Keeper: One House, Three Generations, and a Journey Into Alzheimer's (26 page)

Dumping. Do we
dump
people in hospitals when they’re ill? Is that the language used? I worry that we’re all confusing a physical disease with natural aging, believing that we ought to be able to contain aging and death within the family, recognizing the failure and stigma of doing otherwise. We confuse dementia with old age, and it’s a moral given that old age oughtn’t to be punished by exclusion; put in those terms, there’s no argument.

I sit close to two girls in a coffee shop. One says to the other, “Is it true your gran has gone into a home?”

The other one nods. “My mum said she couldn’t cope with her anymore.”

“God, your poor granny, those places are terrible.”

“I know. I’m so angry with my mum for putting her in there. We went to see her and she was crying.” She’s blushing a deep red.

There’s a strong whiff of shame about parents going into a nursing home. I worry that the medical profession colludes in this. I see them colluding all over the Internet. One American woman reports that her Alzheimer’s-suffering mother, at about Nancy’s stage of the disease by the sound of things, has four doctors and a therapist, all of whom have agreed that putting the mother into residential care would be “like killing her.”

The weekend before Christmas we have our party. Nancy and Morris go into respite at the private home for the weekend and appear to enjoy it. Nothing is said about staying on, this time, and there are no sales calls. We have two hundred guests, a magician, a movie-and-pizza splinter group upstairs for those under four foot six, and tipsy teenagers gathered round the pool table.

“It looks pretty likely that Nancy and Morris will go into residential care next year,” I find myself telling people when they ask (and everybody asks). I don’t seem to have any other form of conversation. I seem to feel the need to brief everybody there, individually, about the situation. I’m properly defensive about the reasons.

“And if they do go into care, will you be moving away?”

That’s what everybody wants to know. Will we be staying or not. There’s a strong chance we won’t be, but I hesitate to admit this.

We’re an odd assortment of souls, gathered here together tonight. Most of us are
incomers
(less charmingly,
blow-ins)
, who have come to live on the peninsula from the outside—outsiders and not locals. The sheer intrepidity of incomers is impressive, like the organic farmer over the hill, who persists in trying to grow vegetables on an economic scale in these weather conditions, despite constant setbacks. Some people I’ve met came because they’re artists and because it’s relatively cheap to buy an artist’s house on the shore; many are here because of house prices. There’s a lot of sea view, a lot of fresh air, a lot of unspoiled wilderness on offer per pound spent. And very little crime. People don’t lock their cars in town. People don’t lock their houses. But once people are installed, many of them become possessive of the place. They don’t like to hear it criticized, and leaving is seen as rejection. They’re openly perplexed by people not staying on.

“Don’t tell people you might not be here more than two or three years,” somebody says to me at the party. “They won’t bother to get to know you.”

“It’s irritating when you make friends and then they leave,” someone else tells me. “You invest all this time in them and then they’re gone.”

The occasional local die-hard grows donnishly disapproving. “Why come here if you don’t like extreme weather, though?” they ask, in a tutorial manner. “But why come here at all if you didn’t intend to stay?”

Living here can be a trial of strength. That’s one way of looking at it. The challenges of meteorology, of isolation, of making a living are looked upon by long-established residents as a test of true grit. “Naah, they left after eighteen months, they couldn’t hack it,” they say, at one of the many village socials, dismissively of some poor soul. It’s important to show that you can hack it, that you relish hacking it, that you’re man or woman enough.

“It’s only a force nine, what are you talking about; that’s just for drying your washing.” “Call that winter? That was only a shower. You just wait.” As Sydney Smith observed: “No nation has so large a stock of benevolence of heart as the Scotch. Their temper stands anything but an attack on their climate.” But the joke’s on Sydney Smith. Almost everybody I know who feels this (on occasion quite savage) defensiveness of the superiority of
here
and the inexorable decline of
there
is English. Adopted Scots.

N
ANCY AND
M
ORRIS
come back glumly from their weekend, and remain glum over the holiday. On Christmas morning we gather in the drawing room for the children’s present-opening ritual, something my in-laws would once have enjoyed, despite carping about the overgenerosity, the waste of wrapping paper. Nancy is kept busy with a tin of gaudily wrapped chocolates and Morris is silent. At Christmas lunch Morris picks at his food in silence and Nancy is occupied trying to eat gravy with her fingers. Afterward, I give Morris the option of an afternoon by the TV with a box of chocolates, and this is gratefully taken up. The two of them sit by a roaring fire in paper hats, eating truffles and drinking from the various bottles I put on the tray, flicking between Christmas Day programs, and seem almost jolly.

After Christmas, friends come to stay for New Year’s Eve, another family of five. One evening while the ten of us, crammed round the kitchen table, are having supper, and Nancy’s supposed to be eating hers with Morris, she appears at the door, hands on hips, nodding slowly at us all, her face bright red, veins pulsing in her neck.

“Nancy! What can we do for you? Have you finished eating?”

She stares at me and then says, “So, you’re all still here, then?”

“Er, what?”

“I said. I said so you’re all still here, then. You’re all still here.”

“What are you talking about? We live here. And these are our friends, visiting for New Year.”

“I’m not having it. You all have to go now. Now. I mean it. Out. I said now.”

I bundle her back into her sitting room and close the door. I am angry.

“Now listen to me. Don’t you dare embarrass me in front of our friends. I’ve had quite enough of your mouth lately. Stay in here just now. Stay here. Stay put,” I snap at her, and then I return to the kitchen, aware of a subtle shift in mood. I’m embarrassed by my own reaction as much as by Nancy’s rudeness. Everybody heard me shouting at her. Various explanatory sentences are born and die in my head, particular, and then at last general: None of it makes any sense if you haven’t been here and lived through it, though saying as much sounds trite. I shrug it off, as I have learned to. Mr. Bennet in
Pride and Prejudice
flashes into my mind, chastened by his part in Lydia’s disgrace, and feeling, despite Elizabeth’s soothings, that morally he ought to suffer. “I am not afraid of being overpowered by the impression. It will pass away soon enough.” And even while I’m thinking this and feeling bad, I’m also feeling grateful that I have this store of associations on hand, and the healthy brain that delivers them up.

On New Year’s Eve, Morris expresses a positive disinclination toward staying up late. They’d rather go to bed at the usual time, thanks, he tells me. We drink a lot, have champagne at midnight with a dozen or so neighbors, watch the fireworks going off out on the headland, and wish each other, with greater sincerity than is ordinary, a very happy New Year.

Chapter 28

This long last childhood
Nothing provides for.
What can it do each day
But hunt that imminent door
Through which all that understood
Has hidden away?

—P
HILIP
L
ARKIN

T
HE NEW YEAR BRINGS NEW DEVELOPMENTS.
T
HE FIRST
of these is that Nancy begins to declaim. She’s a mobile declaimer, addressing herself to each of the rooms she walks through. As she walks she makes three statements. She hasn’t spoken to me directly since Christmas. Instead, she has fixed on three repeated lines:

“And I will never be.

“And I will never know.

“And I will never be again.”

If I’m in the kitchen when she passes by, she doesn’t seem to notice me. She looks straight ahead. “And I will never be.”

“Hello, Nancy,” I say. Even when I address her she doesn’t look toward me.

“And I will never know.”

“Just having a walk? Morris’s through that door there, straight ahead, if you’re looking for him.”

She goes up the step and rattles the handle of her sitting room door.

“And I will never be again.”

When she gets tired, she goes and sits by Morris and needles him.

“I’ve been waiting for you for twenty-five years!”

“It’s forty-seven years, actually, that we’ve been married,” Morris corrects her.

“I’ve been waiting for you and you haven’t said anything to me.”

“What do you mean? We spend all day together. We talk to each other all day.”

“You haven’t said a word. Not a word. A real word, I mean, and not one of the other ones.”

“What are you talking about?” he bellows. “I’m always here and you’re always here and we’re always talking.”

Much later, passing by their door, I find the same conversation’s still going on.

“You never talk to me. I sit here and I talk and you don’t answer,” Nancy’s saying.

“That’s rubbish,” Morris says emphatically. “That’s total rubbish. Think before you speak. Think what you’re saying because it’s rubbish and you know it’s rubbish.”

“I talk and I talk and you don’t listen.”

“Shut up! Just shut up, will you,” he cries.

“Don’t you dare to tell me to shut up.”

“Well, be quiet then. I want to watch this TV program.”

“I want to watch it but you won’t let me.”

“What do you mean? You’re sitting right in front of it.”

“You won’t let me do anything.”

“Can you just be quiet so I can watch it?”

“I didn’t say a word.”

S
HE’S DISCOVERED THAT
the mirror in her bathroom also has a friend in it. She goes there in the evening and talks to her reflection in the moonlight.

“Oh yes, and I always said so. I said that about you but nobody believed me. That’s what happens, though. To me, I mean.” She pauses as if the reflection is speaking. Perhaps it is. “Oh my goodness, yes. You’re quite right and no mistake.”

“Hello, Nancy, what are you up to in here in the dark?” Chris asks amiably, putting the light on.

He doesn’t often call her Mother anymore. She won’t answer to it, might query it, might want to make declarations that are best avoided.

“That’s my friend,” Nancy says, smiling at herself. “I only have one friend and that’s her.”

B
LACK
S
UNDAY
. N
ANCY’S
in a state of perpetual rage. Jack is threatened. He has the temerity to touch the dog in her presence.

“What are you doing that for? Get out of here. Do as you’re told.”

He leaves the dog and goes to stand by the fire.

“Get out of here, you little bugger.”

“What? Why, Gran?”

“Come closer to me and I’ll get you. I’ll kill you. I will. I’ll kill you. I mean it. You filthy little bastard.”

We don’t talk to her about these outbursts anymore. There’s no point and everybody gets pointlessly upset. Morris pretends he hasn’t heard and Nancy’s determined she didn’t do anything wrong. She’ll be difficult for the rest of the day, if she’s told off. The reason for the telling off doesn’t register. Nothing is learned by it and nothing is gained. If she isn’t told off, chances are her rage will subside pretty quickly. So, strictly in terms of the balance sheet, it’s better to ditch the moralizing. Though this is difficult to explain to Jack.

Like an anorexic girl finding power over her mother in not eating, Nancy begins to decline food, any food, whether left out for her to forage in the kitchen or offered on a plate. A fish pie with a mashed potato top, served to her in a bowl with a dessert spoon, is rejected untasted. I go and kneel by her chair and try to spoon some of it into her.

“I don’t like it! I’m not going to eat anything if I don’t like it!”

“You need food, though, Nancy. Usually you love fish pie. It’s got lots of cream in it, and prawns. Just try it. Just have a bit.”

She takes a spoonful from me then talks with her mouth full, spitting haddock. “You’ve given me far too much! Ask them and they’ll tell you straight. There’s too much in my mouth.”

“Just stop talking and eat it.”

She chews and chews, looking pained.

I offer another spoonful. A protective, shielding hand goes up, her fingernails an ominous dark brown.

“You’ve got to eat something or you’ll get ill.”

“Don’t make me laugh.”

“No, I mean it. You can’t live on biscuits. You need some protein and some vitamins.”

Nancy’s head goes back disdainfully. “No no no. No, they don’t. That’s stupid. You don’t know what you’re talking about. You really have no idea about anything or any education.”

“I mean it. You need some real food or you’ll get poorly.”

Her hand is slammed on the dinner tray.

“Well that’s
not
what they do in Edinburgh.”

“Perhaps you should go back to Edinburgh, then, where you could eat biscuits all day.”

“Yes. Yes. I’m going back tonight.”

Morris mutters something that I half hear.

“Is that what you want?” I say to him. “I can arrange an Edinburgh residential home if that’s what you’d like.”

“I’d go tomorrow if I knew where to go,” he says.

*  *  *

N
EXT, THE WHISPERING
starts. It’s curiously disconcerting, this whispering. Nancy talks to herself under her breath all day and for much of the night, rehearsing imagined wrongs. Almost all of what she has to say begins with “she.” The whispered undertone follows her, precedes her, announcing her arrival at the half-opened doors of other rooms. It’s difficult to make out what’s being said unless you’re up close to her face. I find her early one morning inserted tight behind the wide-opened door of the day bathroom, pressed hard between the wall and the door, a length of toilet paper held up to her chin, and only know she’s there because of the whispering. “She can’t and she won’t, it won’t be like that, I’ll find it again, I’ll take it there, and there will be the end of it, and then they will come, and I will tell them, and they will be glad, and I will be there again, and then I will come home, come here, or not here, where is here, I don’t know, and then we will know, we will all know, and I will be right, and she will be wrong.”

Then Nancy stops washing or wanting to wash. The caregiver arrives for the Monday morning session and finds that she can’t get Nancy in the bath. The bath is run but Nancy won’t get in it. Nancy gets her way. The caregivers feel that they can’t pressure clients into being clean if they don’t want to be. I step in. I pressure without a qualm.

“Come on, Nancy, time for your bath.”

“I’m not having a bath. I don’t need one.”

“You are. You smell.”

“I do not. Don’t be ridiculous. I never smell.”

“I hear what you’re saying, Nancy, but unfortunately you’re going in the bath anyway.”

“No, I’m not.” A little scream. A foot stamped hard.

“Yes, you are. I’m not taking any nonsense from you about this, you have to have a bath every now and then, and you are beginning to smell bad.”

“It doesn’t bother me so why should it bother you?”

This is actually a really good question and surprisingly sophisticated in the current scheme of things.

“It bothers me because you smell and I have to look after you,” I tell her. “It bothers me because you are making the house smell. And you will get ill if you stay dirty. So come on. None of your nonsense [historically, a favorite child-chiding phrase of her own].”

“You’re NOT LISTENING.” She’s shouting now. “I’m NOT GETTING IN.”

“Yes, you are. Get your clothes off. Get in the bath. You’re filthy. Your underwear is filthy.” Inspiration strikes. “Everyone can smell you. They will talk about you and say how dirty you are.”

As ever, alluding to what the neighbors might think does the trick. She starts to take her sweater off, kicks off her shoes.

“Well, all right then, but I’m not happy.”

Once she’s in the bath she loves it. She starts to sing, war-blingly.

“When all the men are dead now, and the world has come to me, and the way I bring home and the sort I do then, and it’s the same for me.…”

She plays with the bubbles, purrs when her hair is washed, and is reluctant to get out. And she can still rhyme.

Eating problems escalate. Like a choosy toddler in a high chair, she clamps her lips shut and then her eyes and turns her head away from the spoon. The Battle Royal of the Baked Beans is typical. When she’s refused meals for more than twenty-four hours, beans usually break the fast. But not any longer.

“I’m not having it! I’m not,” she cries, jumping to her feet, throwing her tray across the room and exiting. I find her in her usual retreat, talking to her bathroom mirror, a stray thread of moonlight reflecting off one eye.

“And she says the same; always the same bloody lies.…”

Then she sees me. “And what do you want?” Her most imperious tone.

Later, after she has consented to toast and jam, eaten a quarter of a slice and passed the rest to Morris, I find her in the corridor.

“Hello, Nancy,” I say cheerily. “How nice to see you. How are you?”

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.”

M
ORRIS:
You’ve been very rude to people and you’re upsetting them.

N
ANCY:
When have I been rude to anybody? I wasn’t rude. Who told you that?

C
HRIS:
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.

N
ANCY:
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.

T
HE 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.