Keeper: One House, Three Generations, and a Journey Into Alzheimer's (21 page)

“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
.

—H
ENRY
M
ILLER

N
OTHING 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 prepared 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!”

A
UGUST 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.

Until the school holidays arrived, the outer doors were locked all day and the keys were left in them. When we arrived here, Nancy couldn’t manipulate a key. But now, apparently illogically, she can. She seems to have learned how, and retains the ability, day on day. She gets better and quicker at it, opens doors and is off. How, in someone lacking a functioning memory, is this possible? The answer may lie in the history of H.M., of whom we heard earlier, the epileptic research subject run down by a bike. He had his hippocampus removed and other bits of his brain modified, as a typically gung ho 1950s approach to defusing the extreme severity of his fits, and couldn’t remember things. But when scientists asked him to draw, to copy the image of a star, following its outline, and then do the exercise again and again and again in the days following, H. M.’s performance improved. He couldn’t ever remember, from one day to the next, that he’d seen the star before, but he got significantly better, progressively better, at drawing it. The answer lies in the cerebellum. The procedural memory appears to be able to learn, bypassing the conscious mind and the ordinary routes of memory. And this, I suppose, is what’s happening to Nancy.

So now, official policy is that the key is taken out of the lock and hung on a hook. She can’t manage to get the key off the hook and into the lock; she doesn’t identify it, hanging on its hook, as the key to the door. It’s the school holidays, however, and the children are constantly in and out of the house. Neighboring children are in and out of the house. There are bikes piled on the lawn, alien sneakers and sweaters in the boot room, strange strident voices on the stairs. And the doors are hardly ever locked.

Nancy’s escaping becomes a big part of our lives. It wouldn’t, of course, be an escape, if it weren’t imperative that somebody always be with her. How lovely it would be for us all if she could be left to saunter round the garden picking the tops off flowers and chewing random stalks of found rhubarb, shutting the hens in their house because they’ve been naughty, telling her troubles to horses. Alas, this isn’t possible. Thirty seconds after getting out of the door and into the world, anxiety descends. Some days we find her walking round the laundry green in ever diminishing circles, wailing; on other days, standing tightly, closely in to the elbow of a wall, chewing on her cardigan and paralyzed with fear. But then she starts leaving the garden. She begins to make a beeline for the road, charging down the driveway with whatever possessions she has judged vital to take home (cardigans, the address book, a singing toy kestrel I brought from the airport, the blue handbag) and out onto the lane, without pausing to look out for traffic. She is found one afternoon in our nearest neighbor’s garden, talking to workmen building his extension, asking them if they know where she lives. She is discovered on another afternoon lying on the road.

On this occasion she is found before we realize that she’s lost. Her habit of going to her room to be alone, two, three times a day, and the taking of lengthy afternoon naps: these are to blame for our not noticing. Morris doesn’t raise the alarm if she disappears anymore, assuming, like the rest of us, that that’s where she’s gone. A stranger ringing at the doorbell is the first alert in this instance. Are we missing an old lady, she wonders. There’s a white-haired old lady in a red cardigan lying on the road by the farm, and they’ve already called 999. We rush down there, two hundred yards down the lane toward the beach, and sure enough, there’s an ambulance, parked; two ambulance personnel crouched by a seated figure, freshly cloaked in a tartan rug; and three cars pulled into the verge, with concerned (nosy) locals, waiting to see what happens next. They assume she’s been run over, although statistics suggest not: Their three cars amount to 60 percent of the local traffic, from houses on the headland beyond us, and they’re intimately related to the drivers of the other two cars. If somebody had bopped Nancy, word would be out by now. As Douglas Adams, the author of
The Hitchhiker’s Guide to the Galaxy
, observed, “Nothing travels faster than the speed of light, with the possible exception of bad news, which obeys its own special laws.” The ambulance people are just about to whisk Nancy off to hospital, when we come running up. We have to explain that dementia makes her do this kind of thing. She has no apparent injuries and is determined about not going anywhere. We bring her home and keep an eye on her as promised. The first hint of illness, and she’s to be whisked off to the emergency room.

I bring her back into Morris’s orbit, the TV room, his occupied chair and her empty one, the afternoon movie in full flow, and tell Morris where we found her. Nancy interrupts me.

“That’s just a pack of lies and you know it.”

“Nancy. You were down on the road. Don’t you remember?”

“No.”

“You were lying on the road. The ambulance came along. They sat you up and put a blanket round you.”

“Lies. It’s all lies.”

“Look. You’ve got a scrape on the side of your hand. I’ll clean that up. I think you must have toppled off the sidewalk.”

“It’s a load of nonsense. I haven’t been anywhere. I’ve been here the whole time.”

The weather’s peculiar and the hens aren’t laying consistently. Some days there are five eggs, other days none. The trouble is that when both guest rooms are occupied, we need four eggs a day. On one particularly grim and windy morning, there are four Canadians to feed and no eggs at all: none in the fridge, all backups depleted. It’s too early for the shop. Before the guests appear downstairs, we nip off in the car to a neighbor’s roadside honesty box and are saved by the half dozen eggs sitting in it. It’s only later that afternoon, following Chris’s hunch, that we find a pile of fourteen eggs in the herbaceous border, and another pile of twenty-two among some brushwood on the lawn. I ask Nancy to help sort them, inventing a task I think she’ll enjoy. She crouches down in front of the hoard of twenty-two, sitting on her haunches, and talks her way through it. “Two piles,” I tell her. “Brown and white.” I start her off. “Brown in this pile, white in this. See?” She murmurs her assent. I clean the chickens out and watch, with horrified fascination, as Nancy fails to be able to do the task. She can’t seem to distinguish brown and white, can’t make two piles. The browns and whites are mixed up again. But she enjoys handling the eggs, so delicately and gently, in cupped hands, and seems absorbed in her task.

A
UGUST BRINGS
N
ANCY’S
eightieth birthday. I speak to Morris about this great event a week before the day. Would he like me to do some shopping on his behalf?

“I don’t think so, dear, no.”

“But Morris, her eightieth. Surely you want to get her a gift. Look at all these mail-order catalogs. Wouldn’t you like to choose something? A new cardigan, a bracelet, some of these Velcro slippers?”

“Nup,” he says, not tearing his gaze from his television quiz show.

I buy him a card to write and stand over him. His handwriting is affected by age, though only insofar as greater concentration on signing has exaggerated its sweeping ascenders and descenders. Nancy’s attempts to sign her name—on bank things, for instance, since she and Morris still have a joint account—have become stressful and also hilarious. She’s the one who’s amused, laughing till she cries as she tries and fails to write her name. I give her a practice few goes on a blank piece of paper, and these aren’t too bad. They don’t look like a name but at least they are done with brio. It’s when the form is produced that the trouble starts. No matter how many times I explain that the name has to go in the box, resting my fingertip as a guide, Nancy can’t get it in there. She signs above, below, or on the wrong part of the sheet entirely. Nor can she sign in a straight line. Morris doctors her signature afterward, adding vowels.

“What shall I write?” Morris asks, his pen hovering over the card.

“Oh, I don’t know. Something about her birthday.” What does he mean?

Happy Birthday Nancy, love Morris, x
. That’s all she’s getting. Not that it really matters.

Nancy enjoys opening her cards, but insists on putting them back in the envelopes afterward, and needs help getting them in. She carries the stack of mail around with her all day. She admires her Fair Isle cardigan, her new necklace, but won’t try them on.

“These aren’t my things.”

“Yes. They’re new. We bought them for you. And the chocolates we ate earlier, remember? And the bath bubbles. For your birthday.”

“Is it my birthday?”

“Yes. You’re eighty.”

“Am I? I’m not. You’re joking. You’re funny. Eighty, she says!”

When we bring her cake in, crowded with candles, and sing to her, she claps her hands and her eyes fill with tears. “Oh! Look at that! It’s so beautiful. I haven’t seen anything that beautiful for many a long day.”

She joins in with the singing, eats three pieces of lemon sponge, sips at her champagne, and sleeps most of the afternoon.

B
UT THE DAY
after, she’s noticeably tired. And that evening, when I’ve taken supper through to Nancy and Morris, and have settled down to our own meal, there’s a sudden explosive ruckus from next door.

“Just leave them to it,” Chris says, mid-potato.

I eat a leaf of salad and hear the door from their sitting room out into the hall closing with a slam, Morris remonstrating, “Nancy! Please!”

I rise from the chair. Chris puts his hand over mine. “Just leave it. Eat your supper,” he says.

“Na-an-cy! Nancy!” Morris shouts. I put my head round the door. “What’s up? Nancy stomped off?”

“Yes, and she’s taken her plate.”

This is a first.

I check the bedroom first. No Nancy. Nor is she in the bathroom. I go round the ground floor calling. No response. I can’t see her. She must have escaped, I think: Is there an eighty-year-old woman inching down the driveway with a plate? Then I hear a noise. Scraping. Coming from the library. Sure enough, there’s Nancy, standing in the dark tipping her supper into the bookcase. Sausages, potatoes, radicchio, off the plate and onto the paper tops of a row of novels. I’m only grateful there isn’t any gravy, though vinaigrette has already bled its way into Richard Ford and Edith Wharton.

I take Nancy back into her sitting room by the elbow and the moment she sees Morris, before I can speak, she turns to me pointing her finger and says, “This woman’s a liar.” She sits and fumes. But when I take her to bed she’s all smiles.

“You’re wonderful. You’re my friend,” she says.

“Well, thanks, Nancy. That’s nice.”

“I can’t tell you how grateful I am that you look after me so well. You’re a lovely person. No, I mean it. A really lovely person and kind.”

“You’re very welcome,” I say, smiling at her.

“Not like those other ones. Those other people here. I don’t like them.”