Keeper: One House, Three Generations, and a Journey Into Alzheimer's (27 page)

“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?”

“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
.

—H
ENRY
W
ADSWORTH
L
ONGFELLOW

T
HE 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 Chris 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.

“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.”

O
N 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.

N
ANCY:
You are getting on my nerves, I wish you’d clear off out of here.

M
ORRIS:
Oh that’s very nice. We’ll both shut up, then.

N
ANCY:
You talk to me as if about I was a child.

M
ORRIS:
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?

N
ANCY:
Why should I do that?

M
ORRIS:
You do it all day. Rub rub rub. I’d like to know why myself. Why don’t you twiddle your hair?

N
ANCY:
That’s just ridiculous. I do nothing of the sort.

M
ORRIS:
Why don’t you stick them up your nose?

N
ANCY:
That’s completely ridiculous.

M
ORRIS:
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.”