I have said nothing. I leave nothing. I have not said what
I wanted to say. I have so much more to say.
—MAURICE RAVEL
WINTER ARRIVES WITH A VENGEANCE AND THE PENINSULA feels intensely vulnerable, low-lying in an angry sea. It’s as if, were we to go up another notch in the storm conditions, it might all be swept away, scouring the place of buildings, washing the cattle barns and cottages into the ocean. I imagine us all, humankind and livestock together, found floating in the bay, distended, by a passing ship. It’s a sailing ship and it seems to be the early eighteenth century. What disaster hath happened here? I’m having peculiar daydreams. I sit at the drawing room window watching the hedges and shrubs blown flat and gray in mouse-colored rain, the sky low and woolly, looking at the distant dark peak of the mountain across the bay. A cloud sits over this hilltop, raining on it.
Morris is still in hospital. Progress, officially, is “slow.” The idea of mobility has been abandoned, though nobody’s explicit. Instead, the W word begins to be mentioned: wheelchair. Nancy sits in her chair for long periods, rubbing her hands. It’s too cold in the hallway for wandering, even with all the bottle-gas heating chugging away, the old electric storage heaters pumping out on max, every coal fire in action. No one hangs about between internal destinations. Washing and dressing are done at a gallop. Nancy is feeling the cold acutely, despite the customary five cardigans. She has taken to wearing a hat indoors, a dark blue felt number with a jaunty feather. Her hands are cold and so I retrieve a cashmere blanket from her cupboard, one in fine-woven gray that we gave her for Christmas once, tucking it around her lap and legs. Thus immobilized, Nancy’s a picture of a woman lost in a dream. Her hand rubbing has become systematic, ritualized. First, palms are placed together at right angles making a cross shape, rubbed as if rolling dough into a sausage. Then the back of each hand is rubbed briskly by the other palm in turn. After this, she interlocks her fingers, jamming them tight together and releasing, jamming and releasing, before the sequence begins again. Later, I read an identical account online of somebody’s mother’s behavior, and begin to see Nancy as pulled helplessly along bizarre, well-trodden tracks of disease, along Dr. Reisberg’s railway.
At intervals in the hand rituals, she twiddles her hair. Her gaze is averted from the television pictures flashing in front of her, off toward the window, toward the fire, or dipped carpet-ward, as she captures and twirls sections in turn. Her hair begins to develop twiddled kinks. These, the hand rubbing and hair twiddling, must be signs of distress. But what’s to be done about them?
We realize that Morris is a skilled Alzheimer’s companion, in his way. His way consists of the sharing of all-day television. He watches everything, anything, is a habitual channel flicker, and keeps up a steady dialogue with the programming that is really a way of talking to his wife. The sharing is crucial.
“Just look at that suit! What does she look like?”
“Three hundred fifty pounds? I wouldn’t give him ten bob for that vase, would you?”
“Look at the colors in the trees! I’d no idea Bulgaria was hilly, did you, dear?”
He uses television as an intermediary. He talks, and then from time to time, when it’s clear a response is required, Nancy joins in. “Oh yes, you’re quite right.…” She might almost pull it off, the illusion that she understands the question, but then likely as not will blow it: “And I have always thought so, but not many people, not many other people I should say, can see it that way, you know, and it’s been like that my whole life.”
Morris, in Alzheimer’s denial, can’t let such wittering pass uncontested.
“What are you talking about, you silly woman? It’s bloody Bulgaria!”
But Morris is still in hospital, and Nancy finds me lacking as a television companion. I’m not given to being surprised by television, or to arguing with it, or to commenting on people’s appearance. I don’t really watch it. I sit with her in front of it but my mind is elsewhere. Her mind is elsewhere, too. Or nowhere. It’s hard to know what or where her mind is now or whether she has, in any meaningful sense, a mind at all. Her brain functions well in instructing her body as to movement, forward propulsion, the signals required to bend and pick up a crumb from the carpet and eat it. If you ask a question, she’ll answer it, in a fashion: Are you hungry? I could eat something nice. Do you like this color? I think it’s very nice. Do you want to go to bed? Bed might be nice. But I’m not sure this is evidence of a mind. Are these her answers, the answers she gives me, or are they any old answers found in a box, retrieved from those that have survived the fire? Alzheimer’s robs the brain of time travel, of its customary and constant roaming forward and back, the past stretching behind and the future ahead. That’s how people operate. We put everything into context. But Nancy’s marooned in the present. I’m only just beginning to see how fundamental this is. As Milton writes in Paradise Lost, “that must end us; that must be our cure— / To be no more. Sad cure! For who would lose / Though full of pain, this intellectual being / Those thoughts that wander through eternity.” That’s what I want from my experience of outdoors, from my walks along the cliffs: thoughts that wander through eternity, escaping the tyrannies of the lists, and the intimate tedium of the caregiver’s day.
I’m not entertaining enough a television companion, though I try. If Nancy’s especially restless or upset, I’ll try to talk her through what’s happening on-screen. But it isn’t the same as having Morris here. He’s belligerent, and that amuses her. He’s a fund of trivia about various actors and their lives, who they married and divorced, their war service, other things they’ve been in. He makes cynical remarks about the soap plotlines, predicts what’s going to happen, whoops with pleasure when he’s right. Nancy loves all this and whoops along. Not much whooping is going on now. None. My heart isn’t in it. I remember, guiltily, that I had much the same trouble once with children’s television, and it occurs to me, not for the first time, that it might be me that has the problem.
“Do you like that dress, Nancy?” I’ll ask, rather desperately, as Nancy gets up to leave (leave home). “What do you think of that pink sari?”
“It’s very nice,” she says, but she isn’t engaged. It may be that my voice isn’t the right trigger. There’s nothing left that’s equipped to recognize me anymore. I’m a stranger, a pleasant enough stranger staying at the same hotel. Those are today’s assigned roles, it seems, to judge from the things Nancy tells me. She complains about the service, the temperature of the tea, the quality of the lunch. “They’re really not very good here at all,” she confides, leaning in toward my ear. “It’s gone downhill, this establishment, since the old days.” I sit with her after lunch and find “a nice film,” but eleven minutes later she’s up and out of the room. Eleven minutes has become her attention span for television pictures.
“I’m just going for a wee walk.”
Shortly after, I find her in Chris’s office, interrupting a business call.
“Perhaps this gentleman can help me,” she says, gesturing toward her son, her voice full of emotion. “Can you tell me where I am?” Tears course down her cheeks.
A NEW CAMPAIGN of making Nancy happy commences. We do housework together after breakfast—five times more housework than I would normally do—Nancy poignantly grateful at being allowed to share in the tasks. We clean windows, Nancy rubbing away at one pane of glass with a piece of kitchen towel and singing. “When all my eyes are finished, and the world is bright and free, then I will be there and I know I can come, and that’s the one for me.” She can still rhyme. Though she’s unhappy about having to do a different pane.
“There’s nothing wrong with this one and it said it liked it.”
“Yes, but look, the other ones are dirty.”
“Nonsense.”
“Its friends, you see them, look, here and here. Its friends are dirty and they will be embarrassed.”
“Oh dear. Oh deary, deary me, that will never do.” She changes panes. I’m aware that a lot of what I do with Nancy plays on the subject of shame. For this generation it’s powerfully embedded in, the worry about what people will think, and I exploit it thoroughly.
We vacuum rooms, Nancy going over the same piece of carpet back and forth. I leave her vacuuming and go to put some washing in the machine, and as I bend to slam the porthole door, I hear shrieking of a familiar kind. I go back to her sitting room at a run and find Nancy standing with her hands in her mouth and the Dyson lying on its back roaring. “It doesn’t work! It’s falling down!”
I get her into a rhythm again, but when I leave the room she begins to howl. My head comes round the door. “What is it now?”
“Could you do it? Could you take it? I can’t do it.” She withdraws to the safety of the wall but can’t take her eyes off the thing. It’s as if she’s forgotten how vacuum cleaners behave. This one might do something spontaneous and dangerous.
I vacuum the room and Nancy watches. “You’re so clever,” she says. “You make it look like nothing at all.” She begins to sing her “Irish Eyes” variant.
I’VE BEEN READING about music and dementia. The composer Maurice Ravel (1875–1937) had (probable) early-onset disease from about the age of fifty-two and died ten years later following unsuccessful exploratory neurosurgery. His most famous work, Boléro, whose sweeping repetitions are now firmly associated with ice-skating, has been cited as an example of dementia composing. He wrote Boléro in the year after becoming ill. The question that’s unanswerable is: Would a healthy Ravel have written the same score, or is it one of the best-known examples of perseveration in art? His own judgment seems clear; he referred to Boléro as “orchestral fabric without music.” Ravel’s dementia first presented itself as confusion about his touring schedule. He lost luggage, lost his tickets, and traveled with hoarded letters in his pockets. He forgot how to swim—the procedural memory having failed him—and almost drowned. In 1933, four years before his death, he told friends that he wouldn’t after all be able to write his planned opera Jeanne d’Arc, saying he could hear the music in his head but couldn’t access it. “It’s over,” he said.
We deal with laundry, Nancy and I. Laundry is a big part of the day. But now, it’s too cold to hang it outside and make laundry into a journey. The truth is, there aren’t many days when washing dries outside hereabouts: The growing season is short and the drying season shorter. It’s too windy much of the time, the clothes disappearing over the wall, or cast into bushes, muddy and torn. Laundry goes out warm and wet and comes back in cold and wet so there’s little point. Today it would return stiff and white with frost. Nancy stands at one end of the old-fashioned pulley in the utility room and I stand at the other. I pass her clothes from the basket and she pauses to pass comment on them.
“Those are underpants. They are not my underpants. They are horrible, actually.”
“They are your underpants.”
“Are they? Are they? Who said that was a very bad person because it’s entirely the other way.”
“Hang them over the pole. Like this, look.”
She has the elastic waist of a pair of pink underpants clutched tight in her fingers. She moves her whole hand forward but it doesn’t connect with the pole. Watching her, it occurs to me that the trouble she’s having is like using a mirror to try and fasten an earring or snip at a stray bit of hair. Fingers and scissors don’t move in quite the expected way. The mind plays spatial tricks of distance and direction.
“It doesn’t want to go,” she says. She jerks her hand forward further and overshoots. The underpants disappear over the other side and flutter to the ground. “There,” she says. “Give me another one.”
I give her a pair of socks. I put my hands over hers and guide them to the pole. She puts one on top of the other and fusses with them, trying to get them straight. I get on with the rest of the hanging up. “It’s quite something watching you do that,” she says admiringly. “You know just how it works. I think I used to know but I don’t know now, that’s for sure.”
I stop and look at her, a child’s school sweatshirt in my hand. “Do you remember being young and having washing to do?” I ask.
“It’s all somewhere else. My father was there.”
“You’re always talking about your father but you never mention your mother,” I say.
“Well, she was there, I expect. But I didn’t know her, really.”
“Why’s that? Didn’t you get along well?”
Nancy’s eyes are watering. It’s hard to know if this is weeping or whether the smell of detergent has triggered her allergic rhinitis. The rhinitis distracts her.
“I used to go along the street, you know, and I’d be crying. I have these terrible watery eyes and people would stop me and say, ‘What on earth’s the matter?’ and I’d say it’s just my watery eyes but you could see they didn’t believe it.”
“That’s a shame, poor you.”
“They’d stop me in the street and say, ‘What’s the matter with you?’ and I’d tell them straight, I have this condition but you could see they didn’t believe a word of it.”
“Didn’t they? That must have been annoying.”
“I’d be walking along the road, and people would see me crying and it was amazing really—”
“Shall we stop now and have some coffee?” I interject.
What would we do without coffee breaks? They stitch the caregiver’s day together.
We sit at the table and eat cake. Nancy is buzzing with energy but I am exhausted. The only real benefit is to the state of the house. I am that most conflicted of creatures, a house-proud sloth, so all this effort pays off in terms of the secret pleasure I take in order. Like nature, I can’t abide a vacuum (cleaner), but on the other hand I can’t settle to writing if the carpets are filthy, a curse that may be peculiar to womankind. So this is how I live now. I make an effort to be Mrs. Tiggy-Winkle in the mornings, and to include the elderly, confused hedgehog of my acquaintance in housewifely activities. Then, after lunch, counting on the aftereffects of physical effort and the sedating power of a cheese toastie, I chum my mother-in-law in her TV room. Nancy mutters and twiddles and hand-rubs away, and then dozes in front of the television and I—though sitting with her, in Morris’s electric armchair—disappear into my preferred world of words.
THERE IS CHANGE afoot and changes come as steps and not as slopes. There are sudden downward movements and this is the latest one. It seems quite suddenly true that Nancy doesn’t know her grandchildren. This seems to be another instance of parietal lobe damage. Alzheimer’s patients rarely have trouble with vision as such: The occipital lobe isn’t usually affected, but family-member recognition is a subtler, deeper-buried form of word-object connection. The truth is that she hasn’t known the children for quite a while. If you asked her about them, in the abstract, while cleaning windows, she’d deny having any or say they were all grown up and worked at Kmart, or some such random answer. She hasn’t known their names for two or three years. But now she doesn’t respond to them visually, either. The visual prompt of a little boy face appearing and grinning at her might elicit a happy response, but only because it’s a little boy and (usually) she loves small children.
“Hello,” she’ll greet him with exaggerated surprise. “Look, a wee boy. Come in, come in, I won’t bite. Let me look at you. You’re a fine fellow. What’s your name?”
Jack falls for this sometimes, despite knowing that Granny will turn on him in the end. “You’re a little bastard, aren’t you? Get out of here.”
The granddaughters, being self-possessed young women, are ignored or dealt with in tones of wilting sarcasm. She mutters into her hand when they talk to her, as if her palm is an improvised gossiping friend.
Children following her into her bedroom—“You all right, Gran? You looking for something?”—are rounded on.
“Why do you keep following me everywhere? Why can’t you just leave me alone?”
Then she’ll come and find me, complaining bitterly. “I have to say I’m absolutely pig sick of all these young people that seem to live here.”
ONE AFTERNOON THERE’S an unseemly and pointless row, utterly counterproductive. It starts when Jack is called a series of unfortunate names: Alzheimer’s dished up with a side order of Tourette’s. Jack’s so upset that Chris is drawn into the row. Nancy’s told the blunt facts: that we can only put up with so much. The H word is mentioned: the home. The one she’ll be shipped off to if she doesn’t mind her mouth. Net result: two days of hand-wringing.
“I didn’t do it! I didn’t do anything bad!” Over and over and over. It’s difficult to distract her from these ongoing, all-day denials.
“Would you like a cup of tea?”
“But I didn’t do it! I didn’t! I didn’t do anything bad!”
“No. Listen. Tea. Do you want some? A biscuit?”
“But I didn’t do anything! It’s all a load of rubbish!”
And then, on the third day, calmer but no less angrily: “I’m afraid I have to tell you that unfortunately your children are liars. They’re all bitches.”
All of which begs the question: How did she remember the incident so long? Or did she? Perhaps it was another example of a contentless verbal loop—something that bypasses memory—and rage is just very sustaining. Emotional events have their own kind of longevity. I look up swearing and Alzheimer’s, and it seems that it’s to do with damage deep in the limbic system, in the amygdala. Amygdala damage has been linked to bad language, undressing in public, lechery, unprovoked hostility. Amygdala atrophy has been seen in Alzheimer’s autopsy.
Morris comes home for a day visit, with an occupational therapist and various mobility aids. Nancy stays out of the way.
“Come on, Nancy,” I chivy, putting my arm round her shoulders. “Morris is here. He’s home for the day.”
“Oh. Is he. Is he. Right,” she says, pretending to watch the television.
“Morris! Your husband! He’s here. Come on. Let’s go and say hello.”
“Oh, all right, then. If you say so.”
We make our way with exaggerated slowness through the kitchen.
“You do know who Morris is,” I venture.
“No.”
“Your husband.”
“Oh.”
“Come on, then.” I open the bedroom door and there’s Morris, looking absolutely spent.
“Hello, dear,” Morris says.
Nancy is blushing. “Hello,” she says timidly.
“Amn’t I going to get a kiss?”
She goes over and kisses him and then returns to my side.
“I’m just home for the day,” Morris tells her. “But I should be back soon.”
“Oh,” Nancy says.
HARRIET DECLARES HERSELF available for granny-sitting, and we’re invited to eat with neighbors who have a tree-growing business. Jane has a mother with Alzheimer’s in a nursing home in England. Whenever Jane and I begin to talk, we fall down the same conversational black hole. I hate it that I seem able to talk only about Nancy these days. I have become very boring—not least to myself—a judgment confirmed by another supper party, where I fall into the black hole again, monologuing on the Nancy subject, even though nobody else present has caregiving problems. I must do something. I must do something about this. I must restrain myself from downloading. I see the tedium cross people’s faces, the light go out of their eyes. I am beginning to repel people. Dementia caregiving is isolating in more subtle ways than I’d imagined. Though the community here is a friendly one, real friendships are slow to take shape. I don’t go out of the walled kingdom of the house often on my own, and when I do I’m very dull company, and people don’t visit much. Who can blame them? Nancy’s likely to want to join in, seating herself close by and chuntering. And when she doesn’t, she and Morris are all I seem able to discuss.