Keeper: One House, Three Generations, and a Journey Into Alzheimer's (13 page)

T
HERE 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.”

O
NE 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.

H
ARRIET 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.

Chapter 14

It is useless to attempt to reason a man out of a thing he was never reasoned into
.

—J
ONATHAN
S
WIFT

M
Y BIRTHDAY FALLS IN
F
EBRUARY AND IS A BLIZZARDY
day, with snow brought by a north wind that puts the heating out and makes the chimneys unusable, so I spend most of the occasion wrapped in a duvet in the drawing room, alone and reading, Chris having taken on the Nancy-minding in my honor. In the evening, determined not to stay at home with pizza and a movie, we go into town with Nancy and end up at the American diner, eating pizza, and going to see a movie. The pizza is disgusting. Then the movie’s delayed. After a half-hour wait in the cinema, house lights up, joking that they can’t find the right movie reels, the manager comes in to explain that the bulb has blown in the projector and they can’t find a spare.

I am not feeling well. This not-feeling-well feeling is persistent and low-key. I am not going to the doctor. I don’t want to have a conversation about stress and embarrass myself.
Stress
would be the word used at the consultation. It’s an easy word, protectively imprecise, a useful box to tip your feelings into. But a better word would be
incompatibility
. It’s the shock of daily, ongoing proximity to this “vegetable universe” of my in-laws: their lives pared back to the bone, to the medical, physiological, placed squarely in the raw, reduced to material struggle, an easy decline the most that can be hoped for. It’s William Blake, the source of the phrase: “Imagination is the real and eternal world of which this vegetable universe is but a faint shadow.” There are plenty of people who’d phrase it directly in reverse, insisting that the vegetable universe is what’s real and the world of the mind the shadow, Morris and Nancy among them. There can be no communication. There never has been on any real level, but since moving here we’ve both of us, both camps, been pushed further to the extreme of our position and the gulf has been rendered unbridgeable. This, I have self-diagnosed as the root of the trouble.

I am having funny turns, two or three a week, in which I get attacks of something like vertigo. The room spins, my head swirls, and I am intensely nauseous. Sometimes it happens in the car and that’s the worst. I have to hold on to my head because it feels too heavy to hold up. The scenery rushes past the window at odd angles and small hills feel like a fairground ride. It goes beyond nausea; it’s more like my whole body seeking to turn itself inside out.

When I can I confine myself to bed, propped up with pillows, and read, and surf the Internet for celebrity dementia sufferers, a strange new hobby. Jonathan Swift (1667–1745), author of
Gulliver’s Travels
, spent his healthy adult years fearing dementia in just the same preoccupied way that Philip Larkin brooded on death. In 1717, on a country walk, he remarked of a tree whose upper canopy was shriveled, “I shall be like that tree, I shall die at the top.” His forebodings were spot-on, though ironically what he believed to be early signs of brain disease was probably Ménière’s, a vertigo-causing disorder of the inner ear, a condition it’s possible I’m also suffering from. Swift started losing his memory in 1735 and was declared incompetent to handle his own affairs in 1742. His obsession with senility, while still in his prime, led him to invent the Struldbruggs, immortals born randomly among a mortal race, in book 3 of the
Travels
(written in 1724). The Struldbruggs, far from satisfying Gulliver’s excited anticipation of wisdom, have forgotten the common names for things, can no longer read, and are emotionally incontinent, nasty and feared. They are in rapid decline at about the age of eighty and are then demented for eternity, unable to die, “peevish, covetous, morose … uncapable of friendship, and dead to all natural affection.” Swift’s probable Alzheimer’s was misunderstood as ill temper and as lunacy by contemporaries and by critics. Samuel Johnson, writing in 1779, blamed Swift’s dementia on his refusal to wear glasses. “His ideas, therefore being neither renovated by discourse nor increased by reading, wore gradually away, and left his mind vacant to the vexations of the hour, till at last his anger was heightened into madness.”

Morris is still in hospital.

Nancy doesn’t mention him anymore. I ask her about her family sometimes (her family are elsewhere; her family, she suspects, are all dead), reminding her that she has a brother who lives in Australia.

“He’s in Australia? Has he been there long?”

I mention Morris’s name. Does she know who that is? I show her a photograph.

“He’s my brother.”

“No, he’s your husband.”

“Oh. Is he. Oh.” Indifferently.

“He’s in hospital.”

“Is he? Oh dear, oh dear. Oh dear me. Well. I’d better just go a wee walk.”

Some days, though, the story is different.

“I don’t like to pry,” one of the day center volunteers says to me, “but she’s been saying that she hasn’t been allowed to see her husband.…”

That’ll be the husband that she sits with in the afternoons, then. She sits at his bedside and holds his hand and becomes tearful, as does he. We leave them to it and go off to do errands and when we get back find Morris looking perplexed.

“She’s been talking absolute gibberish.”

“Morris. You do understand what Alzheimer’s disease is, don’t you?”

“Of course, but even so, absolute gibberish.”

Nancy begins going to the day center in the town. A minibus comes and picks her up at the conservatory door on Tuesday mornings. This means that all her weekdays now have something going on in them other than Friday. Friday becomes a black day. We dread Fridays.

Her old love of housework has quite abruptly evaporated.

“I wasn’t brought here to do this!” she cries, throwing the duster down.

“Would you like to vacuum your sitting room for me? Look at all the dog hair.”

“I don’t think that’s my job.”

“Help me hang the washing, then. You like that. We’ll get the pulley down.”

“I’m not at all interested.” Eyelids nervously fluttering. “And you should know that I’m going home in a minute.”

I put the television on for her, provide magazines to look at, cake and tea, her favorite soft toys, and put her beloved blue handbag onto her lap, the one with the assortment of things in it that she likes to take out and put in again. But none of this interests her on Fridays.

She turns the television off—or rather gets me to—and sits looking forlorn. This is niggling. It isn’t possible to work. I crouch at her knee looking up into her face, taking her cold hands in mine, trying to coax her into wanting something out of the day.

“Just leave her to it,” Chris says. His patience is worn very thin.

“I can’t just leave her sitting there.”

“That’s what she wants. If she wants to brood, then let her.”

“But …”

“You’ve spent most of the last five months with her. It’s all right. Look. Just go. Go and do something somewhere else. I’ll sit with her for a bit.”

Chris installs himself with his work project in Morris’s chair, and makes business calls there from his mobile. His mother sits a few feet away staring straight ahead and not saying anything. But the expression on her face is pretty noisy and her hands are in continual motion.

I sit in the drawing room at the window, wrapped in my blanket, watching foul weather hurtle itself toward us from the Atlantic, great low barrels of cloud rolling in, gray rain turning sleety. The wind is oddly comforting, a soothing white noise, baffing at the windows like a heartbeat.
There there. There. There. There there now
. But despite this I find it difficult to work. My concentration skims the surface of the job at hand. I need to write about the people in the novel that I’m supposed to be writing as if they were real. I need to build walls around them, conjure up the house that they live in, which is as important a character in the book as anyone; feel their breath, read their minds, give their situation depth. The vividness of the impression needs to come off the page at you. I know all this. But it isn’t happening. The problem is that I’m not really present in the story. I read and reread paragraphs of the draft hoping and failing to catch the tide. But I’m half listening for trouble, and for the door to open, which it does, Nancy shuffling in and saying, “Ah, there you are, I thought I’d lost you,” and Chris coming in after her, “No, Mother, she’s working just now; come on, come back with me.”

I go back through to make coffee a half hour later and find Chris watching a western and Nancy fast asleep.

Next, Nancy turns against her galantamine. She secretes her pills up her sleeve and is cunning about it. She takes them apparently happily, and pretends to glug them down with water, but when I check later, they’re tucked up her cardigan arm, saliva-softened and encased in tissue paper.

“They’re not mine!”

“Yes, they are. It’s important you take them.”

“What’s it got to do with you?”

“I’m the one that looks after you.”

“Oh, are you. Are you indeed.”

“Here’s one, look, take it from my hand.”

She clamps her jaw shut and looks like she can’t hear me, and only intense negotiation gets the pills properly swallowed.

S
HE BEGINS TO
suffer quite dramatically from
sundowning
. There’s a noticeable deterioration of mood, shortening of temper, worsening of speech, a sharp downturn in reasoning capacity, at around four to five o’clock in the afternoons. There are sundowning incidents. She begins hitting. Caitlin’s slapped hard, and Nancy is completely and utterly unrepentant. This is worrying. I look it up and it seems to be connected with frontal lobe damage, again. The “prefrontal” lobe (the very front, behind the forehead) appears to be the site of our moral selves, and is crucial in triggering appropriate emotional responses. It bestows on us the very human qualities of guilt, embarrassment, and self-reproach, things Nancy no longer feels. Everything I read at this time seems to have some link into dementia. Even, unexpectedly,
Middlemarch
, in which George Eliot writes: “With memory set smarting like a reopened wound, a man’s past is not simply a dead history, an outworn preparation of the present … it is a still quivering part of himself, bringing shudders and bitter flavors and the tinglings of a merited shame.” Nancy’s tingling days seem to be over.

She gets a wild look in her eye when anyone asks anything of her.

“I’m going to report you to the manager,” she says to me one day as I’m handing her a glass of her favorite lemon squash.

“What?”

“I think it’s only fair to forewarn you.”

“Nancy. Who do you think I am?”

“I know very well who you are.”

“Who? Who am I?”

“What insolence,” she says.

Chris comes into the room. “Trouble?”

“You have no idea who I am. To whom I am,” Nancy says in a more formal voice than is usual.

“Oh? Who are you, then?” Chris asks her.

“I. Am. The. King of Scotland,” she says.

“You’re what?”

“Yes. Nobody knows yet. The king of Scotland and this is all mine.”

One evening, when Chris is in London, Nancy is mislaid for a while. Eventually I find her in the tractor shed in the yard. She’s closed the door behind her and is standing expressionless by the ride-on mower.

“Nancy. Thank god. What are you doing in here?” It’s dark in there and oily smelling.

“I’m looking for my father.”

“Come inside, it’s cold, you’ll catch your death out here.”

“No! I won’t! I’m going home!”

She looks meaningfully at the mower.

“Nancy, you’re in the yard in February wearing a cotton nightdress and a bath towel. You need to come inside.”

I take her by the arm and she snaps it away violently. I take it again more firmly. She resists and a tussle develops, Nancy shouting at the top of her voice.

“Go away! Leave [shrug] me [yank] alone [push].”

I manhandle her back into the boot room. She’s icy to the touch and bluish. She stands in front of the open glass door into the house, barring the way, hands spanning the width, holding on tight to the door frame, bracing herself and white-knuckled.

“You’re not going in,” she says in a low voice.

“What do you mean? Those are my children in there.”

“No. I was born here. And you are not welcome.”

“Nancy. Let me in.”

“You are not welcome.” It’s said with genuine menace and I feel a shiver of fear. I’m reminded of something Nancy’s friend Carol said, the last time she phoned. Carol’s late mother had Alzheimer’s and thought Carol an intruder. She’d stalk the house with a carving knife, intending to do poor Carol harm. What if Nancy had a knife right now? By the look of her, she’d not be shy in brandishing it.

I try to pry her fingers but she’s supernaturally strong. She lets go all of a sudden, lurches forward, and pushes me backward. I fall on some shoes in an undignified heap. It must be hilarious from her viewpoint: my surprised face as I land legs akimbo in a muddy pile of Wellies. I’d be laughing if it were me. But Nancy has a very serious look on her face, and glinting malice in her eye. She returns to the barricade.

“Nancy. Listen. You are my mother-in-law. I am married to your son.”

She snorts. “That’s ridiculous.”

“Nancy. Just let me into the house, please.”

“No.”

“I need to go in now. It’s cold. And I need to get your supper ready.”

She relaxes her grip. “I’m hungry right enough.”

“Let me make you something tasty to eat. And we’ll have a pot of milky coffee, shall we?”

Now she’s all smiles, clutching her hands under her chin like a Victorian heroine.

“Oh, that would be lovely! You’re very kind to me.”

She’s already had some pasta with us, but I make her scrambled eggs on toast and she wolfs it down.

Then it starts again.

“My house. They say it’s not but it is and they’ll be sorry. They’ll find out forever. They say what they like but they don’t know anything.” She sees a pound coin sitting on the carpet and picks it up. For the next half hour she turns it over in her hands, examining it closely.