Keeper: One House, Three Generations, and a Journey Into Alzheimer's (4 page)

On our second day, excitedly, I take her on a tour of the outbuildings. The main yard has an L shape of them, incorporating tractor shed, coach house, garage, stables, a quaint row of low outhouses bordering the drying green beyond. The gardens are charming, though romantically gone to ruin, with wide herbaceous borders, extensive shrubbery areas with paths behind, and elephantine hummocks of
Escallonia
and
Hebe
. Generations of family dogs and cats are buried in the wood and in the vegetable garden, with headstones and names and dates.

I take Morris on the tour, too, and we move at his slow, stick-aided pace round the grounds. Morris had been typically gung-ho about the move. He was going to learn to sea fish, and go sailing with Chris. He was going to get one of those electric buggies. He was going to plan and oversee the planting of the kitchen garden. But the truth is that he’s no longer good with outdoors. Outdoors taunts him with everything that he’s lost. His life today consists of the achievement of selfhood through television. Pictorial absorption. Mind meld. A domestic annihilation that invokes Nancy’s presence, perhaps, in healthier and younger days, when all the adult comings and goings of television pictures mirrored their own busy lives, their powers, their choices, and was restfully vicarious. Now it’s as if he disappears down a wormhole out of the present. Nancy’s presence is preferred, the two of them driving the spaceship together, like they did in their heyday at the family house, when they converted a tiny study into a private TV room, two armchairs and a television squeezed into a pod. But now that she’s ill, Nancy isn’t content any longer to sit in her armchair all day with the TV on, and why should she be? There has to be more to life. Even she, standing at the doorway that leads from moderate to severe Alzheimer’s disease, can see that.

Morris wants to be indoors, and Nancy wants to be out. She comes into the garden with me half a dozen times a day, and every time we go I point out the view. Ordinarily she’ll say “Oh, ye-es,” drawing the word out as if impressed, but her attention flickering. I’m not convinced she really sees it. So I persist. “Look at the next headland, Nancy—do you see the lighthouse?”

“It’s wonderful. Look at that! And really not very much traffic at all.” She’s pink faced because it’s humid today, and because she isn’t good with the heat.

She seems to know what I’m thinking. “I’m not good with the heat at all, never have been to be quite truthful.”

The short-term memory is shot. The long-term memory is failing, but parts of it are still intact. Fewer of these memories—records stored up on the higher ground, the flood waters lapping against their green hillock—present themselves as autobiographical lately, though random instances of likes and dislikes remain, and rise casually to the surface at unexpected moments.

“You’re hot. Maybe you should take some of your cardigans off, then,” I tell her.

She looks down, holds her arms out from her body. “Oh. Yes. I didn’t think of that.”

I help her to take the three extra ones off. But when I see her a few minutes later she’s got them all on again, and is just in the act of buttoning the top one, badly and askew.

W
ITHIN A FEW
short weeks we fall into a sort of pattern that we should probably call a life. It’s my in-laws’ life, at least. The challenge for us is not to let it be all of ours. For now, there is optimism. The new life is full of structure. Structure and comforting sameness, that’s what The Book says Nancy needs, and I am, at least for now, keen to do things by The Book. We get Nancy and Morris up once the children are off to school, put them back to bed at night when Morris is ready, and in between the days unfold almost identically. Only meals remind them of the time—meals and the television, their lives parceled out in programming. The day begins with the delivery of breakfast to their sitting room. Morris announces his arrival and his readiness for the teapot by means of several penetrating coughs. He’ll stay there all day, politely accepting lunch and supper like a passenger on a long-haul flight. They’ve elected to eat all their meals there, on lap trays with padded bases.

Nancy will sit down for short periods, but the rest of the day she follows me around. She comes with me to walk the dogs in the morning, dawdling along and bending to look at things like a young child does.

“Don’t pick that up, Nancy. It’s dirty.”

“What are you talking about? It’s perfectly clean.”

She brings sticks home, the tops of ineptly picked flowers, sprigs of dried grass, a stone, a leaf she liked the look of, and puts them on the table. Within five minutes, she’ll be complaining about them—“Who left these horrible things here?”—and ferrying them individually to the wastepaper basket.

After the dog walk, we come in and have a cup of tea and deliver one to Morris with cake. Cake’s become a big part of the day. The dishwasher’s kept busy with teacups, and I am learning to measure out my life in coffee spoons. The chirpy drone of a home-improvement show burbles through the kitchen door. Nancy helps load the dishwasher, handing me things one by one, wiping the jam from knife to hands to trousers. We put some washing on, and then, because Nancy loves housework, we zip round the ground floor vacuuming and dusting. Nancy is delegated little jobs. She gets to tidy the newspapers and magazines and does this conscientiously, glancing at me to ensure I’m happy. She is given a duster and some spray polish and sings as she polishes: “When Irish Eyes Are Smiling.” This is her song. Since we got here she’s sung nothing else. The trouble is, she doesn’t know the words and fills her own into the stanzas, experimentally.

“When all the things are lovely, dee dee, dee deeee de dee, And I am a milkmaid and I have a car, de dee, de deee, de deeeeeee.”

O
UR MEMORIES FOR
music are stored in a different part of the brain from the ordinary language memory, and tunes survive longer in Alzheimer’s than words do. Capitalizing on this, dementia singing groups are springing up around the world. One reports great success with the Beatles songbook. What’s interesting is that the music memory appears to bring the words along with it, unlocking the language block. These groups have reported success with quite advanced dementia, citing cases of people with very little residual language who find, after a few sessions, that they can recall and sing lyrics without trouble.

Music professionals with dementia make for interesting case histories. The American composer Aaron Copland (1900
–
1990), who died of Alzheimer’s, seems to have had a slow fade, having first developed symptoms in the early 1970s. He didn’t compose much after 1973 other than for reworking a couple of old pieces, but was still conducting his best-known work,
Appalachian Spring
, almost to the end—though critics complained that he lost the thread in the very last performances. Conducting is done from a different part of the brain again—squirreled away in the cerebellum, where our highly practiced, automatic gestures are delegated and stored. The cerebellum is one of the last places reached by Alzheimer’s disease.

Copland seems to have had a lonely end. He was dropped by old friends as dementia took hold; two such who ventured to his home on his ninetieth birthday, three weeks before his death, expecting there to be a gathering, a party and a cake, found there were no other visitors. People are afraid of this disease. I know of people who find that when their parent becomes demented, the rest of the family and all the old friends cut them off. One of the people I have “met” on Internet Alzheimer’s forums, an American who’s returned from her city life to live with her ill and widowed mother, tells me that not only have people stopped calling or visiting, but when challenged about it they grow hostile, pointing out that it’s her mother’s “bad behavior” and “madness” that are to blame for their absence. People act as if dementia were contagious, she says, and the social stigma is as strong as ever. It can’t help if you’re a gay man, like Copland, without even the grudgingly given support of family. When things get difficult for old colleagues and fans, it’s easier for them to turn away, untroubled by duty.

Nancy begins to sing variants of “When Irish Eyes Are Smiling” all day, on and off, for days at a time. I know what it’s like to get a song stuck in your head, one that seems to be there in the background of thought, unbidden, like Muzak playing in a shopping mall. But it’s possible that Nancy is suffering musical hallucinations. This isn’t just music that’s imagined but music that’s heard, as if by the ears. PET scans have shown that in hallucinators all the same areas of the brain light up as they do when people listen and pay attention to external music, other than for the principal auditory cortex that does the listening, and in this respect the inner music is exactly like a visual hallucination. The brain is “hearing” (again and again) music that isn’t coming in at the ears but is in every other way perfectly replicated. It doesn’t seem able to turn it off. Nancy, I suspect, is stuck in a hallucinatory loop, and is singing along to hers. I try her on some other songs I think she might remember, with no luck, though she can hum some of them, in snatches.
Three blind mice, see how they run
.… We start together, and sing the same line again, and then we both come to a halt, look at each other, break out laughing. Neither of us can recall what comes next. Farmer’s wife, carving knife, but how does it go exactly?

Chapter 3

A memory is what is left when something happens and does not completely unhappen
.

—E
DWARD DE
B
ONO

W
E’RE A MONTH IN TO THE EXPERIMENT AND
I
DECIDE
that for now at least, I’ll give up the struggle to work. It’s the school holidays and for now at least, the pressure can justify itself in being off. I kick to the back of my mind the persistent question: What will Nancy do all day when you’re busy? That isn’t really the question, of course. The question, the real question, is: How will you get any work done with Nancy in the house?

I go out into the hallway and see Nancy rubbing away at the same table I left her at ten minutes earlier, sweeping her cloth over the table legs and round the rim. The spray polish isn’t consulted. It’s too difficult to use the push button. The squirting stuff comes out at unpredictable angles. She places the tall can at the other end of the room, under another table, so it can be overlooked. I rescue it. I hover with it, my finger on the trigger.

“Shall I spray a little for you? It makes the furniture shinier.”

“No, no, don’t bother. Don’t bother yourself. I don’t like it. I don’t like any of it.”

“Oh dear. What’s the matter? Are you tired? Would you like to go and sit down?”

“Certainly not. I’m fine. I’m in the prime of life. I’m not going to let a little thing like the woman get me down.”

“Woman?”

“The woman. She comes here. She tells me what I’m to do and I’ve to do it if there isn’t to be trouble.”

She’s talking about me. Doubt surges in. I thought she liked to clean. I thought it made her happy. That’s the only reason I bought the spray.

“Stop then,” I tell her, taking hold of her hand. “It doesn’t matter. It doesn’t really need doing again. You did it yesterday. It’s fine.”

She throws the duster across the hall. “This is not my job. I wasn’t brought here to do all the work and I’m not doing it.”

“Come on. Let’s go and find Morris.”

“He’s a lazy bugger, that one. Old buggerlugs. All he does is sit there.”

“Well, he has bad legs, Nancy.”

“I know. I know that. You don’t need to tell me that, thank you very much.” She stalks off, disappearing into her sitting room and banging the door. There’s dark muttering from within, Morris saying, “What? You’re not making any sense at all!”

Nancy helps me get the lunch ready. She butters the table, puts the bread together at odd angles, picks ham off the pile with grimy fingers and eats it, hungrily and a slice at a time.

“I thought you were making Morris a roll.”

“No, no. Not for him. He doesn’t deserve it.”

“Here. Let me.” I take charge of the buttering knife. “Let’s take him a chair picnic and go into the garden. We can hang the washing and have a walk.”

“Ooh lovely. I like a walk.”

A
FTER LUNCH WE
make soup for tomorrow. Nancy wants to help and spends ten minutes scraping a carrot. What’s left of it when it’s scraped collapses into three weedy bits. I have sympathy for the carrot. The carrot and I have a special spiritual connection. I need to get away from Nancy and her wittering for a bit. I can’t stand any more. I am missing my laptop and silence and words that come biddably out of finger ends. I am beginning to feel, quite suddenly, rather desperate. I jump up.

“Well,” I say, “that was great, but I have to do some work now, on my computer.”

“Oh dear,” she says without feeling. “You’d better not be late.” Her face has a customary betrayed look. Betrayed and stoical. I know which way this mood will lead and have a silly tactic at hand. It’s called Can You Walk Like This?

“Can you walk like this?” I cry, putting my hands over my ears, sticking my elbows out and my knees, losing a foot or more in height and walking like a robot, making nerp-nerp robot noises.

“Oh no! No! I can’t do it!” she screams with laughter. I glance round and find her wiggling her fingers and moving her head from side to side, and laugh, too. Then I take her firmly by the shoulders from the back and maneuver her into her sitting room and put her in her armchair, still in robot character, Nancy giggling, Morris looking puzzled.

I go to the drawing room and swoop on the laptop, sinking into my customary chair, my customary spot by the window, with a happy sigh. This is where I should be. This is home. But then I find I can’t work. I’m listening for Nancy. And sure enough, there she is. I hear her wandering the house, trying each door in turn.

“Oh look, look at this one. This is a nice one. A bit dark. Very big. They don’t know how big it’s got lately. Somebody should tell them, to be quite truthful. I think they might come and see it and be surprised. Hmmm, hmmm, hmmm.” The singing starts up. “When all the place is ready, and the place is fine and free, and the man isn’t there and the man isn’t there, and that is all for me.”

She can still rhyme. She butters the table but she can still rhyme, can still come up with lyrics that scan, can, in effect, still write poetry. This is a very peculiar disease.

I hear her rattling the conservatory door. “Nancy?” I call out, expectantly.

She doesn’t answer. More rattling. The rattling grows louder, as does the muttering. I jump up to go see. “Nancy?”

“What?” Now she’s rattled, too.

“Don’t let the dogs out, remember.”

Paddy is a reddish gold golden retriever, dim and soppy and mildly bowlegged. Left to himself, he’d be happy to carry paired socks round the house all day and wag things off tables. Unfortunately he’s easily led astray by his little white friend, Sparky, a Parson Jack Russell, who’s long legged and well muscled, has adorable cupped ears, is formidably cunning and a merciless killer. Sparky is quick to learn and Paddy quick to follow. Paddy is his friend’s dopey apprentice. They hang around the outer doors waiting for Nancy to let them out.

“Oh doggies. Hello, doggies. Nice doggies. You want to go out? Here, off you go.” Whoooosh: a flash of streamlined white and an ungainly portly ginger thing cantering gamely behind are seen disappearing into the horizon line. So this is how it is. About the dogs, we are dogmatic. They can’t ever go out on their own. Our neighbor has eight cats. Beyond the lure of feline sniffs, the mesmerizing cat trails leading through the wood, there’s an open gate, miles of quiet roads and open fields. There’s trouble out there. Farm dogs to get into fights with. Unsuspecting pet rabbits. Plus, and here’s the clincher, they’ve proven not completely trustworthy with sheep.

I
T’S A BEAUTIFUL
day and Nancy wants to be out in the garden. Nobody has the time (at least Chris and I don’t) or the inclination (Morris doesn’t) to be in the garden with her in the way that she wants: attentive, lazy, gossiping, devoted to her amusement. But it’s a really beautiful day and I have to face the fact that I’m not going to get any writing done. I go out to do some weeding and take Nancy with me. Every inner piece of wall has a herbaceous border, and every border is overgrown. It’s the myth of Sisyphus, horticultural version: I push the wheelbarrow up the hill and it just rolls down again. Dandelions see extermination as a challenge: lop their heads off and they’ll grow twice as many new ones overnight. But it’s a beautiful day and the heart wants to be outdoors. The heart wants it and Nancy is determined. Nancy and I go out singing, each our own versions of “When Irish Eyes …”. Hers, I note, involves a pudding and a gate. I give her the two gardening cushions to hold and a rug to sit on, and I fetch the trowel and the shears and a scarf for my head. We go to the border beyond the north lawn, which is wide and full of white and yellow flowers of uncertain parentage, and the whole dishearteningly grassy. I kneel and have the trowel poised and sense Nancy standing behind me. She’s right behind, leaning forward to touch my shoulder.

“Do you want to help?” I ask her.

“I’d love to help. Nobody ever asks me, though. They’re not nice people here. They don’t let me out.”

“Well, you’re out now.”

“It’s the first time in about five years, I can tell you that.”

“Here. Kneel down next to me.” She can’t, of course. She’s almost eighty and her weeding days are over. But she’s already bending, apparently effortlessly, to pull dead flowers from last year’s
Potentilla
and secreting them in her palm. She makes a heap on the rug, and then she pulls a tulip out, bulb and all, holding it aloft like a sword and looking vaguely triumphant.

“Let me tell you what needs doing,” I say pleasantly.

“You should because I’ll make a terrible mess of it otherwise. I can’t remember things anymore.”

Is it memory that’s returned to her, in this gobbet of self-awareness, transitorily, almost freakishly, or is it language, allowing her to express thoughts she can’t ordinarily articulate? Has the singing done its work?

“I haven’t been very well lately,” she tells me. “But I can’t quite put my finger on it. What it is that’s wrong. Something’s wrong, I know that. But I can’t … I can’t seem to find it.”

She knocks the heel of her palm against her forehead and her eyes fill with tears. “My memory doesn’t work. I can’t remember things. Even quite little things. And they tell me it doesn’t matter. At the hospital, they tell me that. But it does matter. It matters to me. They say I’ll get better. The doctors, they do say that. I have to be patient. But it’s difficult, you know. And I know that something is very badly wrong.”

There’s a shout from behind and Jack’s there. “Hey, Mum. Hi, Gran.”

“Hello, hello, hello,” she says to him. “And how are you today? How’s my little man? You look very smart in your jacket.”

“I’m fine, thanks. Well … I’m just going in. Starving,” he says, turning and loping away.

“You must be, yes, you must get something nice to eat,” Nancy sympathizes. She runs her fingers through her hair. She looks at her old hands and shakes her head.

“Nancy, you have an illness,” I blurt. “In your brain. It’s the illness that makes you lose your memory.” Why do I feel so urgently that I want to make her aware of her predicament? There’s no point in it, truly none, when I know that the waters are about to close over her again.

“They told me in the hospital that I would get better, though,” she says. “The doctors said to me when they sent me out, ‘It will take a while but you’ll get better slowly.’ ‘Slowly, but you’ll be fine.’”

“You won’t get better,” I say. What am I doing?

“Well, that’s what they told me, that’s what the men said.”

“You’ll get worse. You won’t be able to remember anything. And eventually it will make you ill and you’ll die of it.” I hate myself. I do.

“We all have to go sometime,” Nancy says. She sits down on the rug beside me and we look at each other. I find myself taking her hand, which is gnarled and blue veined and ruched with age. She’s wearing eight rings. There’s a large wart on her knuckle.

“Tell me what you remember,” I say.

“Not very much at all and that’s the trouble,” she says. Her voice is warbly with emotion. She has a look of great concentration. “My father. My father worked in the garden when I was born. We lived in a big house, you know, huge. It was absolutely beautiful. So many flowers and trees. Then I got sent away in the war. He was so clever, such a good gardener, you know. My brothers were always busy. They got whatever they wanted but I didn’t. I minded that and I’ve minded all my life.”

She keeps talking about the “brothers.” But she only has one—doesn’t she?

“What’s your name?” I ask her.

“Nancy. But I’ve always hated it—ugh! It’s a horrible name.”

“Do you know your married name?”

“Oh, that. No. Old buggerlugs just sits there.”

“He has bad legs, Nancy.”

“We all have bad legs sometimes. There’s people a lot worse off than him. But he won’t get up. He needs to walk about a bit. It doesn’t do him any good just sitting. I tell him and I tell him and it doesn’t do the first bit of good. He won’t listen to me. He doesn’t hear a word I say.”

“Do you remember living in Edinburgh? Meeting Morris?”

“Oh yes, of course.”

“And working at the company? You were the office dynamo, you know. You ran the place more or less single-handedly. Morris and the children never saw you. Worrying over your computer system.…”

“Oh, those were such good years. Such good years.”

“Do you remember getting the babies?”

“Of course I remember, course I remember.”

“What are their names?”

“Oh, it was such a long time ago. I’ve forgotten all about it.”

“You adopted them, didn’t you? A boy and then a girl. I’m married to the boy baby.”

“Are you? That’s wonderful. Oh, they were lovely. What wonderful days.”

I
T’S
T
HE
B
OOK
—one of the many books that tell the caregiver how to care—that instructs me that I should be straightforward with Nancy about her illness. The Book says that acceptance is the key. It makes two assertions: (1) those who accept the truth handle the situation better and (2) dementia sufferers don’t have to be violent and unmanageable. No explicit connection is made between these two remarks but I sense there may be one. Caregivers, in this psychotherapeutic view, are like parents of potentially unruly children. The same scary nanny woman who haunts British TV, who diagnoses faulty parenting in almost every case of trouble, might have a parallel, a scary caregiving expert, sent around to three-generation households to watch, diagnose, prognosticate. She, no doubt, will pronounce
bad caregiving
as a self-fulfilling road to trouble. Like being a parent, being a caregiver is fraught with expectations, duties, and blame.

The Book says that dementia sufferers should be told what’s wrong with them. Trust is vital, The Book explains; it is of paramount importance between caregiver and care-receiver, and there can be no trust without disclosure. If a person has Alzheimer’s, she should be informed it’s Alzheimer’s. She has a right to know and to plan accordingly (to kill herself while still able, I think they mean). A doctor on the Internet writes quite candidly that he would plan for suicide if he were diagnosed with dementia. Suddenly, this approach is commonly talked of in Web land. It’s boosting the social respectability of self-inflicted death in the United States, one of my forum contacts tells me. There’s quite a bit of it about, she says: the stockpiling of pills, and unemotional discussions about the best, most reliable, and least painful methods. But Alzheimer’s has a different profile in the United States—an additional profile to the one we know in the United Kingdom, I’d say, from reading around American forum culture. The sheer numbers of dementia sufferers and much earlier diagnosis: put these together and what happens is that a lobby group grows up. That’s what has happened in North America. Articulate, professional, early-diagnosed dementia sufferers, as yet showing few signs of the disease, able to talk and write and head up campaigns, are lobbying for better drugs, for widespread scanning, for more and better research. There is a good deal of humor in the mix: black humor and self-satire. If these new stars of the dementia lobby seem impressively to “go gentle into that good night,” it’s only because they’ve been diagnosed years earlier than used to be the case. Their good night is likely to be a ten-, fifteen-, twenty-year event, and they are engaged in a long journey through a gradually encroaching twilight.