Alas, must it ever be so?
Do we stand in our own light, wherever we go,
And fight our own shadows forever?
—EDWARD BULWER-LYTTON
IT’S DOUBTFUL THAT MORRIS 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.”
PEOPLE 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.