The worst day with Nancy, the worst ever, comes unexpectedly as disasters tend to. One morning, when everybody is out of the house except Nancy and me—Morris has gone to the day hospital, the children are at school, and Chris is away—she summons me to her bedside with shouts. I can’t be sure of this, but it might be “Service!” that she’s shouting. When I open the door to her room, she’s red faced, her eyes blazing. It’s 9:00 A.M. and twenty minutes ago she was snoring. The twenty minutes have been spent profitably. She’s lying in bed wearing miscellaneous layers of clothes: a shirt and a pair of trousers next to her skin, followed by a bra (backward, clips across the bosom, cups flapping behind) and another pair of trousers, then underpants, then a cardigan worn round her waist like a skirt, another two cardigans worn properly, her bathrobe on top.
“Where have you been? What time do you call this, then? About bloody time, too,” she says to me.
It takes almost an hour to get her undressed and showered and redressed—she’s soiled and peed herself in bed—by which time she is in pugnacious form.
“Is that all you’ve got for me? It’s not very much, is it?” she says when I light the fire. “Is that all you can do?” when I put her television on. I ask if she’d like a cup of tea.
“Not likely, not if you’ve anything to do with it,” she says. “Get me somebody else. Go on! Go on! Fetch me the manager because I want to complain.”
“Look,” I say. “I do not work here. For your information. I live here. This is my house. You are my mother-in-law and that’s the only reason that I put up with you.”
She looks taken aback.
“Well,” she says with great theatricality, “I’ve never been so insulted—”
“Really? It’s early yet,” I shout, leaving the room and slamming the door.
I sit at the table, heart thumping. What am I doing? Why am I so angry? My hands are shaking.
I get up and open the door. Smiling like a maniac.
“Nancy! How lovely to see you!” I trill. Ordinarily, this tactic would work. Short-term memory loss can work to a caregiver’s advantage. But Nancy isn’t going to be bought off anything like that easily. This is a seriously bad day, heroic in the pantheon of Bad Days with Nancy. Ordinarily an immediate about-turn of mood on my part has an almost magical effect. Ordinarily she would grin at me and greet me back. “I’ve not seen you for so long! My friend! Come and see me, come and sit by me.” Patting her lap as if I were six. This would be a normal about-turn and all would be well. But today is different.
“I’ll just get your breakfast, back in a tick,” I say.
I take her a bowl of two Weetabix with milk and sugar and a piece of jammy toast for her tray, a glass of orange juice and cup of tea for her side table. She stares forward, rubbing her hands together. She takes her pills without comment, without resistance, still staring ahead and rubbing. I stand in front of her for a moment. She doesn’t seem to see me. I crouch down. “Nancy,” I say. “Here’s your cereal.” She is rubbing more urgently now and her eyes are wide. I put the spoon in and offer a little to her lips. I offer up the toast. She takes no notice.
Righto, then, I think. Just leave her be. Get your own breakfast. I eat some porridge and drink some coffee and read yesterday’s Times. Then I go back into her sitting room.
She’s sitting in her armchair with that same unseeing stare, hands rubbing rhythmically. Her lap tray is on the table by the window. Her orange juice has been drunk, and her tea, and her bowl is almost clean.
“That’s great, you managed it all this morning,” I say. Then my eye is caught by the fireplace. The Weetabix is on the hearth in a scraped milky heap. As I approach I see that the orange juice and tea have been poured onto the grate among the cinders, over a wigwam of toast. Nancy sits rubbing her hands quite frantically together, the pace increasing as I approach, her face streaked with crimson and blue, her expression defiant.
“What on earth have you done?” I say. “Why on earth did you do that?”
“What?”
“That. Look. Cereal all over the hearth.” I poke it. It’s setting into quite a useful Weetabix-based cement.
“I didn’t do that. It was that other woman. That bitch, the other woman.”
“Come over here,” I command.
“I told you, I didn’t do it,” a high wavery voice insists. “It’s nothing to do with me.”
“Come over here. Come here. Come here,” I say, attempting authority.
She gets up, sighing.
“Look,” I say. “You did that. You made that mess and I want you to clean it up.” I give her the coal shovel and brush.
“I’m not doing anything of the kind,” she says.
“Yes. You. Are,” I say.
“NO.”
“YES. YES YES YES.” I’m shrieking now. I’m losing it. Months and months of holding back and being reasonable have their price and here is their invoice.
“I am sick of you!” I yell. “I am so sick of you and looking after you and the endless bloody drudgery!”
Nancy roars. That’s the only word for it. She roars like a lion, like an old skinny lion with a mangy coat, left behind by the pride to starve. She’s dangerous. She’s a cranky old lion and still has teeth. She swings the shovel toward my head, and I make a reflex movement and it misses. She throws the shovel against the wall, where it breaks into two pieces and falls. She brandishes the brush and jabs forward with it at my chest. I grab it and we’re struggling. She lets go of the brush and has me by the upper arms with tight white fingers. She pushes suddenly and I fall backward. She’s shouting incoherently; I can’t make out the words. I barely hit the carpet before I’m up again and grabbing her. I have her by the upper arms now. Now it’s her turn to topple backward.
“Don’t you ever, EVER, get aggressive with me, you vicious old cow, or you will be in a nursing home before you can say tea bag!” I screech. I can’t catch my breath and it occurs to me that I’m going to have a heart attack and die. All I can think is, What if it had been one of the children? What if she’d taken a swing at Jack and the sharp edge had hit home, across his cheek, his ear, his eye?
By the time she falls, in graceful slow motion, onto her bottom on the carpet, still holding on to my arms, rolls onto her back, and is pushing herself upright again, one knee and one foot braced, I am screaming. I can’t remember what I say. I remember that I step backward and am holding on tight to the door handle. I don’t trust myself not to hit her. I’m yelling my head off. She’s standing up by the fireplace now—thank god, thank god that neither of us fell toward it: I have a flash, a vision of Nancy cracking her head on the hearth and going limp. She’s rubbing at her upper arms with both hands and saying, “Oh Christ, oh Christ.”
I slump onto the floor, my back against the door. I’m shaking violently. I can’t believe that I threatened the nursing home as a punishment. Elder abuse. Elder abuse is all I can think of. Strictly speaking it was self-defense—or retaliatory, at least, as she pushed me first—but even so. She has Alzheimer’s. What in hell am I doing?
The rest of the day is spent making ostentatious amends, singing songs, taking her on walks and garden visits, and brushing her hair and making her laugh, all upset forgotten. But when I put her to bed I see that she has bruises. Small, faint fingerprints encircle both arms. Mine are sore to the touch but are unmarked. She bruises easily, dramatically easily these days, but even so. These I inflicted. Aristotle in the Poetics describes how hamartia, a serious lapse of judgment, can all too easily lead to peripeteia, a calamitous reversal of fortune. The dark shadow of peripeteia is hanging over me. Guilt, in other words.
I pour myself a (large) glass of malt, noting idly that daytime drinking is becoming the norm, and administer a self-directed pep talk. There’s no point in rising, in engaging, in any of the negative energy because it’s only me who suffers. I give away my power, and I’m not going to do it again. Tomorrow, if the same happens, I will scrape the breakfast from t
he hearth and leave the room and go find other things to do. I’ll do it quietly and without comment. I will find a way of not minding. It’s not caregiving that’s exhausting, but minding. It’s minding that will make me ill.
I get it all out of my system in the classic modern way. I write e-mails. How could Weetabix lead to violence? In the calm of the aftermath, in cold words on the screen, it’s hard to say. Pauline, a good friend, replies almost immediately. “Course it’s not the breakfast cereal. It’s the incessant drip drip drip, the relentlessness of it. Not surprising that you should crack. She’s okay, I take it, and blessed with goldfish memory, so that’ll be that as far as she is concerned—but dear god, this is real lulu for you. You still sound pretty shaken up. I wish you better things for tomorrow. Poor you. Poor battered soul.”
It occurs to me to worry that the aides will see those faint amulets of bruises and will imagine that they know the truth. It isn’t the first time I’ve worried about what people might think. Nancy is constantly in the wars, walking into doors and tables, tripping over steps, falling out of bed and blackening her eye; do the paid caregivers ever mention the bruising that ensues to the social work department? I launch an Internet hunt on the question of caregiver abuse, and the words in the search box bring up other, unexpected results. Abuse of caregivers, and not just by them. Here’s a dementia victim, a husband who killed his caregiver wife with a hammer. Another woman, assaulted by her Alzheimer’s husband, who declares herself afraid of him, describing him as “cunning, nasty, aggressive, menacing.” On the Web pages I glance over, though, these stories are outnumbered by attacks by caregivers upon the demented. Most of them detail a “snap” moment. Most appear to be about male caregivers attacking wives. Some of these have been dubbed mercy killings: a wife strangled by a husband who said he couldn’t any longer bear her to suffer, another with her throat cut. More often, though, the attacks are attributed to rage. Faced with an impossible situation, people can fail in a dramatic manner to cope. Here’s a man who smothered his wife because she wouldn’t stop taunting him, in her demented, perseverating way. Another who tied up and gagged his wife after she’d kept him awake for days and nights on end roaring and shouting; she died. All elicit a mixture of horror and sympathy, the two vying feebly for precedence.
I read wider and come across the Greek myth of Eos and Tithonus. Eos, goddess of the dawn, falls for Tithonus, a hunky Trojan prince. She asks Zeus to grant him immortality, and he does. But she neglects to ask for immortal youth. Tithonus gets old at the usual rate and then keeps on getting older. He becomes senile, and stays that way for eternity. Eos, driven to distraction, locks him up in a room. In some accounts she turns him into a grasshopper.
Ralph Waldo Emerson wrote, “Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely.” This is good advice, though he also wrote, more pertinently, “Sometimes a scream is better than a thesis.”
Chapter 22
Between the essence
And the descent
Falls the Shadow
—T. S. ELIOT
HER MIND IS OPAQUE NOW, HER MOODS IMPOSSIBLE to read. Does she know that, as Iris Murdoch put it, she’s “sailing into the dark”? Does she spare us this knowledge as a kindness, by speaking in metaphors?
“I want to go home,” she says over and over, and she doesn’t mean to the bungalow we rescued them from, that lonely suburban isolation, the washing piling up, tea made from the hot tap and packets of biscuits for lunch. She means home to her old self. She’s aware that she’s lost her somehow, the woman who was a company secretary, with long painted nails and a wardrobe full of blue jackets, who made raspberry jam every summer, who knitted exquisite baby clothes for each of the children. She knows, but she can’t quite put her finger on it. There are days when the delusions are full throttle. In the throes of the hospital one, she has begged me for medicine for the dying patient in the next bed, all the time standing in her nightdress in the hall.
THE SUBLIME SEEMS of no use to me now, in this dark time of bright sunlight. I go out into it desperate for something good, for a taste of the Epic, for help: hoping to encounter something even mildly similar to Wordsworth’s “spots of time / That with distinct pre-eminence retain / A renovating virtue,” but come back feeling far worse. I can relate, at the least, to his pre-visionary moments.
O’er my thoughts
There hung a darkness, call it solitude
Or blank desertion. No familiar shapes
Remained, no pleasant images of trees,
Of sea or sky, no colours of green fields;
But huge and mighty forms, that do not live
Like living men, moved slowly through the mind
By day, and were a trouble to my dreams.
On bad Nancy days, the really bad days, the beauty out there seems tainted, all of it, by her animosity, which begins to seem like a misconceived fight against disease, against the lights going out, like a misdirected energy in her struggle to emerge from the dark. The anti-Sublime, purposelessly and destructively ruminative, reveals a landscape full of death. Death we think trivial. A broken cat in a ditch. A seagull neatly bisected on the side of the road. A baby seal dead on the beach, and then a dolphin, part eaten before it was washed ashore. I begin to feel an overwhelming, disproportionate pity for the sheep and the bullocks that watch me from their pasture as I pass. It’s all suffering and cruelty out there, I think, stomping along the beach in a summer dress and raincoat and Wellies; it’s cruelty disguised by landscape, by our fetish for views. I blame Wordsworth for that. I come across the archconservative Joseph de Maistre—a man named by philosopher Isaiah Berlin as one of the six Enlightenment enemies of liberty. “In the whole vast dome of living nature,” de Maistre wrote, “there reigns an open violence, a kind of prescriptive fury, which arms all the creatures in their common doom; as soon as you leave the inanimate kingdom you find the decree of violent death inscribed on the very frontiers of life.” Unsurprisingly, this doesn’t help much.
I read that Charles Baudelaire said that de Maistre taught him how to think, and find this quotation from the poet: “We are weighed down, every moment, by the conception and the sensation of Time. And there are but two means of escaping and forgetting this nightmare: pleasure and work. Pleasure consumes us. Work strengthens us. Let us choose.” Yes, I think, that’s so true; work is all that will keep me afloat. I must work and make everything else secondary. Though it’s slightly disheartening to discover that Baudelaire died at forty-six.
I dip in and out of books, following dementia trails like snail tracks across the paper, but seem unable to settle on anything new. I revisit John Bayley’s magnificent account of life with his wife, Iris Murdoch. Her demise seems to have illustrated the fact that though highly educated people are somewhat less likely to get Alzheimer’s, when they do succumb it tends to be an aggressive, fast-acting, fast-forward disease. Iris Murdoch’s Alzheimer’s first presented itself as trouble with finding words. It manifested itself in her last book, Jackson’s Dilemma (1995). Neurological study has found her vocabulary much reduced in it. She died in 1999, three years after diagnosis.
More care meetings, more assessments. The professionals come and settle themselves in chairs; they drink tea, they talk to us and make occasional notes. Conversations with Nancy are brief. Nancy is produced, and as is usual when faced with a social situation is utterly charming. Some emergency facility, buried deep, is mined and polished: that of the social bluffer.
“So. Can you tell me your date of birth?”
Nancy’s grinning. “I’ve absolutely no idea. But I can tell you it was a very long time ago; my memory’s terrible.”
The professionals are reassured. They give us quizzical looks. She’s really not at all bad. Crisis, what crisis?
Rita Hayworth (1918–1987), the Hollywood film star, developed Alzheimer’s
early. She was diagnosed formally in 1980 but had been ill five years, since the age of fifty-seven, and her daughter says in interviews that she had shown the first symptoms twenty years earlier. Alcoholism confused the issue, but reported agitation, hand rubbing, paranoia, mood swings, vacancy of the gaze, obsessive reorganizing of cupboards—this all sounds like Alzheimer’s. Her daughter reports that even quite late in the disease, her mother continued to turn on the charm with doctors. Asked a direct question like “Who’s the president?” she’d switch into flirtation and change the subject. The performance was remarkable, it’s said; it was as if she was constantly auditioning. That sounds familiar. Nancy’s winning smile and stock of phrases dredged from the past are a form of doctor repellent.
JULY BRINGS A series of bed-and-breakfast food sensitives. They bring their own tea bags and ask for hot water at breakfast. They want to discuss what’s in the bread, the provenance of the bacon, and they have a raft of food aversions. Rhubarb? Sorry. Wrong sort of acids. Oops, no, I don’t do fungus. Is the coffee fair trade? Are the mushrooms organic? I’m a celiac, didn’t I mention? Do you have any gluten-free bread? And then, as plate goes down on table, Ahhh, sorry, but I can’t actually eat tomatoes, or anything that’s been in proximity to a tomato.
It’s warm some days, but the wind blows. The wind blows most days. It’s so much our default weather that the days when it stops are puzzling. The silence takes its time to penetrate the senses. Being here in quietness is a different experience. The landscape is different. The air hangs heavy over it and its shapes settle into quadrilaterals—broad stripes of sky and sea, thinner strips of garden and wall, layered, irregular blocks of headland—all of this replacing its customary dynamic wildness, the sea in ferment, clouds scudding, the sharp diagonals of trees blowing. An elderly neighbor I meet one chilly morning down on the road while dog walking (in the Barbour, in midsummer, with head-wrapped scarf in place and Wellies) tells me that she has decided she can’t face another peninsula winter and is moving down to Somerset. “Make sure you get off frequently, regularly; quarterly if you can manage it,” she told me. “You have to get off sometimes.”
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