Keeper: One House, Three Generations, and a Journey Into Alzheimer's (28 page)

“But I’ve spent all my life trying to get it and it isn’t there. You don’t know the first thing about it.”

I have her cardigan off now and she consents to her sweater coming over her head.

“Now that’ll do fine. I’ll just go like this,” she says, holding on to her blouse hem tight, her knuckles white.

“Look. Your nightie and your fleecy bed jacket. You’ll be warm as toast.”

“Hum huum, hum huum, hum hm-hm.” Her favorite tune. She hums it now. She can no longer rhyme.

I whip the vest off and get the nightie on, the zip jacket. “You’re going on your holidays tomorrow,” I say, grinning at her.

“I am not.”

“Yes, you’re going away on your holidays, with Morris.”

“Who’s Morris?”

“That’s your husband.”

“Oh. That’s what you say. That’s my husband, is it. You don’t look like my husband.”

“No. I’m married to your son. Yours and Morris’s.”

“I don’t have a son. I never had children and I’m glad because they just disappoint you.”

Here comes the crunch. The trouser and underpants removal from under the long skirt of the nightdress, pulled quick and altogether like the magician’s tablecloth. “Oh Christ! What the hell do you think you’re doing?”

“Good night, Nancy! Sweet dreams!”

Chapter 30

Life is the continuous adjustment of internal relations to external relations
.

—H
ERBERT
S
PENCER

M
ID
-F
EBRUARY.
T
HICK SNOW, BLUE SKIES.
T
HE RETURN
from respite is delayed by transport problems, and Chris has a series of phone conversations with the nursing home manager, in the course of which she says, “Can I ask, are you thinking about permanent care for your parents?”

Chris launches into the abridged story of our lives in the last two years and then gets to the point and confirms that he is.

“Because they could stay on, you know,” the manager says. “They seem pretty happy here.”

“Well, that would be ideal for everyone, if that were the case,” he tells her. “Let’s take it a step at a time. Let’s wait and see what Morris has to say to the social worker when she calls by.”

Next, we hear that Morris has booked to stay on in the nursing home for another fortnight. The extra fortnight morphs, within twenty-four hours, into the real possibility of permanence. Morris likes the nursing home. Nancy has been moved into a single room in the Alzheimer’s unit and he sees her at mealtimes. He doesn’t tell us about his plans directly; a message is conveyed through our care manager, who’s also instructed to tell us that he hopes we aren’t offended.

There’s a phone call from The Charity manager, Mary, who’s a good egg and empathic. She mentions that she had a run-in with someone in authority at the council about Nancy’s not being on the waiting list. The someone had maintained the until recently unanimous stance that Nancy wasn’t severe enough a case to be on the residential care list.

“Not severe enough?” Mary had echoed, incredulously. “She’s a lot more severe than plenty of the people you do have in nursing homes. You just try spending a couple of days looking after her. You’d see what she’s really like.”

Then she makes an illuminating point about the fundamentals of how these things work. “When you get to the point that you can no longer go on as a caregiver, and state that you can no longer go on, that you can’t do it anymore, then the state has to step in and take charge and find alternative arrangements. You say baldly that you can no longer cope, they have to take them in, it’s that simple.”

And that’s the reason they’re on the waiting list now. That’s the reason that the care manager has been on the phone to Chris this morning, saying that permission will almost certainly be granted for a council-sponsored permanent placement at the respite home, though they have to go through the motions of soliciting a local place first.

Chris calls his father and is relieved to find him remarkably cheery.

“I hear you are thinking of staying on, Dad.”

“Yes, thinking about it, yes.”

“I think that’s great news for you, really good news, if the two of you are happy and settled there. I think you should go for it, Dad. Stay on. We’ll make all the arrangements.”

“Right, son.”

“So you’ll be staying on?”

“I’m coming round to that way of thinking, yes.”

Chapter 31

Only the paradox comes anywhere near to comprehending the fullness of life
.

—C. G. J
UNG

T
HE
B
OOK—AND PARTICULARLY, THE
A
MERICAN VERSION
of The Book—says that taking up the nursing home place is just the beginning of a new life for both of you, the dementia sufferer and also the caregiver. The Book doesn’t seem to want caregivers to have any sense of relief or liberation when caregiving comes to an end. That might be unseemly, mightn’t it? Being glad. Being glad is taboo. The Book envisages that the caregiver will live close enough to the home to visit every day—though this might involve moving. The nursing home staff will be glad to see you popping in and out, The Book says. The nursing home staff will be glad to share tasks and to devolve some of them. You (the caregiver) can help with dressing, and feeding, and bathing, and care, quite apart from providing a face that still might be familiar and all its resonances of love and family. Quite apart from providing outings.

Interestingly, career nursing home managers with expertise in dementia often feel differently. Those I’ve come across, at least. Some of them, at least, are prepared to speak up for the wisdom of letting go. Having spent a good many months immersed in the online Alzheimer’s community, I find that one common experience shines out: that at some point along the dementia journey, the fact that the caregiver is close to the person stops helping them and starts hindering. So often, people find that it’s their own interactions with the dementia sufferer that are triggering their senile anxiety, however unwittingly. Sometimes people see this and remark on it. Sometimes they don’t and it’s only the outsider who sees.

The caregiver hates leaving their demented relative at the home, which is, after all, an institution, and may jar aesthetically on the nerves of the healthy, with its hospital look, its easy-clean surfaces and perceived lack of comforts. But then they discover that the demented one’s health and morale improve at the home. They find this hard to believe, because when they visit, all they see is unhappiness. The caregiver speaks to the staff about this—about their loved one’s unhappiness—and may be told tactfully that actually the outbursts only happen when the caregiver visits, and possibly it might be better for the dementia sufferer to be left to get on with this new phase of life undisturbed. That’s a hard thing to be told, and even harder to accept. After all, we think of ourselves as essential. We have been essential to the person for months and years, day in and day out without pause. Part of what disturbs us about leaving them at the nursing home is that we are missing from that environment; family and personal history are missing, and no one, surely, could be better off without those. The truth is that sometimes they are. Sometimes family and history exert too much pressure, provoking a chaotic mental state that can’t deal with the presence of pieces of the old life, things sparked in a damaged brain that dementia can’t make sense of.

T
WO THINGS APPEAR
to be true.

1. When Alzheimer’s sufferers get to the point of constant unhappiness at home, they are ready to leave. Nothing you do or try will make any difference to this.

2. All that matters, at this advanced stage of the disease, is that they are as happy as they can be, even if that means your having restricted access to them. If they can be got through the day with minimal fear, anxiety, rage, then that’s a good day.

It’s time to stop reading the dementia books. There’s a shelf full, the books placed there in acquisition order. They start at the left with the how-to caregiver books, proceed into the more medical tomes, the more specialized, soften abruptly into memoir, then take a swerve into American publishers, books of alien sizes and typefaces, titles dredged for and blundered into on Amazon. Some of these are rather wacky. Some I’m not sure what to make of. I meet a retired neuroscientist on a bus, a stranger, who sees what I’m reading and strikes up a conversation. He agrees with the basic premise of the book in my hands, one I’d taken to be eccentric, that Alzheimer’s disease is a myth. “There isn’t really any such thing, you know,” he says, eyes twinkling. “It’s just that some people age faster than others.” This brings me up short. But do the two camps really have to be at odds, normal aging versus abnormal event? Isn’t it possible that a condition that presents itself as the acceleration of brain aging is itself a disease? In any case, what about the 115-year-old woman, in the news recently, whose brain showed no signs of dementia at autopsy and was said to be as healthy as that of someone fifty years her junior? If she was merely an exception, how many exceptions are there? Are we two kinds of human, those who do and those who don’t experience brain failure, the key to the mystery mundanely genetic?

Members of the Alzheimer’s backlash, the dissenters like the writers of this “myth” book, have to admit that early-onset dementia is a disease. But like the neuroscientist on the bus, they regard late-onset dementia as a human-condition condition, one that will never find a cure. They cite the work of scientists at Harvard University in pinpointing the disintegration of myelin (our white matter) in the brain, which makes electrical signals between neurons weak and diffuse, as just as likely to explain
senility
. They point out that plaques may be beneficial—something, of course, that the pro-tau research body would also agree with. They point out that some dementia autopsy brains show neither plaques nor tangles, and that some autopsy brains of people who didn’t suffer from dementia are plaque riddled. Alzheimer’s as a disease, they say, is a myth fostered by pharmaceutical companies. I find others sympathetic to these ideas in the online community: those who think that labeling people as having dementia is a form of bone pointing (an Aboriginal idea, in which the subject toward whom the bone is pointed convinces himself he is doomed, and dies accordingly); others who claim there’s no actual loss of self entailed in the progress of dementia, other than for that imposed by society, which conditions the ill culturally and socially to behave in a demented manner.

If some or all of this is bonkers, there’s no doubt that the way healthy humans regard those with brain illnesses, brain damage, brain disability is in general shockingly uncivilized. I find myself averting my eyes in the supermarket as a woman with dementia of some kind rants and accosts passersby, all of whom avert their gaze in turn, and begin to create a margin as they pass, a collusive semicircle of safety. We’re embarrassed by dementia. I’m embarrassed by dementia. The unpredictability of how somebody may act, what they may say to you—these are factors. I smile at an old lady with dementia on the bus and she shouts at me for the rest of the journey home. It’s safer to keep your distance. In addition, there’s the shame of being old, your body failing. We treat the old with contempt, their weakness provoking bullying by the healthy. Is it because they rub our noses in our own mortality? Because we see mortality as a failing, after all? Perhaps subconsciously we feel the bone’s been pointed, and that we should keep ourselves clear. Mortality is contagious; we catch it from our parents. It’s hard to treat somebody with failing thinking and language skills as a person as fully human as yourself. You may not think so. Every instinct in you might insist otherwise. In the supermarket, though—how are you then, when the old lady thanks you for finding the jar of mayonnaise, then smashes it on the ground, hits you with her basket, calls you her daughter, tells the checkout staff and everyone on the street outside that you’re taking her home? It’s so much worse if the person is haphazardly dressed, dirty, smells; it’s so much harder to treat them like an equal.

These may sound like accusations but in fact I’m trying to excuse the behavior of people toward the demented, which tends to be awkward at best, unkind, and thereafter progresses on a sliding scale into savagery. It’s untrained. It’s untrained, certainly, though should the behavior of humans toward others need training to be fair? If it does, it can only be because some unfortunate
ghost in the machine
has survived, subconsciously, in our own minds, that marks out brain afflictions as dehumanizing and dehumanizes accordingly. This is the only way I can account for the behavior of the many doctors, specialists, and consultants written about in dementia forums who are on the record as having treated those with Alzheimer’s so badly and so dismissively. And how else can we explain the treatment of the elderly in nursing homes (some elderly, in some nursing homes), who are talked to like bad children, neglected, ill fed, abused, or even—as in a recent case in the newspapers—tied onto their chairs?

The old woman on the bus who shouted—she was real. But the woman in the supermarket—I made her up. Or rather my brain did, while I was sleeping. The thing is, she was me, the woman in the dream, the Barbour bag lady in thirty years’ time. She wasn’t like me, she was me. It was me. All that separated us was time, and the dementia roll of the dice that will determine whether in 2040 I’ll be one of the 90 million, or not.

It’s time to stop reading the dementia books.

Chapter 32

Things that were hard to bear are sweet to remember
.

—S
ENECA

T
HIS IS WHAT MIGHT HAPPEN TO OLD PEOPLE WHO GO
into nursing homes. They have secure, dull lives looked after by gentle Eastern Europeans in easy-care aprons. Their families ring when they get around to it. Their tidy, institutional bedrooms with the matching floral duvet and curtains show little sign of life, other than for the book and glasses by the bed, and the two propped cards that have arrived from old friends.

It’s two hours’ journey from the house to the home, which is a ranch-style bungalow, purpose-built, U-shaped with deep wings and a steeply pitched hipped roof. Inside it’s warm, draft-proof, with tight modern windows, wide carpeted corridors, jolly pine furnishings, and chain-store chandeliers.

We go to visit at Easter; our holiday route almost passes the door. There has been excited anticipation of our visit. Nancy and Morris are washed, pressed, have had their hair cut that very morning. Because we are en route and in a rush, we anticipate we’ll be there for less than an hour, but that seems to have been forgotten. Nancy and Morris’s lunch has been delayed indefinitely in our honor. As it turns out, we’re running late and spend twenty-seven minutes in the building. Chris speaks to the manager and asks where we can have our meeting. He doesn’t use the word
meeting
, of course, but that’s what this feels like, a hurried business conversation in a motel conference facility. We use an alcove designed for the purpose just by the front doors, a cubbyhole furnished with three chairs.

Morris isn’t around. He’s wheeled himself off to his room to get a birthday card for Caitlin, one that we bought and mailed to him in readiness. I go into the dayroom and see an old lady there. She’s sitting alone in a winged armchair, rubbing her hands energetically together and muttering.

“Oh, and she said, she said it was all right, so I suppose it is. It must be if she says so. She knows everything.”

Nancy. In some bizarre unexpected way I have been missing her. Her eyes are fixed unblinking on the table twenty feet away, where six residents and two staff are sitting having a conversation, desultorily engaged in nursing home activities. Playing cards. Sticking down a magazine cutout collage. I stop at her chair and stoop to touch her arm and her face shifts from its blankness briefly to a look of alarm and then into a great beaming smile.

“Oh! Hello! What on earth are you doing here?”

She seems genuinely to recognize me. Chris had this experience last month, when he came to see that they’d settled in, and his mother greeted him with “So how is the family?” Her improvement since she’s been here has been quite remarkable, say the staff. That’s why the social workers have already let it be known that they wouldn’t let her out to live in the civilian world again. Morris, a couple of weeks ago, was on the phone to Chris to say that he was thinking about returning to live with us, and Chris had had to tell him so.

“I’ve come to visit you,” I say, kissing her and offering an armful of supermarket tulips. “Look, flowers for your room. And a box of Dairy Milk, your favorites.”

“Oooh, thank you,” she says. “Gimme gimme!” Making playful grabbing motions.

“Your grandchildren are just round the corner, in the visitor chairs,” I say to her. “Do you want to come and see them?”

“Oh no. No, thank you. I don’t think so. Not today.”

“Come and see them. Just for a minute.” I hold my hand out and she takes it, getting up and toddling after me. “Well, all right, then. Seems like I don’t have any choice. As usual.”

Nineteen minutes left. I look covertly at my watch. Morris arrives in his chair with Chris, all smiles, looking well.

“Here he is,” Nancy says. She seems to know who Morris is. She tells him off when he starts talking about their new life: “Oh, hold your wheesht, you,” slapping him flirtily on the knee. We talk about our trip south, and ask about the home. They have a pretty good social life, it seems, though Morris has been reprimanded for preferring to sit with a book than join in, he tells me. He’s reading about Hitler’s last days in the bunker. He urges me to visit his room and see his certificates and there they are, thumbtacked to the wall. One is for winning at the Beetle drive, the other for being placed third in carpet bowls. The children don’t say much and neither does Nancy, but she smiles at everybody and her teeth are clean. She is altogether immensely clean, her fingernails white and her silver bob immaculate. Morris has no complaints, he says, other than about being kept waiting for meals once they’re seated in the dining hall. Their timekeeping here isn’t that impressive and it’s annoying having to wait. The food’s pretty good, though. And he has television in his room.

“How’s she been?” I whisper to Morris, while Chris is chatting to his mother.

“Pretty good,” he says. “She’s in this part of the home with me some of the time … but the rest of the time she’s in the Alzheimer’s wing, locked up.” He looks embarrassed.

“What’s it like through there?” I ask, looking toward the security doors.

“Just like this side, a bit smaller, but otherwise a mirror image of here,” he tells me.

Nancy has gone through the looking glass.

“She wanders into other people’s rooms, apparently,” Chris tells me later. “Ignores them, goes and looks out of the window and then leaves without saying anything.”

It’s time to go.

Nancy tries to follow us out of the building.

“Will you be back soon?” she asks, anxious, trying to grasp at my hands.

“Yes,” I say. “Very soon,” nudging at her arms so I can close the door.

Morris is barking instructions at her. She turns to him and she says, “Just wait till I get you home.”

A
LMOST EXACTLY A
year later, Morris died at the home from kidney failure. During his last illness he spent a lot of time anxious about Nancy, unwilling to stay in bed. She might be up to something. He ought to be there. He couldn’t rest.

Nancy didn’t understand or mark his passing and his funeral service was held in Edinburgh as he wished. Nancy was judged too ill to make the journey, which would have entailed spending most of a day on the train south, a night in the city, and another day on the train back. In some ways she’s very ill, and in others amazingly robust. Physically, she continues to be good for her age. The nursing home staff speak about her with touching protectiveness. She remains somebody who wants to be doing things and busy and finds it hard to sit still. If she’s awake, she’s usually on the move. She’s prone to aggression; there are long gaps between haircuts as they have to pick the right day to embark. Haloperidol (Haldol), an antipsychotic, is administered in small doses, a half teaspoon two or three times a week, on an ad hoc basis of need, and doesn’t appear to slow her down. She’s unaware who anybody is, but keen to be included in the group, despite her communication difficulties. Shrunken, but insistent on wearing favorite old trousers, she gathers spare fabric bunched up at the waistband with one hand as she shuffles about. She looks like a very old lady now. Having rejected, finally, the wearing of false teeth, her food’s mashed up for her; she eats only with her fingers, and can be insistent about keeping moving, eating a little on each circuit of the home. Often she hasn’t the patience for dealing with food at all, and steals a neighbor’s tea biscuits later. She gets dietary supplement drinks. On a good day she’ll react positively to the photographs in her room, though she can’t put a face to a name. She talks to staff about her parents sometimes. Occasionally she mentions a man she used to know, a man in a wheelchair.

As for me, I’ve arrived, already, at a state of self-protective forgetting. People are good at that, at moving on, dwindling the past into a story we tell ourselves, into parables, and choosing the future over the past. It’s true that every now and then mistakes that I made rear up in memory, like splinters surfacing out of a finger. Memories of bad days, revisited synaptically in sound and vision, far outweigh the good. But it’s also true that, as Oscar Wilde put it, “The great events of life often leave one unmoved; they pass out of consciousness, and, when one thinks of them, become unreal. Even the scarlet flowers of passion seem to grow in the same meadow as the poppies of oblivion.”