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?
—PHILIP LARKIN
THE NEW YEAR BRINGS NEW DEVELOPMENTS. THE 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.”
SHE’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.”
BLACK SUNDAY. NANCY’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.
* * *
NEXT, 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.”
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?”
“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.