Read Keeper: One House, Three Generations, and a Journey Into Alzheimer's Online

Authors: Andrea Gillies

Tags: #General, #Women, #Medical, #Autobiography, #Biography & Autobiography, #Personal Memoirs, #Biography, #Diseases, #Health & Fitness, #Alzheimer's Disease, #Patients, #Scotland, #Specific Groups - Special Needs, #Caregivers, #Caregiving, #Alzheimer's disease - Patients - Scotland, #Alzheimer's & Dementia, #Gillies, #Alzheimer's disease - Patients - Care - Scotland, #Caregivers - Scotland, #Family Psychology, #Diseases - Alzheimer's & Dementia, #Andrea, #Gillies; Andrea, #Care

Keeper: One House, Three Generations, and a Journey Into Alzheimer's (8 page)

Chapter 7

Our business in this world is not to succeed, but to continue to fail in good spirits
.

—R
OBERT
L
OUIS
S
TEVENSON

I
T’S AUTUMN ON THE PENINSULA, AND
M
ORRIS IS RUSHED
into hospital. He gets up out of his chair to go to bed, puts his foot forward awkwardly, and goes down hard, breaking his leg at the top by the hip. Nancy doesn’t know this, although she was with him when he fell, and held his hand until the ambulance came, and has visited him every afternoon. We keep it from her—or so she accuses, when it occurs to her to ask where he has gone, two or three dozen times a day. She doesn’t take the news very well. Her face puckers up pinkly.

“Why didn’t anyone tell me he was in hospital? That’s just ridiculous.” She sweeps out of the room in a huff, or tries to, her shuffling waddle a little faster than usual, her hands outstretched to grasp the door handle, like a great outsize wrinkled toddler.

There are days when the toddler similarity is persuasive and bizarre. Days when I feel like a babysitter, a new and inexperienced one, given care of a reluctant and stroppy child, having to make it up as I go along, trying more and more desperately to mollify and distract, and feeling that dark needle of fear when nothing I do makes any difference. She shakes her head and stamps her foot and has tantrums. She asks for her father and gets agitated when he can’t be produced, looks horrified when I confess that he and her mother are dead. Then, shocked by my own bluntness, I add, “But that’s because you are an old lady now.” She looks baffled. “You see, you’re almost eighty. You don’t have parents any longer, but you have children, and grandchildren. Six grandchildren. Three of them are in Canada, and three of them live here with you.”

Nancy’s face acquires a stony set look. “My. Parents. Are. Coming for me.”

When the forest fire of Alzheimer’s causes havoc in the frontal lobe, it attacks the site that most approximates our adult selves. Frontal lobe damage can return dementia sufferers to childlikeness, and also childishness. Childishness is the worst because it’s coated in a veneer of adult power, assumed authority, and physical strength. Sufferers can become unpredictably emotional, and this is likely to worsen until—probably late in stage 6—it burns itself out, the sufferer too ill to feel anything much. This is a fact I take comfort in, and the idea, leading on from this, that consciousness itself is eroded, so that by stage 7 there’s too little left of the self to experience anything much of what’s happening. In dementia, emotions can become dislocated from feelings. Emotions are bodily reactions, and feelings intellectual ones. The emotions are produced but the feelings—emotional impulses translated by the thinking mind—are lost or locked off. Nancy is emotional, now that Morris is in hospital, but she doesn’t understand it. She cries and is grumpy and cries again and apologizes to us all. “I don’t know what’s the matter with me,” she tells us, and that’s literally true. It takes a facility for remembering in order to know what it is you are feeling and why.

Poor Morris is likely to be in hospital for a while. He’s been to the county hospital for an operation to reset the bone, and is now back in the town, in the cottage hospital there, in his own room, with a television and a lifetime supply of toffee. The toffee is a way of dealing with the forcible giving up of nicotine. He’s become a chain toffee eater. We speak to the doctors about Nancy’s urgent need to have him home, in his usual chair. No dice; Morris won’t be released until he’s a bit more mobile. Nancy sits holding his hand and looks utterly blank. Having no memory of the accident, and unable to remember the hospital from one day to the next, she’s having trouble with the context of his being there sufficient to undermine her ideas about who Morris is, exactly. She’s no longer entirely sure.

We have horses now, two cobs: a chestnut one and a gray. Mine, the gray, is huge, like a medieval war horse with a long wavy mane. In the evenings, when the children are in place and happy to Nancy-sit, Chris and I ride out onto the headland. Curious bullocks come to the fences and snort, or dash across the pasture kicking their muddy heels, fizzing our horses into a froth. Sheep take off in a sinuous swarm, sticking together but running scared. Blown shreds of feed and fertilizer bags flap against barbed wire. I’m reminded that there’s another way of being out in wild places, something that supersedes introspection. Staying on board, the physical harmony of it, negotiating hazards and the intermittent thrill of speed: I may be beginning to see the point of sport.

October stretches out mild and sunny, and the horses sit together, legs tucked sweetly under their tummies, in the long meadow grasses of the lower paddock, fed to satiation and drugged on sunshine. I take Nancy with me, under the white tape of the electric fence, presenting unexpected carrots from coat pockets, scratching under chins and into furry ears.

“Nice doggies,” she says. And then, “Listen to me, saying nice doggies! What a fool I am sometimes. They’re not doggies, of course. I can’t think precisely of the word, though.”

“Horses. They’re horses.”

“Course they are!”

She puts a tentative hand out to a velvety nose. “Nice doggies.”

*  *  *

N
OW THAT WE
have her to ourselves, Nancy comes everywhere with us. She sits with us to have breakfast, belching and apologizing, a faraway look in her eyes. (Something’s wrong, something’s missing, but what?) She’s becoming vague, losing track of where she is and what for. It was Morris who anchored her days. We need to prompt her to go to the bathroom now, and prompt her to come out again, or she’d sit there most of the morning. Hands are washed with transfixing care, each finger done scrupulously, like a surgeon scrubbing up, and then a lengthy towel-drying ritual begins. I have to remove the towel after a few minutes, when this threatens to go on and on and fingers are beginning to be rubbed red and raw.

After breakfast, if we’re not going to town for shopping, we go to the village. Nancy likes to go into the shop and look at all the packets, the piles and rows, the colors. She picks up biscuits and cake and bars of chocolate: things she knows she likes. It’s another Alzheimer’s way-marker, this childish craving for sugar. She likes to talk to the shop assistant. “Look at that, you’re very clever the way you do that,” she says as the assistant rings up the prices. “I’m sure I could never do anything remotely like that, to be quite truthful.”

We drive home the two miles along the winding seaside road, Nancy holding onto the carrier bag in the backseat and keeping up a steady monologue.

“Look at those things there. Look how far apart they are.”

“You mean the sheep?” I crane my neck to look round at her.

“Sheep, is that what it is? They’re animals of some kind.” She sounds as if she’s reminding herself. In Alzheimer’s, the learned subtleties of categories of objects become less and less refined over time: A butterfly becomes an insect, and then an animal, and then a thing.

“Look, Nancy, there are cows, on the right; no, the right.”

“They’re amazing, aren’t they? They’re so big. You don’t think they’re going to be so big but they are. They probably always have been. Just me being daft again.”

“You’re not daft, you’ve just lost your memory,” I tell her.

“That looks like the sea,” she says, sounding surprised.

“It is the sea. You live by the sea.”

“I didn’t used to. I never saw it from one year to the next, to be quite truthful.”

W
E TAKE THE
shopping into the kitchen. “Can I help you with all of this?” she asks, eager to be useful.

“Okay, then. You pass me the milk and I’ll put it in the fridge.”

“Is this the right thing?” She hands me the newspaper. The matching up of word and object is seriously adrift.

“No, the milk. Big tall carton, white. Cold. There. In the bag.”

She hesitates. The old hands, mauve and white and heavy with their burden of rings, hover over the bags. “I can’t see it.”

It’s not happening for her now. It’s disquieting. The words
milk, big, tall, carton, white:
They don’t add up anymore to the object right in front of her.

“That’s fine, just pass me anything.”

She hands me the newspaper again. I put it aside. “Thank you. Now, something else?” She’s holding the new jar of coffee.

“Can you put that in the coffee cupboard for me?”

“Yes, I’d be delighted, if you tell me where it is.”

“Go toward your room a bit. No. The other way. That’s right. Along there and … that’s it, stop. You’re there. Right there. The cupboard.”

She bends to the floor and runs her hand along it.

Why does she do this? Are words and objects jumbling themselves, so that
cupboard
mismatches itself with
floor?
Or is it just that she sees I expect something of her, and the floor’s the first thing that comes to mind?

“No, not down there. The cupboard. The door. Open the door.”

She pulls one of the kitchen chairs out from the table.

I go to rescue her. “Look, here it is. Turn around a bit. There you go. See the cupboard?” She goes to pick up the kettle off its stand. I put my hand over hers and lift it slightly to the handle of the wall unit. “There you go. Cupboard. Remember? Where we keep the coffee and tea. Open it and look inside.”

“You’re quite right. All the things are in there.”

I give her the coffee jar. “Can you put this in for me?”

She holds the jar up and pushes it a little further until it hits a can of chocolate powder. Then she brings it down again. “It won’t do it for me.”

She has enough latent knowledge to understand what’s needed to put something somewhere, lifting the jar into place, but doesn’t seem to recognize any longer that there needs to be a gap, a coffee-jar-shaped vacancy on the shelf. Nor can she coordinate the movements to place an object down and let go of it.

Nancy enjoys going into town. It’s an ideal size and shape for her, our little town. There’s just one main road, snaking from the harbor round into the high street, where for a brief stretch it’s been pedestrianized before opening out again by the church. There are side streets leading off, but most of the shopping is here, along the high street, which is crowded with eighteenth-and nineteenth-century buildings and twentieth-century shop fronts, some of them early twentieth century by the look of them, with prewar sign writing. There’s a stationer, a music shop, a delicatessen, a ladies’ wear shop with just the kind of skirts and shirts and cardigans that appeal to Nancy (but not to teenage girls), two small boutiques (that do appeal to teenage girls, but sell £80-a-pop jeans, so not to their mothers), old-fashioned drapers, Boots the chemist and Woolworths, plus jewelry and gift shops that rely on the tourists. Socially Nancy’s become entirely liberated from convention. Meeting people for the first time, she’ll likely as not embrace them and, tears welling, say how glad she is to see them again. “I knew you once when I was very small,” she’ll say emotionally when introduced. Random strangers are hailed in the street.

Nancy likes to go round the ladies’ wear shop commenting on things. If I want to make her laugh I suggest something for her in green. She can’t abide green: It’s one of the few things I can count on for her to remember.

One of the assistants might approach. “Need any help?”

“These were very popular, I was just saying to this lady here”—Nancy gestures toward me—“and everybody wore them when I was young.”

The assistant looks at the cardigans dubiously.

“They’re everywhere the ones like this in the place, all around us,” Nancy says. “And it’s really nice to see them again, you know, all together again because they like that. What am I saying? Listen to me blathering on. ‘They like that,’ she says. Honest to god, I’m losing my mind, I think. But, you know, they’re nice, these things, aren’t they?”

“Oh yes.”

“It’s awfully pretty! I was just saying to this lady here when you came in”—she gestures toward me again—“but she thought it wasn’t. So. We all have different tastes and it would be a dull world if we didn’t.”

“That’s very true,” the assistant says, giving me a special look and retreating. Nancy grins after her and her teeth are appalling, yellow and coated and every crevice jammed with food. She no longer wants to take her false teeth out and clean them and won’t countenance their cleaning in situ. Attempts have been made and abandoned. There were tears, fisticuffs, and biting. We’re used to the state of them but strangers recoil.

Nancy looks lingeringly after the assistant.

“What a lovely person she is,” Nancy says.

Babies in strollers are followed round the drugstore, waved at, sung to, engaged in one-sided conversations, which their mothers consent to warily.

“Look at you, you’re gorgeous, and you know it, don’t you? You’re much more beautiful than the others.” She leans forward, tries to pinch a rosy cheek. “The others are nasty about you, but don’t you listen.”

She’s transfixed by the sight of so many racks of nail polish.

“You used to wear this all the time when you were younger, when you were working, do you remember?” I say to her. She’d spend part of every evening laboriously doing her nails, taking off the day’s keyboard-chipped varnish, filing into soft points, applying various unguents and then color and topcoat from a vast collection on her dressing table. Morris filled her Christmas stocking with polishes.

She smiles delightedly. “How do you know that?” she asks. “You’ve been talking to someone, haven’t you? But it wasn’t this sort. It was the other kind, not in the same one, I mean. Jings crivens, I’m having trouble expressing myself today.”

I take her to the shampoos. These now take up a whole aisle. Every time I come in here there are more brands, more daring claims.

“Which one shall we get?” I ask Nancy.

“Oh, don’t ask me. I wouldn’t know where to start.”

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