very like her signature, what her signature’s become, repeated with variations: a long unbroken series of what look like
n
’s and
v
’s interrupted by the softer contours of what might be
m
’s and the occasional punctuating
y
. It goes across the paper and up, forming a ribbon of letters about half an inch broad. All the time that she’s writing, she’s looking, as the rest of us do, toward the still life grouping and back at the paper, as if what she’s doing reflects what she sees. She talks to herself as she draws, murmuring along. “There, that’s up and away and here’s the next part, and there it goes, and it’s like that, and it’s like that again, that’s right.” The children maintain a tactful silence. “There,” Nancy says, putting her oil pastel down. “That’s it, I think.”

The American abstract artist Willem de Kooning (1904
–
1997) died of Alzheimer’s. His late work, his dementia art, is very different from the hectic, intricate colors and anxiety of the art of his prime. It’s much simplified, has curving open lines (lines dominate), allows generously for white space, and fills in the shapes created by intersections with color. It’s as if Jackson Pollock turned into Mondrian. In a series of huge canvases the white field is interrupted by curling tendrils, “ribbon paintings” that tangle their ribbons together, and more than one critic has said, rather tactlessly, that they resemble the tangling of tau protein in the Alzheimer’s brain. There had been symptoms as early as 1980, when the output is visibly taking on its dementia-period look. In that same year a friend reported that de Kooning, formerly a voracious eater-up of books, had given up reading entirely. Instead he painted and drew all day long obsessively. He gave up preparatory drawing in 1983 and used old drawings as the basis for compositions. He was extraordinarily productive: 340 paintings were produced in the 1980s alone.

There’s been much debate about whether de Kooning’s 1980s work is properly art or not. Some critics have raised issues of intention. Is the demented de Kooning still essentially himself, still giving of the same self that made his pre-eighties work so valuable? (Be in no confusion. This is a question about value. About money. His canvases sell for many millions of dollars.) There needs demonstrably to be an artist in control of his material, especially in the modern art market. In terms of value (monetary), the artist’s brand is more important than the material. The self that is implied by the work, that is sold in the selling of the work, has outstripped the power of the work itself. In the age of Damien Hirst and Tracey Emin it’s the artist that’s the artifact. The artwork is secondary.

De Kooning wasn’t diagnosed until 1989. In that same year, another friend reported that though he remained physically robust, affable, appeared to recognize people, and was still painting, when asked questions he’d give answers that were utterly unintelligible. Images remained with him but word and meaning were lost. He gave up painting in 1990. What would the art world have thought about that final decade if de Kooning had died undiagnosed? Mightn’t there have been a rather different tone to the discussion, talk of an old man’s retrospection, his sense of peace and optimism? Funny you should mention that, for lo and behold, reevaluation can take us there. The late works are beginning to be exhibited and written about as complex marvels, and in this spirit of reassessment de Kooning’s dementia is given quotation marks and spoken of as irrelevant. There is plenty of evidence that he was a happier man in these brief years, having recovered from the alcoholism that precipitated a breakdown in 1980 and seemed to bring Alzheimer’s on.

Nancy begins to pick on the dogs. Perhaps it’s a pecking order thing, and this is her only remaining outlet for the exercise of authority. Asked if she’d like the dogs in her sitting room, Nancy will always claim that she does, warmly and with apparent sincerity. The dogs have spent a lot of time in the in-laws’ room this year. Nancy asks them in, blocks off their exits and bosses them about. The terrier prefers to be by the fire but Paddy goes and sits by Nancy’s feet, enjoying having his ears fiddled with, tolerant about the ranting. They get biscuits, they get sandwiches, are bemusedly offered orange peel, and they get told what Nancy calls
stories
. That was the case until recently at least. Now, though, they’re unwelcome. Doors open and dogs are evicted.