Off?
“Away south. Four times a year. It’s important. Otherwise you get unhappy. Cabin fever.”
I’ve lost all sense of where my feelings about caring for Nancy and Morris end and where those about living out here begin. The longer we’re here, the more the two things, the social isolation entailed in caregiving and the physical remoteness of the house, seem bound up in one another. Wordsworth’s exalted observation, “How exquisitely the individual Mind / … to the external World / Is fitted:—and how exquisitely, too— / … The external World is fitted to the Mind,” seems unintentionally close to taunting.
I go out into the landscape and see it all externalized: Nancy’s panic and my own resentment. The view is soaked in both varieties of unhappiness. I am beginning to think that I will love the peninsula only after I’ve left it. Flaubert had a similar relationship with Egypt, which bored and depressed him when he was there, at twenty-seven, but grew in his mind in all the years afterward, some forty years of ripening. The Egypt of memory, his idea of Egypt, followed him to the end. He was thinking of it, longing for it, just before his death. That’s probably what will happen here and it’s all down to elementals. The sea and sky, beach and cliff, meadow and wall and wood. These will prove irresistible, once memory has charge of them.
* * *
SCHOOL BREAKS UP and the summer holiday stretches lengthily ahead. On days when it’s grotty weather, bucketing rain, autumnally cold, we struggle to find things to do indoors that Nancy will tolerate. I invite her to come and do some art with me and the children at the kitchen table one afternoon.
“I can’t really do it. I’m terrible at drawing,” she tells me.
“Doesn’t matter. But would you like to have a go? Play with some color on the paper?”
“I’d love it. Just show me how.”
We sit down with a still life between us, a jug with flowers, a cup, a glass. Quietness descends with concentration. Nancy sits with an oil pastel in her fingers, looking uncertain.
“What do I do?”
“Just draw what you see. Or part of it. Or whatever you’d like to draw. Anything at all,” I say. “Or just make colors on the page.” She looks more uncertain. I’ve given her too many instructions. “Just use the crayon,” I tell her.
The rest of us have settled into a slow breathing rhythm, glancing from objects to paper and sketching in the shapes. Nancy looks at the jug of flowers, the glass, the cup, and at her paper, which is a large white sheet. The oil pastel makes contact at the left-hand side and she begins. What emerges is very like her signature, what her signature’s become, repeated with variations: a long unbroken series of what look like n’s and v’s interrupted by the softer contours of what might be m’s and the occasional punctuating y. It goes across the paper and up, forming a ribbon of letters about half an inch broad. All the time that she’s writing, she’s looking, as the rest of us do, toward the still life grouping and back at the paper, as if what she’s doing reflects what she sees. She talks to herself as she draws, murmuring along. “There, that’s up and away and here’s the next part, and there it goes, and it’s like that, and it’s like that again, that’s right.” The children maintain a tactful silence. “There,” Nancy says, putting her oil pastel down. “That’s it, I think.”
The American abstract artist Willem de Kooning (1904–1997) died of Alzheimer’s. His late work, his dementia art, is very different from the hectic, intricate colors and anxiety of the art of his prime. It’s much simplified, has curving open lines (lines dominate), allows generously for white space, and fills in the shapes created by intersections with color. It’s as if Jackson Pollock turned into Mondrian. In a series of huge canvases the white field is interrupted by curling tendrils, “ribbon paintings” that tangle their ribbons together, and more than one critic has said, rather tactlessly, that they resemble the tangling of tau protein in the Alzheimer’s brain. There had been symptoms as early as 1980, when the output is visibly taking on its dementia-period look. In that same year a friend reported that de Kooning, formerly a voracious eater-up of books, had given up reading entirely. Instead he painted and drew all day long obsessively. He gave up preparatory drawing in 1983 and used old drawings as the basis for compositions. He was extraordinarily productive: 340 paintings were produced in the 1980s alone.
There’s been much debate about whether de Kooning’s 1980s work is properly art or not. Some critics have raised issues of intention. Is the demented de Kooning still essentially himself, still giving of the same self that made his pre-eighties work so valuable? (Be in no confusion. This is a question about value. About money. His canvases sell for many millions of dollars.) There needs demonstrably to be an artist in control of his material, especially in the modern art market. In terms of value (monetary), the artist’s brand is more important than the material. The self that is implied by the work, that is sold in the selling of the work, has outstripped the power of the work itself. In the age of Damien Hirst and Tracey Emin it’s the artist that’s the artifact. The artwork is secondary.
De Kooning wasn’t diagnosed until 1989. In that same year, another friend reported that though he remained physically robust, affable, appeared to recognize people, and was still painting, when asked questions he’d give answers that were utterly unintelligible. Images remained with him but word and meaning were lost. He gave up painting in 1990. What would the art world have thought about that final decade if de Kooning had died undiagnosed? Mightn’t there have been a rather different tone to the discussion, talk of an old man’s retrospection, his sense of peace and optimism? Funny you should mention that, for lo and behold, reevaluation can take us there. The late works are beginning to be exhibited and written about as complex marvels, and in this spirit of reassessment de Kooning’s dementia is given quotation marks and spoken of as irrelevant. There is plenty of evidence that he was a happier man in these brief years, having recovered from the alcoholism that precipitated a breakdown in 1980 and seemed to bring Alzheimer’s on.
Nancy begins to pick on the dogs. Perhaps it’s a pecking order thing, and this is her only remaining outlet for the exercise of authority. Asked if she’d like the dogs in her sitting room, Nancy will always claim that she does, warmly and with apparent sincerity. The dogs have spent a lot of time in the in-laws’ room this year. Nancy asks them in, blocks off their exits and bosses them about. The terrier prefers to be by the fire but Paddy goes and sits by Nancy’s feet, enjoying having his ears fiddled with, tolerant about the ranting. They get biscuits, they get sandwiches, are bemusedly offered orange peel, and they get told what Nancy calls stories. That was the case until recently at least. Now, though, they’re unwelcome. Doors open and dogs are evicted.
“Out! Out! You’re a bad dog. You don’t deserve to be in here. Off you go you little bastard. Away with you, you bad dog.”
Paddy and Sparky are untroubled by “bastard” but they know what “bad dog” means and are suffering intermittent crises of self-esteem, slinking out with their ears held flat and tails pulled in tight.
A fortnight of summer respite looms and the care manager is preparing a dossier, again, on Morris and Nancy. Chris, in consultant mode, gives her the full consultation, though I’m not convinced that the comprehensiveness of his reports is appreciated. I join in with anecdotal examples and occasionally quite daring moments of honest noncopingness, though I don’t like myself much for doing this. The care manager doesn’t respond emotionally to anything we have to say. She is a highly trained professional, unflappable, has no doubt heard it all before, but we are new to the business of dealing with social workers and find her stoicism unsettling. Well, I do. And I find I might be exaggerating the problems slightly, in order to get a rise out of her. (It doesn’t work. You could say to her, “Nancy is eating dog poop now,” and she’d say, “Is she? And how’s that impacting on the rest of you?” She is unshockable.) We’re listened to with sympathy but very little is written down. She’s a conduit of the
system, and the system is only after one thing: the facts of the matter, and translating these into a score on a sort of geriatric Richter scale. The assessment is printed up and returned to us for checking. It amounts to ticked boxes, mapping what’s possible and not in terms of their physical and mental status.
The assessment has a dual purpose: It will go to the bed allocation committee (we’re still trying to get onto the waiting list for a nursing home) and to the home where residential respite is being offered. Because it’s also for the respite home, the report strives to be positive where possible. The temptation to minimize Nancy’s problems so that a home without dementia facilities will take her is irresistible. We’ve been warned that the residential care waiting list is long, two years long or more, and the situation is worsening. I know I won’t last another two years without cracking. So it’s important that this assessment is frank. Can this assessment, the one assessment, do both jobs? No. It’s a bit like being self-employed and preparing one set of annual accounts. These are rounded down as much as possible for the tax man (small income, please don’t bill me). But they also need to be bigged up for the mortgage company (sizable income, we can afford the house). Which way to jump? A happy medium is best in most things, but possibly not in the case of social care assessments. In the case of social care assessments the report is left dangling, nowhere, compromised, full of euphemisms. Reading over the report is a disheartening business because it bears very little relation to the reality of all our lives.
Morris is to be in the seaside home again, and Nancy is to go into the town home. Then Nancy loses her place in the town home, thanks to bed blocking, which happens when there are no new beds available because patients who have nowhere else to go continue to occupy a spot for days or weeks (or in some cases years). The care manager is frank about the problems. Sometimes people don’t go home again. Sometimes families refuse to take them back. We’ve been asked to sign a statement pledging to collect Nancy on the agreed date. The care manager says she’s hoping she’s got Nancy into the same home as Morris. Hoping. The stumbling block is that Morris’s home has no Alzheimer’s unit. Luckily the compromised report does the trick. At the time, a week before our holiday is very nearly canceled, this seems like the most important thing. We can go. And we do, though expecting, even at the gate to the aircraft, an announcement over the loudspeaker calling us back to duty. Would the woman who’s abandoned her mother-in-law please come to the information desk.…
Reading up on neurology on holiday, I find that the buzzword in brain talk is plasticity. The brain can be molded, reshaped, even in adult life; it responds to demands made on it. An experiment done with adults taught intensively to play the piano, from scratch, who were then brain-scanned, showed that their motor cortex had expanded significantly to cope with the workload. Not only that, it was commandeering neurons in neighboring zones to help with the job of learning and playing the piece in question. Cabdrivers in England doing “the Knowledge,” which involves learning the entire driving map of London, have been shown to have enlarged hippocampi.
Brains that are damaged try to compensate for their losses. They set up connections elsewhere, get adjacent areas to set up lost functions, march in to other bits and clear the desk and lay down the law. It’s a situation rather like that of soldiers interrupted in their task by a higher ranking officer: “Yes, I know you’re supposed to be in North Africa but, actually, we need to move you into Crete. No arguments!” (Groans in background.) “There’s a war on and we need to pull together, be a bit adaptable.” A damaged brain is a war zone and its efforts to keep pushing on, delegating jobs to other areas, opening up and staffing new fronts, appear nothing short of heroic.
Size isn’t everything. It’s wiring that matters, connections, pathways. The wiring process is called myelinization. Myelin is the “white matter” that forms the insulating sheaths that coat the stems of the axons and ensure the signals are full strength when they’re emitted from the end. Without insulation there would be seepage and slowness and incompleteness. It’s a slow and steady process, and has its own sequence. Section by section, parts of the brain are brought online by being myelinized and connected. Motor functions are first in the infant human (we hold our heads up), then touch, better vision and hearing, and language skills. The frontal lobes (the executive self) and the memory-forming hippocampus are the last to be brought onboard, beginning at about three, when most people’s earliest memories commence. Frontal lobe evolution is still taking place in teenagers. By the end of the teen years, the pruned neuronal forest has its myelinization completed.
One hot potato—hotly fought over—is the question of when we come to consciousness. The answer seems to be that consciousness grows as we grow, and that the experience of being alive is what makes us more and more conscious. Thus is consciousness linked inextricably with memory, not just in the process of knowing and doing, but knowing that we know and have done. Once we’re on the move and encountering the world, our consciousness grows rapidly, until at about the age of three we’re fully conscious beings. As Nietzsche wrote, “Only then, through the power of using the past for living and making history out of what has happened, does a person first become a person.”
The reason I’m telling you all this is that Alzheimer’s reverses the processes of turning from baby to toddler to child to adult in a way that’s almost pointed. Almost uncanny. In Alzheimer’s there’s a gradual loss of intellectual ability, stage by stage in grotesque mimicry. There’s a last-in-first-out kind of logic to it. The two “adult-making” brain zones, last to develop in children, the hippocampus and frontal lobe, are decimated first, the basic motor functions last. The memory goes, the memories that form the context for all our adult judgments, our own hard-won experience of what’s right and what’s good, what works and what doesn’t, what we like and don’t, what’s safe and dangerous. The self that debates these things, that uses memory as an intellectual tool, as a consequence is pared away. We’re returned to a second childhood, one jammed in reverse gear. The intellectual capacity of the teen is lost, and then that of the primary school child, and we are returned to toddler-dom. Toddler milestones go last. The power to govern oneself, to dress, go to the bathroom, manage our own eating, the things all learned and perfected then, begin to falter and disappear. Finally the Alzheimer’s sufferer, should she live long enough, is returned to a state of infancy and to incontinence. Language and recognition of language, then the infant powers of walking, bending, grasping; the ability to sit up, to lift the head and to smile, all these are lost. Advanced Alzheimer’s cases resemble newborns in their total dependence on others.
Chapter 23
We live in the mind, in ideas, fragments. We no longer drink in the wild outer music of the streets.
—HENRY MILLER
NOTHING IS HARDER THAN COMING HOME FROM HOLIDAY. Having undergone the serene psychic rebooting that comes about, mysteriously, by means of daily immersion in jade green water, the return to the house and its duties is shockingly difficult. The sense of dread starts at the airport. By the time we get in the car I am properly nervous. So much of coping is contained in its being got on with, prompted by adrenaline, habitual and unconsidered. It isn’t always helpful to be allowed to step away and see the big picture. The hawk’s-eye view, hovering above the landscape, is likely to induce an abrupt case of vertigo. Now, with Aegean salt still crystallizing on my skin, driving north through a cold gray summer, the return to the battlefield seems too difficult to contemplate. We have a day before the in-laws’ return from the nursing home and it’s spent feeling ill at ease. We’re all subdued and I’m barely talking. The unspoken questions come round in a loop. Can I do it, keep doing it? What if I can’t switch back? What if, perversely, relaxation and refreshment and that renewed sense of self I had on a Turkish veranda have been destructive after all? What if that transforming alchemy, the one brought on by aimless fiction reading and grit between my toes, has made me intransigent? Am I p
repared to give it all away again? It may not even be a question of that, of choosing. I fear I may have lost the knack. When Morris and Nancy’s bus trundles up the drive, it’s hard to assume a welcoming face. I smile but I’m close to revolt. Morris looks glad to be back, but doesn’t ask about our holiday. Nancy and I have one impulse in common, at least, one that’s instinctive but lacking in specifics. Within a half hour she’s telling Morris that she’s leaving.
“You can stay here if you want but I’m not staying here. I’m going home.”
“What are you talking about, you daft woman? This is your home.”
“You think I don’t know where my home is?”
“Yes! That’s what I think!”
AUGUST IS ALL about doors. All the doors must be locked as Nancy is intent on escape. Every morning she is asking, even before breakfast, when she can go home, if she can go out, if it’s time for her to leave yet; have they come for her, is her father coming, is it time to take the train, are the friends here yet? Morris shouts her down in his customary manner. That’s usually the spur to action.
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