Keeper: One House, Three Generations, and a Journey Into Alzheimer's (17 page)

Chapter 19

The trouble with troubleshooting is that trouble shoots back
.

—A
NONYMOUS

H
ERE’S SOMETHING NOT COVERED BY
T
HE BOOK,
other than in a veiled and decorous way.
Sufferers will need help using the bathroom
. Unfortunately, Nancy won’t accept help using the bathroom. She won’t
go
if anyone else is present, and is outraged by the suggestion that she use the paper hanging by the toilet. We change her underwear at least once a day. Bedding is also affected, and added to Morris’s problems, this means that quite suddenly we have masses of washing to do. But that’s not the worst of it. That’s just laundry. The much worse thing that’s new is that Nancy has started squatting on the floor. Sometimes she tries to hide it. Excreta are found behind the toilet, lurking behind curtains on windowsills, and on one memorable occasion, hidden behind paperbacks in the library—the kind of discovery that’s unexpected late at night when you’re looking for something to read. If she can be persuaded to use paper it is rare that it’s flushed away. Unpleasant sections of toilet roll emerge from cardigan sleeves. She’s taken to cleaning the toilet bowl with her hands, so we are careful about not letting her touch food. The long fingernails have to go.

Stuck at home a lot of the time, companion to a man she believes a stranger, Nancy becomes despondent. The fact of her no longer recognizing Morris has a huge emotional cost. She’s alone in the world now, and unhappy, and it’s as if her unhappiness is beginning to leach out. It fills the air. It coats the walls and furnishings. This isn’t just metaphorical. Despite twice weekly baths, my mother-in-law has acquired a smell, a sweet and sweaty smell with a dark undercurrent: feces, armpit, old organs, fear.

Morris is ill and the doctor comes to visit. They have a long conversation together. Later she rings and tells me that Morris is convinced that Chris and I won’t stay on the peninsula long, that we’ll up and move to the south of France and leave the two of them here all alone.

“The south of France?” I echo. “What on earth gave him that idea?”

It’s embarrassing. Is that what he’s been telling his home care confidante, or perhaps, what she has been telling him, having misinterpreted something overheard—and is that why people in the village have been asking how long we’ll be here?

Morris has grown dangerously unsteady on his feet. His aides have doubled in number so that twosomes can cooperate on the heavy lifting. The consequences of this prove far-reaching. He can’t manage his bathroom visits alone any longer. He’s too unstable to manage the pulling up and down of trousers. He has to keep his hands on the Zimmer frame or he will fall. This puts the poor man in a very tricky situation. What makes it especially tricky is that Nancy stops cooperating. The manner of his demanding that she help, and her refusing, becomes an explosive part of every day. Chris helps Morris when he can, but often Chris is on the phone at the crucial moment. Morris would, in any case, far prefer that Nancy help him. He certainly doesn’t want me in there, a scruple for which I’m grateful.

“Nancy! Nancy!” we hear, urgently from the sitting room. “No! Not that! I need the Zimmer. The Zimmer frame, there. The silver thing with the … the frame, Nancy, the frame! The bars, the rack, the frame thing, there.
There!”
His conversations with her have become thesaurus-like. “The Zimmer. Right there, right in front of you. The thing right in front of you, the big silver thing, the Zimmer. No! Not the biscuit tin!” He takes a sharp breath inward and bellows, “THE ZIMMER!” Nothing I say to Morris can make him understand that
Zimmer
is part of the English that’s become a foreign language to Nancy. She relies on cues now, cues and context, a “now you’re hot, now you’re cold again” kind of verbal directing, an impersonal in-car Sat Nav approach. He may as well use the word
zangle
.

Unfortunately, by the time I get Morris into the bathroom, Nancy has had enough of being yelled at, and is marching off in the other direction. I leave him standing, balancing precariously while I run after her, taking her hands in mine and imploring.

Her reaction is predictable.

“Why on earth should I help anybody? It’s got nothing to do with me.”

This is the crux of it. Nothing has anything to do with Nancy anymore. She floats free of connections to the world. Alzheimer’s has invaded her empathy and placed its flag.

“That’s your husband, though, Nancy,” I tell her.

“No, it is not. It most certainly isn’t.”

“Yes, it is. Yes. Yes. You have to come and give him a hand.”

“I never heard anything so ridiculous.”

“He needs help with the bathroom. And you are his wife. You need to go and help.”

I’m wasting my breath giving her the backstory. All she is listening to, responding to, is my authority over her, my determination that she should act. That alone will save the day. Her respect for my presumption of power is all that drives her acceptance of my orders.

Afterward she retreats to her bedroom, and that’s where I find her, sitting on the side of her single bed, hands in her lap, staring downward and utterly dejected. The conversation that we have now, the daily conversation about her living here with us, her family, and her forty-seven years of marriage, is becoming grindingly repetitive. As the saying (often attributed to Einstein) goes, the definition of madness is doing the same thing over and over again and expecting different results, and from that point of view my explaining things is a mad enterprise.

Except on one occasion. On that day, instead of staring at the floor, she turns to look at me as I come in.

“I’m so glad it’s you,” she says with feeling.

“What’s up, Nancy? What’s up, dear?” I ask, sitting by her. “It was only poor Morris having to go to the toilet. He has to go to the toilet every day in the afternoon and every day you help him. It isn’t worth getting this upset about.”

She fumbles with a paper handkerchief, twisting and untwisting it.

“I don’t understand it,” she says, looking into my face, her eyes wet with tears.

“What don’t you understand?”

“I don’t understand at all what is going on here.”

I put my arm round her shoulders. She rests her head on my shoulder and cries, abjectly and with abandon.

“None of it makes sense,” she says when she’s able to talk. “What’s happening here? How did I get here? What’s happening? Please. Please.”

What will validation do for us now? There’s no cozy pretend world to slip into, averting our eyes from the present, taking refuge in dementia-fantasy, stepping through into dementia-time. What else is there to tell her but the truth? If it were me, that’s what I’d want.

“Here’s the thing,” I tell her. “You have a condition. Your memory doesn’t work properly. You don’t remember things. That might seem like something quite trivial but, actually, it undermines your whole life. It means that you don’t really know who you are.”

She snuffles through the handkerchief and tells me her maiden name.

“That used to be your name, but when you were about thirty, a little over thirty, you got engaged to a nice chap called Morris. You got married to him and you adopted two babies.”

“But I don’t remember that. I don’t remember any of it,” she says.

“That’s because you have this illness and …”

“I am not ill. I am absolutely fine.”

“You have a condition that lots of old people get. You’re in great health otherwise, fit as a fiddle, but your memory is almost gone. Lots of old people get it.”

“Am I old?”

“You’re seventy-nine. Nearly eighty.”

“Am I? Am I? I’m not. I’m not eighty. Am I?”

“Yes. Nearly.”

“Oh my god. That’s right, is it. I’m eighty.” She laughs nervously. I consider taking her to the mirror but then think better of it.

“Yes. Do you remember living in Edinburgh?”

“That’s where I live. Edinburgh.”

“Do you remember the apartment by the canal? Feeding the moorhens and the swans with bags of bread?”

“No. I don’t remember that.”

“Do you remember going to work, your little car, your rack of navy blue suits and shirts? Doing your nails every night?”

“No. Not really.”

“Do you remember the children? Getting the children, the babies?”

“No. No.”

She looks at me as if hopeful that the two of us might be in this mess together.

“That was forty years ago, more. You’re retired now and you live with us. With your son and his family. Morris is here, too.”

“Is he?”

“Yes. He’s the man sitting through there.”

“Can I see him? I’ve been wondering where he was.” She starts to cry again.

“Come on. Quickly. Come and see him and give him a kiss.”

We go through the kitchen and up the step, through the second door. When she sees him, Nancy goes into reverse, trampling my feet.

“No! No, no. You’re wrong. That isn’t Morris.”

“Of course I’m Morris,” Morris says.

Nancy turns to me. “That. Is not. Morris.”

“Yes, it is. That’s Morris. He’s got old, just like you. And he’s disabled. His legs don’t work, remember?”

“You’re all mad. You’re all mistaken. That isn’t Morris. You think I don’t know who Morris is? Well, I do and that isn’t him.”

All this is horribly upsetting for Morris, and his confidante has been counseling him at length in the mornings. The rejection is hard for him to bear. Nancy seems so hard-hearted, so impermeable suddenly. Morris tries to talk her round, to jostle her memory, insisting on the truth.

“But darlin’! It’s me! You must know me! You must!”

“I most certainly do not. You’re all liars.”

“Nancy, please. Please don’t say you don’t know me. Please.”

She goes and sits on the edge of her bed for hours and hours, refusing to eat or drink, sitting looking hopeless in her cold bedroom; me going in from time to time and trying to coax her to come back to the fire. Sometimes I find her in bed fully clothed, the duvet pulled up over her mouth, her shoes sticking out the other end, flat on her back and deeply asleep. Sleep is good. Sleep is her friend. The event is wiped clean away. As long as I don’t use the words
Morris
or
husband
when I reintroduce her to her sitting room, things are fine for a while. If only Morris could resist asserting himself and conjuring up their shared history, things would stay calmer for longer, but he can’t.

The rages spill out of the sitting room. There begin to be rumblings from day centers. They cope well at the Tuesday one, where they are trained to deal with Alzheimer’s old folk and have others with dementia attending. Dementia’s meat and drink to them. But the Thursday club, held in our own village, is a different matter altogether. It’s a social club for over-sixties. They are kind, good-hearted people, the people who run the Thursday club, and they try diversionary tactics first, before they call. If Nancy’s stroppy, somebody takes her out for a walk. They might go to the shop and get her an ice cream and go look at the boats in the harbor. If diversions don’t work she’s brought home early, delivered to the door, she and Morris alone in the bus, Morris embarrassed. “She’s not had too good a day today,” the helpers say. “Not too happy today.” Sometimes she comes home wearing borrowed underwear and I am full of admiration for the volunteers who deal so stoically with that.

In May, we experience the first of the major Thursday club upsets. It’s heralded by a phone call after lunch, from one of the helpers, who happens to be the mother of one of our doctors.

“I’m afraid Nancy’s in a terrible state,” she says. “Do I have your permission to take her to the surgery?”

“What on earth’s going on?”

“She’s … well, she’s just in meltdown, really. We can’t do anything with her and I, um, think she might need medical intervention.”

“You mean she’s having a tantrum, she’s upset? Is she being rude to people?”

“You might say.”

Everyone’s far too nice to be explicit. I have visions of Nancy going at the other members with a hail of china-saucer-fire, a volley of cutlery artillery, kicking old men in the groin and felling them with karate chops. Nancy is whisked off and given emergency sedation. They keep her there until it kicks in and then she is driven home, arriving monosyllabic and irritable. The doctor rings me later. “That was quite something,” she says. “I’ve never seen her like that before.” A frank conversation follows. Nancy is prescribed a mood-improving drug to add to the galantamine, the blood pressure drug, and the aspirin in the dosette box. Though we don’t give it to her beyond forty-eight hours, as its principal effect seems to be to tranquilize her in the daytime and make her more restless and agitated than usual at night.

Can I cope with this? Should I be trying? These are the questions that whirr in the brain at five in the morning when the long, gray summer days of the far north dawn early. We are already way out of our depth and we’ve been here for less than a year. How much longer will this go on? How much longer can I stand it?

Internally, I’m fervently apologetic to all those unknown, anonymous people I ever maligned for
dumping
. Dumping their parents in nursing homes, when they should have been clasping them to their familial bosoms, for better or worse. Movie grannies, with their crumpled-and-smoothed tissue-paper faces and gray plaits worn Heidi-like across their heads, and tea dresses and crochet cardigans—the kind of grannies who are pliant and hygienic, who dispense old-world wisdom to the children of the house, and are amusingly direct—they have a lot to answer for. Movie grannies don’t refuse point-blank to clean their teeth. They don’t yell obscenities at their grandchildren or accuse their daughter-in-law of stealing all their money or tell outsiders they’re being kept a prisoner. They never pull down their trousers and touch their toes and ask you if their bottoms are clean, or get sent home early from the Thursday club for disruption.