“I have asked you a hundred times,” Nancy says.
“What are you talking about? I can’t walk. I have a wheelchair. You’ll have to push me. We’ll do it tomorrow. It’s too late now.”
“It was the same with my father. He was standing at the door and he said something to me and you closed it.”
“Your father?”
“You closed the door on him when he was here. He was talking to me.”
“Your father’s been dead for thirty years.”
“I know the truth and you don’t. He died last night.”
She’s weeping now.
“Thirty years!” Morris roars. “He’s been dead for thirty years!”
“It all comes to money,” Nancy tells him. “They want my money.”
“Who does?”
“They know who they are and where they went and you don’t.”
“I haven’t the faintest idea what you’re talking about.”
“Well, that’s what I’m saying. You’re my father.”
Morris (apoplectic): “I am not your father. I am your husband.”
Nancy’s whimpering. “I’ve told you a thousand times but you don’t listen. We could go home if it wasn’t for you.”
Morris is yelling now at the top of his voice. “I’ve told you! I can’t walk! You’ll need to push me in the chair.” And then, calmly, “It’s dark now; we’ll do it tomorrow.”
ON THE MORNING of the assessment I have a brief conversation with Morris.
“You know that it’s coming, don’t you? We can no longer cope with Nancy in the family. You know that, don’t you?”
“Yes.”
“And you will want to go with her, yes?”
He pauses. “I think so.”
He’s decided against Edinburgh, though. He’d rather stay up here. He doesn’t think the old Edinburgh friends would visit them, he says. Not once the novelty had worn off.
The care manager and the boss arrive, and ask, ominously, if they can talk to Chris and me first. We repair to the drawing room. The boss appears to have a speech prepared. She tells us that it’s going to make this whole process a lot more difficult if Chris and I won’t speak to Morris directly about our feelings and won’t agree to go on the record as having done so.
She’s talking about the phone call, the one in which I was asked to tell my father-in-law that I need him to leave, in circumstances (social workers present) that might look engineered. But this isn’t about feelings. It isn’t about Morris. It’s about Nancy, and Nancy’s unhappiness. Nancy’s health. I don’t think the social workers see that. I don’t think they understand Alzheimer’s. I think they look at us, Chris and me, and see people giving up, capitulating, dumping.
Morris needs to give permission for Chris and me to sit in on the meeting. He says he wants a confidential talk with the two ladies first. I say to him that I feel at this stage of things that he ought not to have anything to say to the social workers that he couldn’t say to us. This angers him. The social workers are hovering so I leave the room, embarrassed. Foolishly, I pause at the door, and hear Morris berating me for wanting to know everything, wanting always to be consulted, for wanting to be in charge, for being interfering and bossy.
Fifteen minutes later, we are admitted to the room. Nothing’s said about the confidential talk. Long explanations follow about how the waiting list works—not as a queue, it turns out, but strictly according to need. Every time a place comes up, the whole list is consulted for the best match. And it’s possible that a double room will become vacant this spring.
Morris is emotional, his eyes brimming, his voice quavery, when the boss asks if he is happy to go into the nursing home. I feel like I might cry myself. Pity and relief are fighting for top billing.
“Not really,” he says, “but what’s the alternative?”
“You could stay here. We could offer more help. But I think you’re aware that your family are having difficulty coping.”
“Well, if that’s the case, then there isn’t any choice,” he says.
The boss says something about confidentiality. Morris’s reply is surprising.
“There’s nothing you say to me that you shouldn’t say in front of my son and daughter-in-law. They have looked after us magnificently.…” The phone rings out and I have to excuse myself to answer it, so I miss the rest of this tribute.
The day before they’re to go off to respite, Nancy is spoiling for a fight. By lunchtime she and Morris are in open warfare.
NANCY: You are getting on my nerves, I wish you’d clear off out of here.
MORRIS: Oh that’s very nice. We’ll both shut up, then.
NANCY: You talk to me as if about I was a child.
MORRIS: No. I talk to you as if you were a child. There’s no “about” in the sentence. That’s what you should have said. Why don’t you rub your fingers together?
NANCY: Why should I do that?
MORRIS: You do it all day. Rub rub rub. I’d like to know why myself. Why don’t you twiddle your hair?
NANCY: That’s just ridiculous. I do nothing of the sort.
MORRIS: Why don’t you stick them up your nose?
NANCY: That’s completely ridiculous.
MORRIS: That’s right. I’m being ridiculous again. Which is another way of saying that I’m totally fed up.
Cases to pack. Morris doesn’t want to be involved in this. He watches television and I take suggested clothes and books through for approval.
When I go into their sitting room later that evening to take Nancy to bed, she has that look on her face: the warning look, pinkish violet, with lips in a tight purse. She goes to the bathroom and I sit on her bed to wait for her, feeling uneasy. Things can get out of hand at this point in the day. She sits on the toilet and free-associates. At least I think that’s what she’s doing. But it occurs to me after a while that she might be talking to her urine.
“You’re going to go there and do the right thing and go down, and that’s right. And I will have to talk to her about you and where you need to go next.”
Now she is having trouble with her underwear.
“Are you all right in there?” I call through.
“Yes. No. I’m coming. I’m coming, I tell you. I’m telling you straight.” Her head bends to deal with errant clothing and her voice is muffled accordingly. “You don’t go on right anymore. You used to know where to be but now you don’t. And she will have something to say about that.”
A few minutes later she trundles through.
“Right then,” I say. “Let’s get you changed for bed.”
“I’m not getting changed, I’m bloody freezing.”
“It’s warm in here, Nancy, with the heater on. I’m really warm. Aren’t you warm?”
I start to unbutton her cardigan. An old veined hand clamps itself over mine.
“Now come on,” I say. She just stares at me. She is as ever astoundingly strong. “We just need to get your nightie on.”
“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.
—HERBERT SPENCER
MID-FEBRUARY. THICK SNOW, BLUE SKIES. THE 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. JUNG
THE BOOK—AND PARTICULARLY, THE AMERICAN 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.
TWO 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.
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