Keeper: One House, Three Generations, and a Journey Into Alzheimer's (14 page)

Eventually she speaks.

“This is all there is,” she says to me, holding the coin in front of her face.

“There was only one,” I admit.

“What have you done with the rest of it?” she demands.

“Sorry?”

“My money. This is all I have left. This is all I have now. The rest has been stolen. You took it. You took it, you stole my money.”

Distraction is the only way out.

“Would you like some more toast?” I ask her brightly. “Because I’m jolly well going to have some. Toast with cherry jam and tea. What do you say?”

“Oooh, lovely. I like jam.”

She follows me into the kitchen. “How nice you are and how beautiful you are,” she says, running her hand over my neck.

When I put her to bed she stands with her arms outstretched, consenting to be undressed, accepts the flannel nightdress, gets into bed with her blue teddy, then bursts into tears.

“What on earth’s the matter now?”

“It’s just that you’re all, all so k-kind t-to m-me,” she blubbers, nose and eyes streaming. “You’re all so very kind and I don’t know what to d-do about it.”

“You don’t need to do anything. I hope you have a good night’s sleep.”

I put a gathered-up tissue over her nose and instruct, “Blow, please.” She blows.

“I have to reward you somehow,” she gushes. “I need to give you something. Some money. Would you like some money?” She reaches for the pound coin on the bedside table.

“No, thank you. Just go to sleep.” She’s sleeping within ten minutes.

Half an hour later she’s up again. I hear her coming, the slamming of doors, the raised old-lady inflection. A voice declaring, “I never heard anything so stupid in my life!”

I go out into the corridor. “Nancy?”

She’s holding a toilet roll. I take her to the bathroom. When I try to get her back into bed she takes a swing at me with her arm, her fist balled up. “Don’t you touch me. Don’t ever touch me again!” she screams.

That’s Saturday. Sunday is worse. Caitlin is slapped again, and Jack’s yelled at, and then I’m denounced for interfering. There is trouble from breakfast to bedtime, one thing after another. Caitlin spends most of the afternoon sobbing and Jack joins in. “W-why is G-granny so m-m-mean to us?” We have another (one in a series) of our conversations about Alzheimer’s.

“That’s not really your granny any longer,” I find myself saying. “Your granny is gone.” Harsh words, but they pour oil on the waters.

On Monday we make a telephone call to the health visitor. She turns up that same afternoon, with a colleague and a file full of paperwork, to talk about The Future. The great steam engine of the National Health Service is seen lurching from standstill to a creaking, groaning forward crawl. There are things nobody tells you unless you know the right questions to ask. I stare at the paperwork, the forms, the pen poised over them. At least drugs are free here, doctors and hospitals are free, day centers are free—aside from a small charge for tea and cake. I feel sorry for friends in the United States in a similar position, caught up in long tangles of red tape: the details of Medicare benefits, rights to Medicaid, drug bureaucracy, health insurance companies and their cunning opt-outs, and almost everything coming back to money, money, money. At least the health visitor (another free service in the United Kingdom) isn’t advising us to see a lawyer specializing in dementia in order to have our rights and our options explained at the outset. We will need to see the doctor, see the memory team, be assessed. We shrink from institutionalizing. Just three months ago we’d been dismissive about getting help, but now we’re greedy for information. We say that we’ve read somewhere that it was a good idea to get names down as soon as possible for residential care, a long way in advance. The health visitor doesn’t laugh, but her eyes register our naïveté. That’s not going to be available until things are much, much worse. And it isn’t going to be free. Instead, it’s going to become clear that care of the elderly is a business, and a highly profitable one at that.

Millie’s had good exam news, so we decide at the last minute to go to the Indian restaurant in the town to celebrate. There isn’t time to get Nancy in the bath and we’re aware, in the restaurant, that she’s rather grimy, her cardigan food spattered and the smell unmistakable. She doesn’t say anything all evening, just rubs her hands in her usual three-stage way, twiddles her hair, sings a bit. But then, for the first time ever, she has trouble with the cutlery. We put her fork in her hand but she can’t seem to coordinate it from plate to mouth, and abandons it for her knife. We cut her food up and take her knife away and give her the fork again. She puts it down and refuses to use it and eats curry with her fingers. We’ve ordered her a chicken korma, and it’s difficult to eat with the hands. We give her plenty of bread but she doesn’t seem able to scoop. She picks up rice a few grains at a time in her fingertips and stuffs it in; then pieces of saucy chicken, licking her fingers with pleasure. People stare.

T
HE GLOOM OF
February is eased by decorating, every room de-greened, and the weather is briefly in harmony, giving us a week of crisp and sunny weather, windless and almost balmy, days that end in stupendous sunsets, orange and red over a lilac-colored sea. Thousands and thousands of bulbs are sprouting in the wood, bouquets of white and purple crocuses under the trees, a carpet of snowdrops stretching between; the taller, stouter foliage surrounding them promising a field of daffodils preparing to show itself, and bluebells for later on.

Nancy has her first respite week at the nursing home, and the rest of us go to London. It’s our final weekend before Morris’s return, and we need to gird our loins. We are all in frisky, happy form, cavorting like horses let out of winter stabling onto spring grass. We can’t stop chattering. Morose tourists with heavy cameras look at us thoughtfully on the train.

Morris is brought home in an ambulance on the last day of the month. Preceding his arrival, the home care manager visits. She’s heard already that Morris is severely disabled and will need home support. He is weak and can’t walk at all, has trouble even taking a step, we confirm, and is unlikely to improve, though it’s hard to say the words. The home care manager takes us in hand. Over the few days before Morris returns, a steady stream of assessors, builders, physical therapists, and equipment specialists tramp in and out measuring, advising, talking gadgets. We’re advised that he’ll need a wet room and given consultation on where and how to construct it. Morris is equipped with an inflating and lifting bed, humming along on its electrical supply, a ramp for wheelchair access from bedroom to sitting room, toilet frames and urine bottles. I’m reminded of his and Nancy’s old family home, the row house, which had a handrail fixed onto the wall of the downstairs toilet, a relic of Nancy’s mother’s long-term stay in what had been their dining room. A Zimmer frame sits by his electric chair, for getting in and out, which I’m learning to call “transferring.” He can’t transfer alone.

There are gales, and heavy rain. But at least there are snowdrops in the wood. Our decorator, an ex–creel fisherman, goes diving in the sound and finds a treasure trove, the seabed littered with scallops. He brings me a fertilizer bag full, a gift. Chris spends a whole day shucking. We eat some of them cooked in garlic butter with pasta. We have some for breakfast. Then we freeze the rest for another day, a day when we’ll have visitors and can share our good fortune.

Chapter 15

Alas, must it ever be so?
Do we stand in our own light, wherever we go,
And fight our own shadows forever?

—E
DWARD
B
ULWER
-L
YTTON

I
T’S DOUBTFUL THAT
M
ORRIS WILL EVER WALK ANY BETTER
than this. He comes home with exercises the physical therapist gave him, a cardboard tube he’s supposed to manipulate with his legs, but he isn’t doing it and has no intention of bothering. Reminding him that he’s supposed to exercise constitutes nagging. “Don’t nag me,” he says. “I have a wife for that.” I look at Nancy, sitting looking blank in her chair, and raise an eyebrow.

“It’s not nagging,” I tell him. “It’s what you need to do to improve. Don’t you want to improve?”

“All right! All right, all right!” he snaps. I withdraw. But I can’t leave it at that. Somebody has to chivy him. So every day after breakfast I place the cardboard tube and the instruction sheet on his side table and pat it. “Here’s the thing for your exercises,” I say. “Yes, boss,” he says, not looking away from the television.

Boss is my new name. Nancy likes it. It makes her giggle when Morris calls me boss. It’s plain to her, you see, that I have a junior position in the household and that Morris is in charge. Men are always in charge. I get called boss every day. I only get called boss when I exceed my authority. Thus is it made clear that I exceed my authority a lot. I do it when I suggest that he eat more fruit and fewer biscuits. I do it when I suggest that he try to walk a few steps, or recommend that he call me before the fire has gone out or the tea’s soaked into the chair, or before his need for the bathroom is urgent. It seems that our relationship, mine and Morris’s, has entered a new phase. Perhaps it’s to do with having been nursed and unhappy in hospital for so many months. He has begun to see my role as caregiver as an attempt at power over the two of them, and has begun to resist.

We’d been looking forward to him coming home. We’d been counting on it stabilizing Nancy. But with Alzheimer’s there’s rarely any hope of going back a step. And actually it’s worse. Morris’s return has the opposite effect. She finds his sudden appearance in the chair next to hers, the bed next to hers, alarming. An enormous downward step is in the process of taking place. Something momentous. Not recognizing Morris.

“Who is that man?” she’ll ask me in a low and confidential tone, as we clear the breakfast things away.

“Man?”

“That one in there. The one sitting in there.” And then, as I go to look in the direction that she’s gesturing in, “Don’t look! He’ll see you.”

“That’s your husband.”

“Is it?”

“Yes.”

“Oh.”

It’s “oh” for now because she trusts me. She won’t trust me much longer and then her reaction will be different.

We have reached the apotheosis of forgetting. Morris the man, Morris the husband, and all the years and memories that Morris encapsulates. In 2004, the anterior cingulate was identified as the missing link in memory production, controlling the storage and retrieval of long-term memory. The area lights up in brain scans once memories the subject is engaging with are several months old. When the anterior cingulate, which is part of the wrap of functions around the limbic system, is damaged by dementia, its malfunction means that only parts of the long-term memory are accessible, and these bits can’t come together in a meaningful way. Perhaps, in terms of emotional impact, it’s worse to have parts than none at all. If the anterior cingulate is disabled entirely, the access to the past is completely blocked off.

It isn’t in Nancy’s case. Not yet. Instead it fluctuates like bad radio reception, going on and off station. It’s worse for Morris to have her memory of him come and go so seemingly arbitrarily. From minute to minute, he doesn’t know whether she knows him or not. He’s exhausted by the inconsistency. When she does know him, she’s loving, fussing over him, and getting onto his lap (getting onto his lap and crying). It’s as if she has missed him. When she doesn’t know him, the manner of her rejection chills the blood, and it’s Morris’s turn to weep.

Now that Morris is home, the television is on all day. He’s getting a bit deaf and the volume’s turned up high. Thus we all get to share in his televisual life, which kicks off with the confessional shows first thing in the morning, the accusations flying, and follows an itinerary that soaks up as many soaps and police and hospital dramas as can be managed. Their sitting room becomes a little self-contained universe of televisual strife: assault, adultery, divorce, neglect, crime, rip-roaring arguments: all these keep Nancy smiling and the rest of us depressed. (I’m with Groucho Marx when he said, or is said to have said, “I find television very educational—every time someone switches it on, I go into another room and read a book.”) A constant melodramatic state of crisis thrums under the door, seeping out and spreading its antilove around. Nancy likes it in there when the soaps are blaring. She sits and twiddles away at her hair with one finger and smiles. The rest of the house is too quiet, too harmonious for her. We bore her. She wants talking, talking, all the time talking; can no longer tolerate anyone reading, has to interrupt; comes and looms over people until they pay attention to her. I’m reminded of a particularly needy cat we had once that attacked opened newspapers. Though he didn’t go in much for existential angst.

Nancy’s care plan arrives in the post from the Tuesday day center. Two copies. We’re to read it, sign it, add any comments, send a copy back. “Nancy may try to put used toilet tissue paper up her sleeve,” it says. “In the interests of her dignity she has begun eating lunch with a caregiver in a separate room.” Nothing is said specifically about mood swings, nor about pinning the lunchtime helper’s hand to the table with a fork, so we are quietly encouraged.

Morris decides against resuming at the Thursday club and no longer leaves the house, but the trappings of a sort of a social life are the unpredicted benefit of having the home care team in. A lady comes in at 9:30
A.M.
to get him up, another at 8:30
P.M.
to get him to bed. The lead home care aide, the one usually on duty, is between generations, Morris’s and ours, and in the early days proves a useful bridge between Chris and his father. She shares Morris’s cynicism, his knee-jerk conservatism, enjoys his anecdotes, laughs at his jokes. And slowly, she becomes his confidante. This is the point at which things change. She and Morris have long and private conversations, while she’s getting him up and getting him to bed again. Getting him up and getting him to bed begin to take longer. She stops telling us what Morris thinks, though useful snippets are cast our way. We hear that he despairs of Nancy getting better. We hear that he doesn’t ever want to go to a day center again. We hear whether or not he’s enjoying the meals we cook for him. It’s the things we don’t hear about that intrigue us. And in time, this new relationship in the house becomes both a bridge and a wedge.

The phone starts ringing, now that Morris is home. Professionals on the line. We’re one of the plates the care profession has to keep spinning. People checking up on Morris, and also on me, who’s been flagged, perhaps, as most likely to crack. Something I have said in a low moment has been talked about, has been the subject of an e-mail, or has become a sentence in a file. There may be a blue Biro question mark by a note about my own mental health. The only outcome of this intuition, however, is a renewed determination on my part to clam up. I feel bad about this, about my concerted noncompliance. It’s their job, their jobs collectively, after all, to follow up on Morris and Nancy, to make sure they’re okay and that their caregivers are caring and coping. I feel bad about resenting their concern. I ought to be grateful. It’s churlish to be otherwise. But it’s difficult to convey just how little I like to talk about my problems with concerned professionals on the phone. I hate the phone, anyway, always have. I hate it ringing when I’m doing something else and people blithely expecting me to be ready to give considered answers to their questions. I’m not, in any case, a talker. The words in my head go from brain to fingertip, not from brain to tongue. I can’t do justice to myself, and especially not in these circumstances, when it’s
off the cuff
but also
on the record
, which is how these phone calls seem. Being caught on the hop makes it infinitely worse. I say the first thing that comes into my head, and this might very easily be untrue, unfair, something true or fair today but not tomorrow (caregiving is a mood-swinging business), irrelevant, repetitive, self-pitying. Quite often, increasingly often, it’s all of these things crammed triumphantly into one conversation. People ask me how things are. That’s generally the first sentence spoken. “It’s
X
here; how are things?” I can’t tell them I have no idea. I have to produce something. What I produce is entirely random. Quite often it’s blacker than is accurate, because I’m irritated by being interrupted and by being expected continually to give an account of the state of things. I don’t know how I am, how things are. I’m just doing this. I do it, over and over, every day. There isn’t any alternative, is there? Other than a nursing home. “So, have you talked to Morris about residential care lately?” the professionals ask. As if it’s like ordering coal.

There’s no room in the nursing homes, anyway. There are waiting lists. And it will cost a fortune, eroding their life savings away until the money’s all gone. How can we be responsible for the loss of their life savings? It’s not something anybody could enter into lightly. There’s only one private home in our county and it doesn’t have an Alzheimer’s unit. Nancy isn’t severe enough a case, nothing like severe enough, to be taken into council-sponsored care. That has been made very plain. She’ll have to be completely doolally, physically frail, incontinent, not eating, and have sawn off one of Jack’s limbs with a bread knife, before urgent action will be taken of that kind. The state of things is that I am lumbered, and am resentful about it, but resigned. That is how I am. But I don’t say that.

I say, “How am I? I’m okay. Functioning. But it’s hard work and getting harder.” That’s on a good day. On a good day, I’ll follow this up with the latest Nancy anecdotes and will tell them in such a way that we both end up laughing, my interlocutor and I. On a bad day, I’m impatient with the phone person and incapable of being funny about the anecdotes. I sound terrible. I’m aware of this, and I mind. I wish they’d stop phoning to sympathize because in this situation, pity isn’t any use, and an emotional phone conversation throws long shadows on the day. The worst of it is that nobody ever phones to sympathize in brief. The conversations go on for twenty, thirty minutes, forty. We go through it all again. Her behavior. Her condition. Her decline. Morris’s state of health and prognosis. His behavior. His condition. His decline. His interaction with Nancy, his desperate unhappy bullying. The effect that all the above are having on the family.

I become markedly less grateful for official concern as time goes on. I hit the ball back over the net with topspin. “Hello there, bad timing, unfortunately, just going out.” They ask if they can ring back. “Tell me what it is you want, if you like, but can you make it quick? I’m really busy.”

I interrupt them midstream. “Thanks for this, for phoning, but now I need to get on.” I invent things. “Can’t talk now, Nancy is in the bath.” “Nancy and I were just about to play badminton.” “Sorry to interrupt, but I see Nancy making off down the drive.” I start making my answers short, pointedly so. Eventually it’s open rebellion. “Look, can we not have any more meetings? Can you not call quite so often? I already have very little time to myself and having meetings isn’t what I need. Sympathy isn’t what I need. If you can suggest anything we can do to make Nancy less angry and Morris less depressed and me less tired, that’d be great. Otherwise, perhaps you could e-mail? E-mail’s better for me.”

P
EOPLE ARE OFFENDED
left, right, and center. They’re not accustomed to being headed off at the pass. Perhaps they categorize my unwillingness as indicative of neglect? Perhaps, in their training, their trained way of seeing the world, my being flippant is considered a marker of something. I don’t know. They must be accustomed to other sorts of people being caregivers, I decide. Perhaps they’re used to people who like this endless going over things. It must be seen as therapeutic, cathartic. It’s supposed to be bad to bottle things up, isn’t it, unhealthy? I, however, am of the opposite view. I don’t relate to the lanced-boil metaphor. I tend to think that a problem shared is a problem doubled. Or quadrupled. A problem shared, hereabouts, is generally a problem that’s gossiped about.

March brings its usual last blast of winter to blow away the spring. We find ourselves snowed in for almost a fortnight, transport canceled, schools closed, the world quiet in that uniquely quiet, snow-muffled way. We don’t get that much snow, but the little that falls is blown impressively into drifts sufficient to immobilize a bus, and subzero temperatures freeze the slush on the roads, and that brings the whole region to a halt. We can get no farther than the village shop. Potatoes, cabbage, frozen fish, bacon: these become, temporarily, a big part of the diet.

In late March I have a new project. I organize myself a whole other life. A house in Turkey. We’ve sold our ruin in Normandy that we bought to renovate and never will, and want spring and autumn sun. The project starts as a house in Bulgaria, as I have seen houses on eBay going for £8,000, though Bulgarian trawling ends in a cul-de-sac. It’s Greece we want but we can’t afford Greece. I go online across the water into Turkey, and find that a tiny cement house by the sea is possible at the £25,000 level. And so I spend two weeks doing nothing but chasing leads, drawing up a short list, pestering agents. The in-laws, Chris, and the children are kept at arm’s length. Dealing with the inevitable, inescapable day-to-day slog, unpaid and thankless—running the household, dealing with Morris’s mild but needling hostility, coping with Nancy’s bizarre and darkening world—all of that, I can deal with because round the corner, in laptop-land, life-changing things are afoot.