12:30 A.M. Morris is quiet again, probably asleep. Nancy rants on undauntedly. At this point Chris might give her a spoonful of something prescribed to help her sleep, though we try to minimize its use because of the hangover that will follow. If she gets sleeping syrup, she’ll doze most of the following day and be awake all that night angry, which demands another dose, another day of dozing and another wakeful night, leading to more and larger dosages. So is it that a care facility syndrome is born.
In any case the sleeping syrup doesn’t always work. What she needs, I tell Chris, is rhino tranquilizer. We stand outside her door and whisper and stifle our giggles at the idea of a rifle with a tranquilizer dart. We’re not quite ourselves. Later, I look up sleep disturbance in dementia and find that melatonin levels in the pineal gland fall in Alzheimer’s sufferers, who as a result no longer take darkness as a cue. Melatonin can be given as drops, apparently, but you can’t buy it over the counter in Britain; caregivers on message boards get theirs from the United States. As Alzheimer’s progresses into the final dark phase there will be a complete turnaround, and sleeping will be the norm, as the disease goes further and deeper and cell damage is such that wakefulness can’t be supported. The brain is then so damaged that it demands unconsciousness in order to muster all its forces of repair.
1:00 A.M. Nancy’s monologues are sleepier, with more pauses. We go to bed, hopeful of rest. Most nights now there is another breakout, or a succession of them, typically at 2:00 A.M., 3:30, 5:15. Chris jumps out of bed and goes blurrily off, insisting I go back to sleep. I hear their two voices echoing up the stairway.
“No, Mother. You’re not going anywhere.”
“I’ll do as I please.”
“Be quiet, you’re waking the children.”
“I will not.”
But when he’s away working I have to get up and do the night shift. This is difficult. There’s a reason, other than for filial duty and husbandly kindness, that otherwise it’s always Chris who goes off to sort his mother out at night. Nancy has taken against me, me specifically. She’s dramatically less cooperative with me than with anyone. She sees me coming and bristles.
There’s been an abrupt switch around. I’ve gone from most favored to least. “And who the hell do you think you are?” she asks when I take her elbow and try to steer her bedward. “This has always been my house, do you hear, and I want you to leave RIGHT NOW.” She turns, her face set with hatred, cheeks reddened, mouth turned decisively down. “You, you are not worth anything, do you hear me? Nothing. You think you’re somebody, don’t you? You really think you’re somebody. Well, you’re not. You’re NOTHING. NOTHING. You’re not worth the shit on my shoe.”
The home aides are getting some of this treatment, too. Nancy wakes in a foul temper most days, and the appearance of the home care team, cheerily wishing her a good morning as they go to get Morris out of bed, is the trigger for ranting verbal abuse. “She’s a bit upset this morning,” the ladies say to me, looking rather shaken. “Not a happy bunny.” “Nancy’s been crying and upset and she’s set Morris off.” Morris is wheeled through with red eyes, a wet hankie.
“You know it’s just the Alzheimer’s talking, don’t you?” I say to him. “It isn’t you she’s having a go at. It’s just the disease speaking.”
“I know, dear,” he says, his voice cracking, “but that doesn’t make it easier to take.”
How hideous this is for him. How intolerable and cruel, to spend your seventies in this state (he’s three years Nancy’s junior), witnessing the death of your wife by slow degrees and having to deal with this protracted and ongoing grief, a pre-death bereavement spread over a decade. Not for nothing is Alzheimer’s known as the long good-bye. Other people in their seventies go traveling, have adventures. What’s worse, having Alzheimer’s or being handcuffed to it and forced to watch? If it is just the Alzheimer’s talking and Nancy is already gone, then Morris’s seems to me much the worse of the two fates.
Some mornings, Nancy gets in the way of his routine and one of the aides brings her out of the bedroom and chums her while Morris is dressing. I hear Nancy’s voice, monologuing away as if it were still 1:00 A.M., as if she’d not paused for breath. “And I say so but he doesn’t listen to me. He’s useless. He just sits there and won’t come home. And he won’t stand up to her. Oh no. The bitch has it all her own way. Yes. She says what goes and what doesn’t go. He won’t say a word. Not a word.” The aides don’t comment but I can see from their reactions that they know the bitch is me. They shut the kitchen door so I can’t hear. What they don’t know is that when they leave the house, even before their fingers have left the door handle, Nancy’s delivering her parting shot toward their receding footsteps. “She’s a terrible bitch, that one. Don’t let her in the house again. I’ll not have her in the house. Coming into my house and talking to my husband like he was hers. She should get her own husband.”
Husband is a word she uses only when cornered, these days. Husband is a word available only by means of the emergency generator, the same one that powers conversation with the health visitor. Husband is a concept dredged up under pressure. We’re all a threat, as she perceives us, all the other women who populate the house, to her marriage and her matriarchal rule. I come to realize that the days in which Morris has more protracted contact with the home caregivers, the days they hang about and are animated and make Morris laugh—those are Nancy’s worst days. She sits in her chair watching, and rubbing her hands, saying nothing until they are gone. Then she’ll be foul and ungovernable all morning. She’ll likely as not be foul all day.
THE QUARTERLY ASSESSMENT is due. We sit in the conservatory and take tea, as is habitual.
“I’m afraid I have bad news,” our care manager tells us.
“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 quart
erly 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.
—LOUIS MACNEICE
I AM LOSING IT. LOSING MY GRIP. THE 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.
AT 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, wh
ich 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.”
MY 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.
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