Keeper: One House, Three Generations, and a Journey Into Alzheimer's (3 page)

With the exception of a daily excursion into the conservatory for coffee, their world has shrunk into this little sitting room by the kitchen: its two armchairs, a 1960s coffee table, a partner’s desk, a television, a dresser laden with ornaments—unused steak knives and ancient paperwork idling in its drawers—and a bookcase scantily furnished with photograph albums, thrillers,
Reader’s Digests
, the
RAC Guide to Great Days Out
, 1970s cookbooks whose pages are stuck together with cake mix.

Nancy’s Alzheimer’s seems to advance in phases, as if we’re mining underground, into the unknown, toward obliteration. Currently we’ve hit the seam of lost prepositions. Morris gets exasperated with her lapses, her confusion, her failure to recognize what’s ordinary and deal with it in the old ordinary way. He has his own health problems: replacement hips that have worn out, poor circulation, numbed legs and feet. Walking is a struggle, and in the past he’s relied on his wife to be his legs. She has trouble with this role now.

“No, no!” we hear him shouting. “The cup! The cup! In front of the book! No, not under it, in front of it! Now put the spoon in it. In it! In it! Not behind it! That’s a book! Not a book, a cup! Oh, for god’s sake, woman!” She can’t seem to distinguish between cup and book. Parietal lobe damage is responsible for this, apparently; for failing to match objects with words in that apparently simple but sneakily complex two-hander we call recognition. But telling Morris so and asking him to be less irritable makes no difference. Occasionally Nancy gets fed up with being yelled at and gets her coat and handbag. On one such day she finds me in the kitchen making soup.

“Excuse me.” A plaintive little voice. She can’t any longer remember my name. “Excuse me, lady. I think I should tell you that I am going to have to find other accommodations.” This formal way of speaking is new. Perhaps it stems from uncertainty: her being a stranger in a strange land, needing the help of good Samaritans and needing to be polite to them. If you’re unsure who anybody is, or indeed who
you
are, come to that—their rank, your rank, what your relationship might be—then you’re likely to be deferential. Either that or bolshie, asserting your position. Bolshie will come later.

When Nancy’s upset, distraction’s the only way out. Everything else, and especially
reasoning
, only escalates and intensifies the trouble. I take her outside, where flowers and butterflies and birds and trees do the job like nothing else, all upset forgotten. We go down to the road, down the long driveway between looming dark hedges of fuchsia, and stand between the entrance pillars and admire the view. She runs an appreciative finger over the house name, indented in brass set into the stone, and I’m shocked to find that she can’t read the word that’s the house name. She can’t recognize the letters and, even when I tell her what they are, can’t vocalize them into a run of sounds. She’s interested in them, though, as in something half remembered, on the tip of her tongue, running her fingers over the brass a second time, frowning and with concentration. Shocked, I go back to Chris in his office. “Your mother can’t read; she can’t read anymore,” I tell him. It’s stunning because it’s so absolute, so concrete a loss. Parietal lobe damage is to blame again, it seems, in that zone of the brain where visual impressions are organized and reading and writing are ordered and understood. I read about this on the Internet, which has become my personal guide, dementia caregivers’ network, MD, and hospital rolled into one handy package.

It isn’t, any of it, a linear progression. Damage, or at least the symptoms of damage, can appear to waver like flickering wiring. Some days Nancy has vocabulary, some days not. She’s wandering the house looking for her shoes, and when I ask if I can help, she looks down at the floor, offering me a lifted socked foot. “The things, the things that go on the … that go on the things. I want to. I want the things that go on the end.” Perhaps this is a sign of parietal lobe damage again, failing to match word and object, or perhaps it has to do with the plaques/tangles invading Broca’s area, a patch on the left side of the frontal lobe that was named after Pierre-Paul Broca (1824–1880), who had a patient in 1861 who could say only “tan.” It’s the zone charged specifically with talking. It’s fascinating, this physical loss of abilities in the departments of self, but in tracking Nancy’s neuronal failure, I face self-accusations of ghoulishness.

Random stream-of-consciousness nonsense has become a feature in the mornings. Miscellaneous phrases from the past, from the long-term memory, fall out of the box in random order.

“I’m so glad you’re here,” she says, “because I was worried about that.”

“About what?”

She looks at me appraisingly, as if making a decision about whether she can confide, before launching in. “It’s been a long time, and I didn’t always do it that way, oh no, don’t you believe him when he puts it off, because I can tell you, it’s all the other way, really, to be quite truthful, and he knows it is, and I could strangle him sometimes, but the woman said I was to go that way, so I went, and it wasn’t there. Did I tell you that? I said that before and you haven’t got it. I know that. I do know that. I’m not really as stupid as I look, but she says—oh the things I could tell you about her, but I won’t because you shouldn’t—and I have got to find the thing now or I won’t hear the end of it.”

“Her?” I ask.

“The woman,” Nancy says, rolling her eyes.

“But it’s just you and me here,” I say. “We’re the only ones.”

“No, no, no,” Nancy says briskly. “Not you. The other woman.”

T
AKING ON
N
ANCY’S
care, full time, seven days, twenty-four hours, has been … I wish I could find a better word than
shock
. It’s been a shock. The thesaurus offers “trauma,” but that isn’t remotely it. It hasn’t been a “blow” or an “upset,” a “bombshell” or a “jolt.” It’s more like the kind of experience that leaves you staring into space openmouthed.
How on earth did I get here?
you think.
And how am I going to extricate myself?
There’s no adequate preparation for the physical demands, the physical hour-after-hourness of full-time caregiving. It hadn’t occurred to me that I would need to dress and undress her, for example, and get her toileted and into the shower, and would find myself, in consequence of this, adopting the nice-nurseish patter that theoretically I hate. “Righto, Nancy, let’s get you sorted for bed, shall we? Cardigan first.” When I get her into her nightie and take her trousers off, her feet are bluish: white and blue and mauve, her toenails thickened, opaque and yellowed like smokers’ fingers, her shins crocodile-skinned.
Proximity
. That’s the key word. Up close and disturbingly personal. There’s emptiness behind her eyes, something missing that used to be there. It’s sinister. It seems sometimes, in fanciful moments, that it’s Nancy who’s missing, though her body continues to live and breathe and walk around in the world, redundantly.

I
HAVE A
new role, a new identity. Mothering somebody’s mother, and being thanked for it effusively. Nancy comes into the kitchen when I’m cooking and wants to help. I find something for her to do and then she bursts into tears.

“Oh no. What on earth is it?” I put my arm round her and she cries harder.

“It’s just that you’re so-o g-good to me,” she blubbers. “You’re so good and kind and you do everything for me. I wish I could do something for you. Tell me what I can do. I want to give you something. A present. Will you take my money out of the bank and get yourself a present?”

“There’s no need, really. I don’t need anything. Really,” I tell her.

She goes back into her sitting room.

“Oh god, what is it now?” I hear Morris asking.

What exactly is my new relationship with my in-laws? I am their housekeeper, something approximating their parent, their perpetual hostess, but also a servant. I send Morris a pot of Earl Grey and a warm Victoria sponge, feeling as if I have visitors and need to provide afternoon tea, and in return he gives Jack a penny and says, “Here, give this to the waitress.”

We begin to integrate ourselves a little into peninsula society. First into commerce, then into other people’s kitchens. Professions here are often of the multiple kind. Paul, the gas fitter, installs an eight-burner stove in place of the inherited curly-plate electric, then makes new stable doors for the yard, and is turning out to be a very nifty tiler. Though tradesmen aren’t easy to find. At the end of the week I scissor the local paper, cutting out announcements for the pinboard. The newspaper’s being read everywhere we go on publication day, by shopkeepers, office and health workers, people at the wholesalers and in boatyards, people in tea shops. Ordinary routine comes to a halt. There’s a piece about new Neolithic finds made farther up the coast. Someone has been shooting seals and the public is appealed to for tip-offs. Wrecks have been plundered by treasure seekers, and a diver’s brought up dead. A man’s airlifted from an uninhabited island, injured while birding. A skipper’s been charged with being drunk in charge of a boat. There’s been another suicide, someone who came from England on holiday and leapt off our cliffs to his death. There’s been a country dance, and intoxicated teenagers hospitalized. All this is absorbing enough, but I’m more interested in the advertising. The advertisements are a godsend. Not every trader has a shop or even a sign, and lots of the smaller businesses are done anonymously from home. Thus it is that we find ourselves in a barn one morning, choosing tiles, while being watched intently by heifers.

We take afternoon walks on the beach, going down in the car so that Morris can come. He can’t make it over the strip of pebbles, nor manage the low grassy dune, so he sits in the car with the door open, watching and smoking. I take the dogs to the water’s edge and throw sticks toward America, the retriever plunging in after them and the Jack Russell barking at him from the shallows. Chris walks his mother up and down the length of the sand, Nancy holding on to his arm and striding along. She’s happy, just for this moment, radiant, smiling into the sun. Sometimes a change in the weather is enough to restore our optimism, and this seems truer for those with Alzheimer’s than the rest of us. Nancy’s world is re-created every minute. She lives in the moment, and therein lies the problem. The minute we get back indoors, she’s lobbying to go out for a walk. The walk she’s just had is rendered down into an idea, one that persists and nags at her. Perhaps the best thing for Alzheimer’s sufferers might be nomadism of a kind. A permanent ambling trek in talkative company, with pauses only for meals and to sleep, would make her happy, I think. Everything, every moment, would be new, and everybody in her party would be on a more equal footing of constant change.

It’s our wedding anniversary at the end of the month and Chris and I go to the village restaurant to celebrate, leaving the children in charge. We eat crab cakes, a fish and crustacean stew, a lemon tart with marmalade ice cream, delighting in everything but preoccupied with home, two mobile phones winking on the tablecloth.

“The fish is wonderfully fresh,” Chris tells the owner. “Is it caught in the bay here?”

“Actually no,” the owner says. “We can’t get the quality here. All the good stuff goes south. All our fish comes down from Shetland.”

Chapter 2

Inspiration may be a form of super-consciousness, or perhaps of subconsciousness, I wouldn’t know. But I am sure it is the antithesis of self-consciousness
.

—A
ARON
C
OPLAND

W
E HAVE ALWAYS HAD A TASTE FOR SEMIREMOTENESS
. The short-drive-for-milk, long-drive-for-olives model is one Chris and I have honed and perfected. We thought we knew all about backwaters. But this, the peninsula, is a backwater in a different manner. Living here makes you question the terms of your disengagement with the Big World, something that thus far has been merely instinctive. In this society, almost as far north as it’s possible to be in Britain, the Big World becomes a catchall for everything that is wrong with life. The Big World is referred to as
south
. The question of whether, for instance, children will have to go south for work is much discussed, in worried terms. South is corrupt, spoiled, feared. We have a little kingdom here, a far-flung corner that prides itself on difference. It’s a Roman outpost. The barbarians are talked about partly with pity and partly with scorn. It’s Shakespeare: “This other Eden, demi-paradise, / this fortress built by Nature for herself / against infection and the hand of war. / This happy breed of men, this little world, / this precious stone set in the silver sea.”

It’s easy to assume that there’ll be a natural camaraderie between those who choose the edge and not the center. It isn’t always true. The physical edge is easy to achieve—you just take up your bed and hand it to the furniture removal company. But what about the metaphysical edge? Edge dwellers are no more likely to be readers, to be articulate, to be interesting people with fulfilled creative impulses—all the usual stuff we hope for in our neighbors—than anyone else. They’re just as likely to watch bad television and talk about it. They’re just as likely to be unhappy. More so, probably. Unhappiness has driven a good number of the edge dwellers edgeward; unhappiness that morphs into reclusiveness. Utopianism brings others, and intense sociability, an aptitude for running things, starting things, galvanizing all of us disparate souls into community.

Aside from the spatial demands of a two-family setup, Chris and I came here for the usual material reasons (big house, smallish price), for the particularly privileged reason that we work at home and can choose our location, but also, certainly in my case, looking for a new relationship: one with the Sublime. I came looking for inspiration (for work, yes, but also for life) as something concrete (the quality of the view), something engulfing and omnipresent (the quality and shape of clouds)—all of which is just outside the door and there at whim. It wasn’t really about clouds, of course, or views. It’s always about engaging with elementals. Mail-order catalogs find their sales rise if they choose backdrops of beaches, meadows, hillsides, riverbanks, and forests. Our visitors’ book is bulging with remarks about the spirituality of the location. If these things are emblematic, then we on the peninsula are emblem rich, emblem saturated. We have house, meadow, wood and wall, a vast panorama of sea and sky, steep drops and long beaches; we have weather and the tides at our disposal. Those with a lot of geography in their lives are envied. A person at one with geography is admired—the more extreme the geography, the more extremely.

The landscape here is people dwarfing. A succession of headlands rise vast cliffed. The Sublime is here if it’s anywhere. Wordsworth is its chief prophet, in my library at least. I have tried to look at my surroundings with his eyes, feel bolstered in his near-supernatural manner. Look at this, from “Tintern Abbey”:

And I have felt
A presence that disturbs me with the joy
Of elevated thoughts; a sense sublime
Of something far more deeply interfused,
Whose dwelling is the light of setting suns,
And the round ocean and the living air,
And the blue sky, and in the mind of man:
A motion and a spirit, that impels
All thinking things, all objects of all thought,
And rolls through all things
.

We expect this of wild places, because we are all Romantics in our way. We still live in the Romantic age, the age of will and the individual, seeking some anthropomorphic godlike power in immensity, perhaps, as we park the car at the cliff-top walk and stand, coat blowing, looking out at nothingness, everythingness, somethingness: whatever it is that rolls through all things, it’s ill defined. Or something more mysterious. Here’s Wordsworth in
The Prelude:

… and I would stand …
Beneath some rock, listening to notes that are
The ghostly language of the ancient earth,
Or make their dim abode in distant winds.
Thence did I drink the visionary power
.

Visionary power. That’s what I came looking for. For writing, but also as a corrective to the person that caring for the in-laws might make me; a balance, a bulwark, a reasserted sense of perspective. But what is it, this
spirit that impels all thinking things?
It might be God, it might be Gaia, or it might be the effect that immensity, despite its inanimate nonconsciousness, has on the mind, and that’s what I take the Sublime properly to be. Whatever the case, people come to live here with just the same kind of impulses, expectations, needs. The wilderness knows nothing about us. Self-reinvention isn’t only possible here; it’s provoked, nurtured, made flesh.

The Sublime, it turns out, is disappointingly elusive. Which is to say that I don’t often feel it, almost never; I more often find I’m feeling nothing, and I know I’m not alone in this. There are things that stop us from being properly present in the landscape, that stop me, at any rate. The self intrudes on the Sublime; the past and future intrude, and worse, much worse, the banal considerations of domesticity, the
lists
. The lists follow me out to the cliff tops and onto the beach. I go there hoping for, at the least, the experience of a kind of self-dilution, but instead the strip of sand becomes just another venue for the things that bothered me at home. In addition to which, I’m cold, it’s too windy to breathe easily, my ears hurt. My feet are wet from the thick dew of the dunes I had to cross to get here, my ankle turning painfully on the smooth pink landslip of pebbles. I’m distracted. The risk, now, is that the landscape will become peopled by my own mind. The sea, its restlessness. The wind, its stubbornness. The gulls, their superficiality. The Romantic poets went out into the Sublime, sublimity bagging, as a response to the encroaching materialism of their times, the Industrial Revolution and the mystery-extinguishing age of science. I go in order to feel stronger, strong enough to deal with Nancy and Morris and their constant neediness. Wordsworth would have enjoyed the peninsula. He’d have been out all day, returning unhungry, unthirsty—he was possessed of extraordinary unworldly stamina—and would have settled in a fireside chair to write about it, barely aware of numb fingers, cold ears, wet socks. The experience would have suffused him with his reportedly “lofty thoughts”; it would have convinced him that despite the “dreary intercourse of daily life … all which we behold [i]s full of blessings.” Which is how we all want to feel.

Wild and desolate beauty is, it turns out, not a backdrop to life that works for Alzheimer’s. Nancy seems barely to register the landscape, and when it’s pointed out to her—a stunning lighting effect over the hills, a sunset over the bay—she seems not to notice, or at least not to see it properly. Her admiration comes across as forced, something done to humor me. Perhaps beauty, aesthetic sense, is lodged deep in the memory, and for Nancy that memory is lost. Perhaps beauty is something we’re taught and must remember, and now that Nancy’s lost her bearings intellectually, she’s also lost the idea that a golden hill is preferable to a cloudy one, a red sun prettier than a yellow one. Perhaps our aesthetic sense is as much autobiographical as innate. Mistakenly I’d thought that the Sublime would make itself felt in Nancy’s circumscribed life, that its primitive kind of language of symbols and feelings (the feeling, simultaneously, of being nothing in the universe and at its dead center) would speak to her, digging deeper in than language can, or that at the very least she’d find the wildness stimulating. I thought she’d love the cliffs and the views, the walks and the seabird colonies, the seal families pulled out on the estuary rocks. But Nancy sees the hills and headlands, seas and skies, as a backdrop to nothing happening, an absence, a stage set where no play will take place. Only people interest her now. Alzheimer’s sufferers like cities, bustle, noise, a person-made world. Or at least this one does.

We made the decision to take Morris and Nancy in some six months before it happened. We decided that the answer to the problems proliferating with their living alone was that we should find a much bigger house, one with an annex or a cottage, a project Nancy and Morris would make a contribution to, an agreement put on a formal footing with a solicitor. It was either that or get them urgently into residential care, and Morris was miserable about that prospect (this is an understatement—throat cutting was mentioned, as I recall). But all the contenders that came up in our own area were way out of our league. They were the kind of houses that had their own brochure. Nevertheless we went to see some of them. The ones we could almost (but not quite) afford were in grotty surroundings, by main roads or cheek by jowl with stalag-style chicken farms, encircled by council estates and dead cars. Realizing that this was the reality of our budget took a lot of legwork and a lot of driving. We drove a long way and made Nancy very carsick. Then we spent two months almost buying a ruined farmhouse, drawing up plans for the conversion of outbuildings, but the projected costs spiraled out of control and we abandoned the plan.

Faced with a dead end, I cast the Internet net wider, including anything big in any location. And that is how I came to see the house, on a Web site, and send the fateful e-mail to Chris, who was working in the next room.

The answer flashed back.

“Far too remote. How would I get to meetings? Need to be practical about this.” And then hard on its heels, another e-mail. “Had a look at the flights situation. Possible, if not exactly cheap. And I could get a little boat for weekends. Tempting. But the running costs will be horrendous.”

“Well, I could turn part of it into a bed-and-breakfast,” I replied. “There’s a separate apartment, up a separate stairway.”

W
E MADE THE
family visit to the house on April 1 and a second visit the following afternoon, invited to tea by the charming eighty-year-old owners, last of the line. Not literally the last of the line, in fact, but the last who could countenance
living
here, a long way from proper jobs and department stores. The house set its trap with care. It was a perfect spring day, warm, with barely a breath of wind. The beach down the lane shone out yellow and blue. Spring birds were all atwitter. Children romped around the garden, their distant shouts brought closer by the reverberating of voices off old stone. Away from the formal lawn, down the drive toward the sea, wilder areas of garden beckoned, tall grasses mown into paths, and a secretive wood, where sycamores stunted by wind, venturing only tentatively above the line of coping stones, huddled, heads down, arms linked above their heads like a rugby scrum. Pools of sunlight fell among them. I sat on a mossy bench and the sun was warm on my face. A tame turkey sat at the base of a tree looking back. Once the heart is lost, the head can only throw in the towel.

Perhaps this should be known as the Lichen Peninsula. Lichen’s everywhere in pale green mats, curly fingered, densely layered. The air smells different here. Linen fresh, ozoney, briny, undercut by something earthy and sappy. When the tide is out and the sun is warm, there’s a rank drying seaweed note. In summer—and summer is short, sweet, cherished—the air is full of dry grass aromas, sweet hay scents mixed in with the brine, and the light, sea bounced, is dazzling, jabbing in unprotected eyes. Everything seems vividly colored. There’s a soaring pale wash of blue above, with a quality about it that’s nostalgic: the kind of soft and summery depth that childhood skies had once, the kind that small airplanes leave trails in. The grass is the brightest kind of green. The sea is clear and painterly: the royal blue and azure and turquoise marking shallowness on clean sand, the dark green and brown patches indicating depth and weed. There are three beaches within a five-minute walk, all different: estuary and pebble and sand. The sand beach is closest, just down from the house, and the pebble beach is at right angles to it, round the corner of the headland. The estuary, on the road toward the village, is huge and golden and puddley. Comical oyster catchers stride briskly about on drinking straw legs, then stand together crouched over, round-shouldered in black coats like old men in a bar.

I’d thought that Nancy might respond to the history of the house. It was a foolish thought. But I’ve always liked buildings with a strong sense of identity. Houses that don’t need you, their character already made and set by other, more interesting people who pushed their experiences, their thoughts, into the stone of walls and wood of floors, the faded wallpapers and paneled doors. That’s what original features have always signified, to me at least. It’s relaxing to feel yourself peripheral to another era, a ghost from the future in a house where the past is still present. I had a peculiar idea that Nancy would respond to this. Her early life was spent at a castle—a real one, with acres of lawns and walled warm corners where pineapples and peaches were grown under glass. Her father was head gardener at a great estate, one that’s now a hotel, wedding venue, and conference center with depressingly corporate Web pages. Added to which, Nancy’s early married life and her child-raising years were spent in Victorian city surroundings. I thought she’d feel at home.