The Book insists that a caregiver’s tone is paramount.
She stares. “I’m not. Speaking to. You.”
Chris appears and takes her by the hand: “Come and find Morris, come on,” steering her through the kitchen. I go into the hall and bouf, there’s a small explosion. Chris, renowned for not losing his temper, has lost it and is yelling. “Don’t you dare, don’t you ever, ever call my wife a bitch again!” I go into the kitchen and make a vodka tonic and hear them at it through the door. I’m thinking that I’ll go in and change the subject, offer whisky, get Chris out of there. But Chris is in full flow. He is talking, and then Morris, and then Nancy, and all of them calmly, taking their turn. A most bizarre half hour ensues in which Chris and his father talk Nancy through her recent behavior.
I hear Nancy responding in her shrill defensive voice. “What have I done to anybody? Nothing, nothing at all.”
MORRIS: You’ve been very rude to people and you’re upsetting them.
NANCY: When have I been rude to anybody? I wasn’t rude. Who told you that?
CHRIS: Nobody told me, Mother. I was there, standing right next to you. You called my wife a bitch and it isn’t the first time and it has to stop.
NANCY: I’ve never done anything of the kind. I’ve not used that word my whole life.
“Why did you bother?” I ask him when he emerges, having enraged Nancy into sulking and silence.
“No point at all, not for her, but it was good for my father. He got to air some recent grievances.”
This is true.
“You’ve been very rude to me, too, and sneering; you sneer at me and I don’t like it,” Morris told his wife.
THE DAY AFTER this, I wake feeling certain that I’m at the end of the road. I have to do something. I can’t go on, can’t physically. My legs are leaden, my heart heavy. I can’t face another day. I ring the surgery, and the doctor on duty says he’ll call by. He’ll reassess Nancy and perhaps prescribe something else. Her drugs may need adjustment.
The drug regimen of Alzheimer’s patients is one of the chief bugbears of their and their caregivers’ lives. The neurotransmitter breakdown inhibitor that boosts communications in surviving brain cells and at best slows the sufferer’s decline, the one that has four manifestations, four brand names: that’s the only drug available. Everything else an Alzheimer’s sufferer is prescribed is tried out from a menu of drugs developed for other conditions, tackling individual symptoms. That’s the best that can be done. Antipsychotics, benzodiazepines like Valium, epilepsy drugs, mood stabilizers, antihistamines, antidepressants, sleeping pills, Parkinson’s disease drugs, in rare cases even Ritalin: all might be dipped into, on a suck-it-and-see basis, and every Alzheimer’s patient has her own cocktail and combination. Every individual is an individual drug trial. Things are tried, don’t work, are adjusted. That’s how it is.
“You sound like you’re at the end of your tether,” the doctor says.
“Not quite,” I tell him, “I’m not quite there. But I can see it now, the end of it.” It’s in my mind’s eye, the end of a fat sailing rope, looming frayed up ahead.
The doctor has been in touch with the social work department, and so have we, and a care meeting has been fixed for tomorrow in town.
When the doctor arrives, I take him into the drawing room—respectably tidy, coal fire lit—and go and fetch Nancy. She is civil when she shakes his hand but begins to look suspicious when he sits by her on the sofa.
“I’m just going to ask you a few questions, Nancy.”
“If you must you must. But be quick about it.” Her disdain is penetrating.
The doctor has the laminated sheet out of his bag, the standard Alzheimer’s memory test known as the MMSE (mini mental state examination). Points are given out of thirty. There aren’t thirty questions. Ten marks are given for orientation to time and place, three marks for registering three words, five marks for attention and calculation, three marks for remembering three words, eight marks for language, and one for visual construction.
“Right then. Do you know what year it is?”
“No idea.”
“What is the month?”
She thinks a moment, shakes her head.
“What’s the date today?”
“Haven’t a clue.”
“What day is it?”
“No idea at all.”
“Right. Do you have any idea what the season is? What season are we in?”
She looks blank.
“Do you know what a season is? What’s a season?”
She purses her lips and looks straight ahead.
“I do, of course. It’s one of those things that’s over there, which is to say it’s one and two and three, that kind of thing.”
“Right. Next I’m going to give you three words to remember, and in a minute I want you to remember them and tell me what they are, okay?”
“What would I want to do that for? I don’t want anything to do with your things, it isn’t anything to do with me.”
He gives her the words, three short common nouns. Ball, car, man. “Can you say them for me? Ball, car, man.”
“I’m not remotely interested in that,” Nancy tells him.
“Can you repeat this phrase for me? No ifs, ands, or buts.”
She stares at him.
“Say this: No ifs, ands, or buts.”
She keeps staring.
“Do you know the name of this house?” the doctor asks her.
“No.” Annoyed. “And don’t ask me that again.”
“Where do you live, where is this house?”
“Edinburgh!” exasperatedly. “It’s Edinburgh! That’s where I live.”
“What’s the area called? This area we live in?”
“Edinburgh! Are you stupid? Edinburgh! Edinburgh’s where I live.”
“What floor of the house are we on? Are we on the ground floor, or upstairs?”
“Not a clue.” With some satisfaction, folding her arms.
“Can you spell this word—world. World. Like the world we live in. World.”
“What?”
“World. Can you spell it?”
“No, and I don’t want to. What would I want to do that for? All stupid questions! You and your wode.”
Nor can she spell it backward, or remember the three words he gave her to remember. The math test is skirted over quickly. It’s pointless, really, asking Nancy to subtract seven from one hundred.
“Right. Here’s a piece of paper. I’d like you to hold it in your right hand.”
Surprisingly, she can do this one and is happy to oblige. “This is my right.” She extends her right hand and picks the paper up.
“Can you fold the paper in half?”
She can do this, too. Two points have been earned. She puts the short sides carefully together and smooths the fold crisply and precisely in place.
“Now, put the paper on your knee.”
“Where?”
“Put it on your knee.”
She leans down to put it on the floor.
“No, put it on your knee.”
“This is my knee.” She lifts her left knee up and looks puzzled. The paper drops to the ground.
“Right, Nancy. Can you tell me what this is?” (It’s a pen.)
“Yes, of course, it’s one of those things that’s for you, and that’s yours, and it’s for holding and it goes along there. It’s yours, just take it yourself. Why are you asking me?”
“And can you tell me what this is?” (It’s a watch.)
Very irritably and shrill. “I’ve told you already, it’s yours, just take it, if you want something you just take it, don’t you, you don’t ask stupid questions about it, just take it!”
The doctor is sounding properly nervous now. His mouth is dry when he speaks. Nancy’s intimidating. Wild-eyed, spittle flying.
“Can you write a sentence for me—a short one, absolutely anything?”
“Like what?”
&n
bsp; “Anything you like. A short sentence of your choice. Just a few words. Whatever you want.”
“But what do you want me to do that for?”
“It’s a test. I just want to see you write something down. Just write one word if you like.”
He gives her the pen. She holds it, looks at the paper. Her fingers work their way round the Biro. She pauses and considers. Then she hands the pen back.
“I’ve got absolutely no need to do that and no interest in doing it, either.” High dudgeon. “Why should I do these things for you when you do nothing for me?”
The doctor clears his throat. He holds out the laminated sheet. “Okay then. Can you read this?”
“Where?”
“Just here. These three words. Can you read them?”
She looks at the sheet, at where his finger indicates, for a moment.
“That’s a c. And another c. And that’s an o. There’s a c and an o.”
“Right. Do you still have that block of paper? Here’s a pen. Can you copy these shapes onto the paper?”
“What shapes?”
“These shapes here, on the sheet.” They’re intersecting pentagons.
She looks at the pen and at the sheet of paper and her hand hovers. She looks at the sheet and at the pen and at her hand, frowning.
“Why would I want to write that down? I don’t want to,” she says eventually. “I don’t see the point and the point and not that at all.”
“It’s just a short test. It’s over now.”
“I know who did this,” she says, putting her hair behind her ears. “I know his name. I know why he did it but I’m not going to say, oh no. I’m not telling anything to any of you at any time.”
Less than twenty-four out of thirty indicates substantial cognitive impairment, the Internet tells me. Healthy people over the age of eighty should be able to score twenty-five. Nancy scored two. Just two out of thirty.
The Alzheimer’s Society says in its MMSE fact sheet that a patient should score twelve or more for there to be any point in taking the dementia-specific drugs. Nancy’s galantamine is to be phased out with immediate effect and a new drug given in its place, one recommended by the psychogeriatrician at the city hospital for mood swings and aggression (one we give her for less than a week as it makes her ill at night, comatose in daylight).
The final thing the doctor wants to do is to check Nancy’s blood pressure.
“No, I don’t think I want to do that.”
“It will only take a moment. Just want to check your blood pressure.”
“You’re not taking any blood from me, I can tell you that.”
“I’m not taking blood, just checking it,” he reassures her.
“Well, if you say so, but I’m not happy about it.”
She consents to her sleeve being rolled up. The plastic is wrapped round her upper arm. He begins to inflate it. Puff puff. Puff puff.
“Christ, that’s cold.”
“Sorry. It’s been in the car.”
Puff puff. Her face droops, her eyes close.
“You do that one more time,” Nancy says in her low warning voice, “and it will be the worse for you. And I’m not joking. I’m not kidding around. You will regret it.”
He puffs another puff and her other arm comes up with the fist balled tight. The doctor ducks.
Chapter 29
The very tones in which we spake
Had something strange, I could but mark;
The leaves of memory seemed to make
A mournful rustling in the dark.
—HENRY WADSWORTH LONGFELLOW
THE EMERGENCY CARE MEETING IS HELD IN THE TOWN, at the swanky new social work offices that look, appropriately enough, like a cross between a medical practice and a solicitors’ group and smell pungently of carpet. There are four of us present. Me, Chris, our care manager, and the care manager’s boss, whom we’re meeting for the first time. The first thing the boss has to say is that we can’t see the file because Morris would have to give consent. (Why would we want to see the file? Is there something in it that’s material? We’ll never know.)
“So how are you, and how are things?” we’re asked.
“Desperate, and desperate,” I say.
“We need to establish why Nancy isn’t on the residential waiting list,” Chris says, “and how we can get her onto it.”
“We can do another assessment,” the boss says. “Things seem to have deteriorated badly since the summer.”
“All that’s changed lately,” I tell her, “is that she’s no longer so charming with outsiders, and doesn’t mask her condition so well.”
We talk about Nancy’s MMSE result, which the doctor has been in touch about. “That really is quite a marked deterioration,” the manager comments. I point out that she hasn’t had the test before.
“We’re confused about what the criteria are for getting onto the waiting list,” Chris says again.
The sea change is coming. It’s seconds away. And it happens by accident.
“The thing is, we can no longer cope,” Chris says. “We can’t do it anymore.”
“Every day is a struggle,” I concur.
“Are you saying you can’t go on?” the boss asks.
At once, I begin backtracking, feeling as if I’m about to be judged inadequate.
“We’re at the end of the road,” Chris tells her. “We can’t any longer care for them, unfortunately.”
“So. You’re saying that you can no longer look after them. Is that what you’re saying?”
“Yes. That’s what we’re saying.”
“It’s much more difficult now,” I add, “to manage Nancy at home, because she’s threatening the children, and hitting them.”
The professionals look at each other.
“Well, in that case, emergency respite will have to be arranged with immediate effect,” the boss says. “We’ll have to consider the long term. And the Family Division will have to be informed.”
Family Division? I have visions of cars arriving at dawn, the children hauled off, and protest energetically. There’s an instinctive fear of social workers, the extravagance of their powers, buried just below the surface of all my dealings with them. The social workers say, with regretful finality, that they have no choice, now that the abuse has been reported; they have a legal obligation to report violence upon children.
No care places are available locally, so respite will involve a journey into the next county. We mention that Morris is keen to return to Edinburgh, and they tell us they can get names onto the Edinburgh waiting list. In the United Kingdom, it’s worth campaigning to have the list placement done by the social work department, rather than just going ahead and finding somewhere yourself. If it’s their referral, the nursing portion of the fee is paid by the sponsoring council. This isn’t to be sniffed at, being £150 or so a week each, saving £15,000 a year. Even so, it will be around £35,000 a year for the two of them (by national standards, this isn’t expensive). Discreet inquiries are made about means.
“They have the money to pay their own way for the first few years,” Chris says. “They have their life savings. The rest of it’s invested and will have to be de-invested.” It’s our house we’re talking about; that portion of it that Nancy and Morris own. The house will have to go on the market. All assets count. Their savings, investments, all of it will be liquidated into a pot from which the state will drink hungrily. It will leach away, month by month, until there’s £20,000 left. Only at that point will the state begin to contribute. At the time of writing, the rules dictate that only the final £12,250 will be left intact, untouchable by the state. This information hits Morris hard. It’s a disheartening thing to face, for those who’ve always been frugal. The people who held on to their ancient washing machine until it gave out, who were content with the old linoleum in the kitchen, who put money by for a rainy day—their rainy day has come. The make-do-and-mend philosophy was all about providing an inheritance for Ch
ris and his sister. But getting old and ill will take almost everything. It’s raining hard now.
Once you have it clear in your mind that Alzheimer’s is a disease, whose sufferers are ill, and that what’s needed for it is treatment, the idea that a nursing home is optional, a luxury, and will be invoiced on that basis, is deeply offensive and wrong.
Next, the care twosome pays a house call. It’s Morris they want to talk to and they go into closed session. He’s anecdotalizing and hoots of appreciative laughter boom out under the closed doors. On this occasion laughter isn’t a good sign. It means, almost certainly, that Morris is illustrating that the problems, such as they are, are blackly comic at worst. Later, Chris tries to talk to his father about the meeting but is met by the usual studied vagueness.
Three days later. The phone rings. Our care manager. Can she come out today to talk to Morris again? She’d want us in on the conversation this time. “Will you sit in? Because he doesn’t seem to believe that there’s a problem.” She asks me if I will be frank with Morris about being at the end of the road, at the end of my tether, and needing the two of them out. No, I can’t do that, I tell her. I’m not going to be a part of any staged resolution, no emotional pleas, no histrionics. I’m certainly not going to confirm anybody’s dark suspicions that this has all been about me.
Nancy’s up all that night, wandering, rattling doors, and ranting. She won’t take the sleeping syrup; she clamps her lips together and flat refuses to comply. Her nocturnal narratives begin to remind me of somebody with a head injury trying to keep herself from losing consciousness. One foot is put in front of another, literally but also verbally, without there being any really strong thread at work. Just keeping going is the thing, keeping walking and keeping awake, with whatever words come to hand.
She has extraordinary stamina. Nighttime sleep is intermittent and daytime naps have been given up but she keeps on going nonetheless. She badgers Morris all the next day and is still badgering when I deliver the afternoon tea.
“I’ve told you already, I want to go for a walk.”
“You can’t go for a walk, it’s dark outside,” Morris tells her.
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