Keeper: One House, Three Generations, and a Journey Into Alzheimer's (23 page)

“Oh?”

“We failed to get Nancy and Morris onto the waiting list again.”

“Oh, what? How come?”

“It’s bounced back from the bed allocation committee. I’m sorry. I was sure they’d get onto the list this time, but no.”

“But why?”

“It’s just the way it goes. There is a lot of competition. There aren’t enough beds.”

“But we’re not asking for a bed,” I say, more emotional than I would like. “We’re just asking to go on the list.”

“Can you tell us what criteria are applied in the decision-making process?” Chris asks.

“What happens is that they look at the assessment, and at other reports, and we talk to them, and they look at all the evidence, and then they make a decision. Once they’ve made it, there isn’t a lot we can do. Just put the application in again. Do a new assessment. Have another go. I realize this must be very disappointing, but we’ll keep plugging away for you.”

“What other reports?” Chris asks.

It transpires that our care manager had visited Nancy and Morris while they were last in respite. A conversation was had with Morris about the future. The care manager confirms this much but won’t comment. Can’t comment. Disclosure would be against the law. Nonetheless it seems pretty clear to Chris and me that Morris, whether intentionally or not, has ambushed Nancy’s route onto the residential waiting list this year. It’s our guess that he’s done this by taking advantage of our absence to insist that she’s no trouble at home.

“I thought this may be of interest,” the care manager says, holding out a large brown envelope. Inside there’s a glossy brochure for a swanky residential community, one that’s geared to active retirement, Florida style. Everybody owns their own property within its walls and pays annual premiums to fund the social life, the golf, the recreational facilities. Chris and I look at this prospectus when the social workers have gone and are rendered speechless. They can’t really think, can they, that this clinically depressed, poorly wheelchair-bound old man and his demented, aggressive wife would fit in here, into this tea-dancing, bowls-and-bridge-playing culture? Have they been here, really been present, the social workers, at these quarterly meetings? Have they been listening to us at all?

Nancy, meanwhile, has taken to carrying her turds around the house. She no longer recognizes them. She carries them in her hands and brings them to us. “I found this and I don’t know what to do with it” or “Somebody put this thing in my underpants and I don’t know who it was but when I find them there’ll be words, I can tell you that.” She’s begun using her bedside chair as a toilet in the night.

All of which has a curious effect. I am becoming squeamish about dealing with the B and B guests, about cleaning their bathrooms and de-hairing the plughole and changing their linens. I find, in my demoralized state, that I am beginning to resent the poor holidaymakers and their ordinary holidaymaking habits. Their leaving jammy knives on the tablecloth, coffee rings on the bedside table, and sticky kitchen refuse in the raffia wastebasket. It’s too like dementia, this behavior, this not knowing what’s appropriate. I’m not related to them, these paying guests. I have no burden, no duty, I don’t have to be tolerant. I fume at their flushed, toilet-blocking sanitary towels, at novels that have had their spines bent; rage about books that go missing because somebody “inadvertently” packed something plucked from our library, a £20 full-color guidebook the same weight as a brick. Muddy footprints on a pale carpet provoke immoderate tutting. I bridle, not always silently, at luggage dragged along corridors, against newly painted walls and off the dressing table, leaving characteristic black smears.

The promised Indian summer doesn’t materialize and the weather is gray and sullen with a stiff breeze. We wrap up and go out on the boat, leaving Morris and Nancy locked in the house. It’s the only way we can go out on our own at the weekend, just the five of us, since our private care hours have shrunk to the minimum. It’s also a complete no-no, leaving them alone and locked in, something I’d guessed even before the phone call, the caller tipped off by one of our aides. Locking in is unacceptable. What about the fire risk? It’s a mustn’t in the lexicon of don’ts that surround geriatric care.

“But what if I can’t find a sitter?” I ask.

“Well, it’s obvious, isn’t it?” the voice on the phone says. “You’ll have to stay at home.”

We decide that we’ll fish for mackerel but have no clear idea how to do it. We make fishing lines out of string hanging from twigs plucked from the wood. We can’t buy hooks in the village, so we have to settle for safety pins, which are difficult to fix. The bacon won’t stay on the pins. We go out for two hours and catch nothing. Bacon doesn’t seem to be very desirable to ocean life. Or perhaps there’s just nothing there, the sea a vast empty bowl. That has become my suspicion.

Our assigned October respite week is canceled, and this time our begging falls on deaf ears: There’s no money available, not enough staff, and that’s that. It means there’ll be no half-term Turkish trip. I put my bucking bronco up for sale and buy a horse unseen on the Internet. He arrives in a borrowed lorry late at night, huge and brown and quivering with alarm.

Chapter 25

World is crazier and more of it than we think,
Incorrigibly plural. I peel and portion
A tangerine and spit the pips and feel
The drunkenness of things being various
.

—L
OUIS
M
AC
N
EICE

I
AM LOSING IT.
L
OSING MY GRIP.
T
HE THINGS THAT ARE
various are spinning out of control. One afternoon in October, as I’m sitting in the drawing room in my pajamas, working hopelessly but with energy on the fiction project, surrounded by dogs and dog hair, toast rinds, watermarked coffee cups and old newspapers, the doorbell rings out. I decide to ignore it. Then it rings again. I fling the laptop aside on the sofa and go to the conservatory door, muttering loudly about bloody visitors.

Two people stand there, unmistakably American. A shiny rented Peugeot sits parked in the B and B spot. Light dawns. And there seems no other option but to respond with a sharp expletive.

“I’m sorry. I’m so sorry,” I say, opening the door. “And sorry about swearing. I completely forgot you were coming.”

Chris keeps them talking in the hall until I can tidy the drawing room. Then he keeps them talking in the drawing room while I hurtle round the apartment.

We spend that weekend moving a woodpile out of the old stable. The woodpile fills it floor to ceiling. People here are hoarders, particularly of anything that will burn, as trees are so few and stunted, and this pile amounts to the accretions of an era: wormy limbs of furniture, old sash windows, planks, logs, twigs picked up for kindling that are brittle and silvered with age, rotted-out joists, wartime ships’ boxes with faded stenciled labels.

The respite booking system seems to have turned into a form of roulette. We’re awarded six days in October at the council-owned home. Then these days are canceled again because of staff shortages. Then, out of nowhere and at short notice, we’re awarded two and a half weeks at the privately owned Victorian home in the town. Though it’s a private home, the social work department (under pressure, no doubt, from relatives who have had their respites canceled) has made the decision to buy in extra placements. We hadn’t inquired about permanent care at the private home because the truth is we’d not wanted to use it. It doesn’t have Alzheimer’s provision, which is crucial, but in any case we’d heard unflattering reports. The private home is glad of the business and a representative begins chatting us up about permanent places even before the in-laws’ stay.

Two and a half weeks later there is unexpected news. It comes four hours after Morris and Nancy were due back and, weary of hovering at windows, we phone the home to see what’s happening. The reason for the delay, it transpires, is that Morris doesn’t want to leave. Chris goes off to see him. When Chris appears, Morris backtracks. He wants to go home, please. No, he doesn’t want to stay here. It’s hard to know whether this is properly considered decision making, or whether he feels in some misplaced way embarrassed for electing to be in residential care, as if he is rejecting us and our hospitality. These are the only two possibilities that occur to us at the time. Chris reminds his father that last night he had cried and begged to be allowed to stay (according to the home). All Morris will say now is that he feels quite the opposite. He wants his chair and his fire. He doesn’t want to stay here where everybody is old. It’s fixed that Morris and Nancy will come back the following day.

The chap from the home rings again, to reiterate that Morris has had a lovely stay and (until Chris turned up) was heartbroken at the prospect of leaving. He says he’ll talk to Morris again. Then he rings back and we have almost the identical conversation, word for word. Morris is adamant he’s coming home and does, with Nancy in tow looking baffled. The chap rings to see if they’re happy to be back. Then he rings the following day to advise me that the twin room is still available, but that they can’t hold it for long. I tell him not to hold it. I don’t think Morris will change his mind. He rings the day after, and the day after that. Finally, I’m short with him and he stops calling.

“He’s a persistent character, isn’t he?” Chris says.

“Odd, how he keeps on calling,” I say.

“Makes you wonder just how keen Dad was on staying on permanently,” Chris says. “And whether the guy was trying to cover himself, in his insisting that it was all Morris’s idea.”

This is a shocking idea but rings true. It occurs to me that it was just business.

A
T HOME IT’S
business as usual. Morris tells one of the aides, on Nancy’s day out in town, that he doesn’t know how much longer he can go on; that he thinks he made a mistake, preventing her going into care. He doesn’t say so to me, though, even when I’ve been tipped off and prompt him directly. Chris is barely communicating with his father by this point, so there’s no prospect of confidences arriving via that route.

When Nancy comes back from town she’s all smiles, but the peace is short-lived. Caitlin finds her heading out the door to the garden, asks her to come in, and is slapped hard. She suffers a volley of verbal abuse from her grandmother, which is overheard by Chris. He takes Nancy into the sitting room and sits her down and tells Morris how angry he is with her. Morris isn’t altogether impressed with this. He reacts rather like a mother at the door, when another mother comes to complain about her child being beaten up. He’s not quite sure how to react or whose side he’s on. But later, he seems surer. I’m in the kitchen preparing supper and overhear him reassuring Nancy.

“It’s just you and me, you know,” he says to her. “All we have is each other. It’s just you and me against the world. Do you believe me? Because there’s no one else. When push comes to shove, there’s no one else that matters to me but you.”

M
Y HEART IS
hardening. I can feel it hardening and contracting. I begin handling Nancy’s kitchen incursions differently. I turn the radio up louder and mouth, “Sorry, can’t hear!” If she comes into the kitchen in a rage I don’t say a word, just turn her round and open the door and eject her. If she comes back in, I have taken to shouting, “No!” just as the door opens and her angry red face appears. This is usually enough to prevent another annunciation for a while. I can hear her ranting about me next door, but she is in rant mode most of the time now anyway, so it doesn’t matter. None of it matters in the least, I say to myself, turning the radio up louder. The radio is on in the kitchen all day now, radio or the CD player. Hendrix turns out to be an excellent granny-repellent. Mozart brings Nancy in asking questions and Sinatra sparks something that has the tone of reminiscence, but is a random putting together of words and ideas, presented as urgently true.

This may sound harsh and uncaring. Maybe it is. But it comes after a long, long campaign. Take battle weariness into account. The only way of continuing with this is to disengage emotionally. That is what has happened here. Self-protective distance has kicked in. I no longer intercede unless it’s necessary—and even then only briefly, to call for a truce and move on. I no longer feel I have to wade in and referee. I no longer have that old burning impulse to convince Nancy of anything. I’ve spent a lot of time this year in trying to help Nancy to orient herself. However well intentioned, the information that she is ill was a mistake, misguided. She didn’t believe it; she saw it as a form of aggression, as another lie from a hornet’s nest of liars.

What I do now is keep my distance. I service their physical needs. I make sure they are warm enough, not too warm, that they have everything they want—newspapers, books, possessions, food. They are passive and need prompting. The television might need retuning. Phone calls may need to be made and shopping commissioned. Morris would never ask, but is grateful to be second-guessed.

What’s upsetting and awkward, what begins to be seriously upsetting and awkward, is that Nancy’s ranting about me to helpers and caregivers has become ubiquitous and vicious.
She’s only after the money; that’s the only reason she’s here. She steals things and has to be watched. She hits me. She shouts. She smells. She hates everyone and nobody’s her friend, nobody loves her. She’s thinks only ever of herself. She’s greedy. She eats all the food. She doesn’t feed me. She’s lazy. She makes me do the work. She’s nasty and cruel but nobody knows that, nobody guesses. Don’t be fooled, it’s all pretend. Somebody should tell the manager. Somebody should tell the police
.

They ignore her, let her rant on, which is considered the correct response, but that doesn’t seem the most important thing suddenly. Why is she the only one with rights? What about mine, not to be slandered and bullied? I want the aides so badly to intervene and tell her off. It would do my soul good to hear someone just once saying, “Don’t talk about your daughter-in-law like that; she looks after you and works hard, and it isn’t fair to call her names.” But nobody ever does. They don’t mention it to me, either. Which makes it more embarrassing. Chris gets told what she’s been saying about me, but never me, and it’s a distinction that seems close to pointed. Why wouldn’t they mention it to me directly? Is it because they don’t want to upset me? Or is it because it’s their judgment that there’s rarely smoke without fire? I get to wondering if Nancy’s allegations are mentioned in a file somewhere. My continuing and deepening depression, my evident detachment, these might lend a little weight and credence.

Old friends call them from time to time. Nancy’s friend Carol is on the phone again, and Nancy chats away to her as if it were fifteen years ago, her voice spookily youthful. Only the content is lacking. She has nothing to say for herself and what emerges is a string of clichés strung together. “She couldn’t put a name to me,” Carol says, “but she knows my voice and knows enough to treat me as a friend.” Carol’s an excellent antidote to the correctness of professionals, quite ebulliently partial. She says she’s come across “this bitch thing” before. Her mother was the same. “It’s not you, you know,” she says. “It’s hatred of your being young and able-bodied and running the household.”

Nancy’s brother Angus rings from Australia once every couple of months. Nancy takes the phone and starts off well. “I’m not too bad, thanks, plodding along, you know how it is, life is never simple, you better look before you leap, but you know, wasn’t that always the way?” Then she runs out of steam abruptly and hands the phone over to Morris midsentence. “Here, you take it. You do it.”

Our little sailing boat’s parked out in the bay in front of the house for a few days, halfway on its journey to its winter berth in the town marina. While it’s here, the weather turns wild and the boat is smashed against the pontoon. Her rudder is broken and Chris says he’ll have to organize a lifting crane. Before he can do this, the storm winds worsen and we wake to find, looking out the bedroom window one morning toward the mooring, that only the top of the mast is showing above the surface. The rest of her is wedged down tight, badly holed and her fin keel ripped off. Poor Chris is submerged in gloom. Mahler’s Fifth is on the CD player.

The weather turns apocalyptic, with floods, hail, schools closed, the horses cantering in hysterical circles in the road as we try to bring them up from pasture. It abates for a few days and we think it’s over, though the truth is that we’re at the eye of the storm. By Halloween wild gales are battering us, windows banging in their housings, the house creaking, sea in uproar. The house itself appears to undulate, rising and falling in queasy ocean-liner rhythm. Chris is out wrestling with the horse fencing—the electrified white tape is blown out of its posts and flies about. The wheelbarrow and henhouse are both blown across the garden, the hens roosting cluckily in the
Hebe
bush.

Nancy changes into her outdoor shoes and rattles the doors. She sits on her bed in two coats and a hat. She’s bolshie at the village day center. She gets brought home early one Thursday afternoon, having verbally abused the other members, having denounced Morris, having taken off her jewelry and thrown her full complement of rings across the floor. But that’s not all. It seems there has been an incident. The day center manager rings. “When Ruth tried to take her to the bathroom, she went for her,” she tells me.

“She tried to hit her?”

“Afraid so.”

“I think the time may have come to expel her from the center,” I say. “I know it’s harsh, but I don’t think you should be expected to put up with this. It must be spoiling everybody else’s day.”

“We’re okay, we manage fine most of the time,” she says. “We’ll continue as we are for now.”