Keeper: One House, Three Generations, and a Journey Into Alzheimer's (10 page)

The truth of things came out piecemeal. Things had reached a stage beyond forgetfulness. Morris and Nancy were beginning to fight: him accusing her of not listening; her defending herself energetically. Things had taken a downturn domestically—though even in her prime Nancy was never much of a cook. They both worked long hours and Nancy became a dab hand at short-cut cuisine; macaroni made with Campbell’s tomato soup sauce stands out in the memory. But everybody worshipped Nancy’s raspberry jam. There were never jokes or winks about the jam. A jar had such currency that my father hid his from the rest of us at home, on a high shelf in the kitchen. One of my earliest memories of Nancy sees her presiding over great bucket-sized preserving pans, sterilized jars set out ready. Ironically, one of my first conversations with her—while helping with the raspberries, and I can’t remember how the subject came up—was about euthanasia. It would turn out to be a pet subject. “There’s no point keeping people alive who are useless,” she’d say, in addition to the usual line about “dogs in that state not left to suffer by the vet.” I was afraid to inquire what “useless” meant. Looking back on it, I’m certain that elderly dementia sufferers would have been counted among the condemned.

After she and Morris moved from their house to their apartment, Nancy began sifting. It’s typical Alzheimer’s behavior to embark on pointless projects like turning out all the old linens, or books from the bookcase, and abandoning them half sorted on the floor. The power to organize simple tasks, like the few sequential steps that make up emptying out a drawer and restoring it to tidiness (life is all about sequential steps), is hindered and then obliterated by the advance of Alzheimer’s into the frontal lobe. The impact of frontal lobe damage is enormous. When lobotomies were commonplace, its victims became passive and easy to handle. Unfortunately, they also lost the ability to make a sandwich or tie their shoes.

Then, on one visit to Edinburgh, we found the kitchen cupboards bare. Eventually the truth was admitted to. Morris couldn’t any longer walk as far as the shop. Nancy could, but she couldn’t find it. She’d go out to get milk and bread, a tin of luncheon meat, and come back without them. Some days it took her a long while to come back empty-handed, as if she’d been lost. Nancy, it transpired, hadn’t been to the corner grocer for six months.

“Six months! But why didn’t you tell us?”

“It’s all right, though, because our neighbor does it for us, when we ask her,” Morris said.

A home help was appointed for three mornings and things were stable for a while. I took charge of their food shopping. Morris dictated his list on the phone and I organized the supermarket to deliver.

They began to be prey to unscrupulous salesmen. Morris amassed a suitcase full of jewelry and watches, bought from a “friend” nearby who
knew somebody
and appeared regularly at the door with bargains. Four televisions were purchased, two hi-fi systems. Boxes of wine began appearing, stacked behind armchairs: Morris spent thousands ordering a massage chair, then canceled it and was only partially reimbursed. Brochures for new kitchens, double glazing, time shares, and computer systems littered the house, with local agents’ names attached stapled on business cards. Rug hawkers called in unmarked vans.

Nancy continued to be busy. The bath and bed sheets were gray with grime, but the kitchen surfaces were cleaned over and over. The sink was scrubbed silver, and the dishes, greasy or not, were washed under cold running water.

Visiting with the children was becoming difficult. In the old days, Chris and I would have been able to take up the offer of an evening’s babysitting and go to the cinema. Now that had to be abandoned. We’d get back and find wakeful children crying in the sofa bed the three of them shared in the study.

“What on earth did you do?” I’d ask.

“Nothing, really. We might have been a bit noisy. We were just excited. But Granny got annoyed and Granddad completely lost his temper.” In the old days, there’d be a child-grandparental conspiracy to get us out of the apartment. It was a game we played and that we all enjoyed. Chris and I would lay down the rules—an early night, no adult TV, no sweets or fizzy drinks—knowing that flouting them was entirely the point. Sure enough, we’d get home at midnight to see children scurrying to bed, chocolate round their mouths, and hear happy giggling. But those days seemed to be over.

Nancy and Morris became isolated, cut off from old friendships. Did they jump or were they pushed? It’s hard to say. In all likelihood there was both jumping and pushing. Nancy had become a social liability and Morris, perhaps, thought himself protective of her in cutting the ropes that had so long linked them to their Edinburgh circle. For whatever reason, the Saturday night out with the gang came to a dead stop. Nancy’s oldest friend, Carol, was deterred from visiting. People were fended off and kept at a distance. Morris dug the moat and took up the drawbridge. And gradually, his relationship with Nancy changed from husband to keeper.

Chapter 9

There seems something more speakingly incomprehensible in the powers, the failures, the inequalities of memory, than in any other of our intelligences
.

—J
ANE
A
USTEN

T
HE MOVE UP FROM
E
DINBURGH WAS PROMPTED BY
health incidents. Morris had fallen several times, and on one of these occasions broken his shoulder. Nancy had been admitted to hospital twice with a blockage in the bowel, thanks to poor nutrition and dehydration. Chris found his life punctuated by panicked phone calls. The rest of us found our lives punctuated by long absences, the Land Rover roaring off late at night on another rescue mission.

There were high expectations of the bungalow. Theoretically the bungalow was perfect: two miles from us in a small development just off the center of a charming village. We were confident that this, a supervised life, would work, so the fact of its being so spectacularly disastrous was doubly surprising.

Health professionals have said to us since that it was a mistake to move Nancy to the peninsula, but they are missing the point. Moving her from the city apartment was the error. She’d moved into the apartment ten years earlier healthy, mildly impaired at worst. When she left she was ill with Alzheimer’s, but she had a residual identity there, residual mapping of her location, and this provided her with some bearings. It doesn’t really matter how many times you move an Alzheimer’s patient once functionally the hippocampus is gone. Everything is new, every day, and, living in the present tense, the best that can be hoped for is present happiness.

By the time she moved north, Nancy had lost the ability to lay down new memories, literally lost it. The hippocampus was wiped, deleted, shot through with holes. It wasn’t that she
had trouble remembering things
, a phrase easy to use but that hints at a patchy up-and-down kind of unreliability, books misfiled in the personal mental library. This wasn’t about memory retrieval, but about memory formation. It wasn’t a Romantic matter, of locked-off bookshelves and mental caverns without sunshine, but physiological and technical. No new memories could be made. Nancy couldn’t learn her new surroundings. She couldn’t map the village, nor learn the layout of the bungalow. She’d ask Morris, twenty times a day, how to get to the bathroom and where the kettle was. She patrolled the house, wearing a groove in the new carpets, wringing her hands and weeping. Every day she asked if they could go home. Morris wasn’t sympathetic.

“When will you get it into your head? We live here. This is home now.”

But that was exactly and entirely the problem. She couldn’t get it into her head. Morris spent long periods sitting in the courtyard at our house smoking, Nancy dancing attendance, asking what she should do for him and failing to carry out his instructions.

“I said my stick! My stick! I need my stick to get back into the house, not the newspaper!”

“Ashtray, Nancy, ashtray. You know what an ashtray is. Go and find Andrea. What do you mean, ‘who?’ Look, that’s her there, in the kitchen. Kitchen! Through the door. Where are you going now? The door, door! For Christ’s sake!”

“Why are Granny and Granddad always arguing?” Jack asked. “And why doesn’t Granny know what a fork is?”

When Nancy had a minor stroke and spent three days in hospital, Morris moved in with us. He sat crumpled by the fire, lamenting. “Nancy, my Nancy! I can’t lose her. She’s all I have. What will I do? What will become of me? I don’t think she’s going to make it. She’s going to die and leave me all alone.” Nancy, meanwhile, was fast becoming the ward’s most challenging resident. She heckled the nursing staff. All the doors had to be locked and windows secured because she was determined to escape. She did a remarkable impression of somebody not remotely at death’s door.

Z
OOM FORWARD A
year. It’s the end of October, our first autumn in the north, and we have friends to stay for Halloween. Nancy is a lamb. Nancy is a trouper. Nancy is conversational and light of heart. Then the health visitor drops in to see us and chats to Nancy, and Nancy handles this magnificently—seems actively, intently to be
handling
it.

“How are you, Nancy?” the health visitor asks.

“Can’t complain,” Nancy says. “Well, I could complain, of course, but I won’t.” (Laughter.) Wit will always win the argument. “And how are you, yourself?” she goes on, all frowning and earnest solicitude. “Are you keeping well? You’re obviously very busy. But keeping well, I hope.” The health visitor is charmed. The health visitor, on her departure, is heard to use the word
sweet
. Instinctively, provoked by the institutional air and antiseptic smell of the visitor, Nancy knew she had to perform well and Nancy dug deep. The health visitor was managed. She was wrangled. This seemingly contrived approach to social situations is a new feature in Nancy’s decline but also, it turns out, classic Alzheimer’s. The American dementia blogs, particularly, are full of astounded remarks about severely ill and abusive relatives being winning, engaging, almost like their old selves when doctors come to call.

Dramatic news from the hospital: Morris needs a second operation, having dislocated his hip while recuperating, probably through inadvisable crossing of legs. He’s sent back to the city, the rest of us into despondency.

November 5 is the windiest Guy Fawkes Night we’ve ever seen. We abandon the idea of the traditional bonfire (though we’ve never made and burned a puppet Guy Fawkes to go on the top, so it wasn’t ever that traditional), and then even the packet of sparklers is judged too dangerous to use. The gale blows and howls round the eaves and the heating’s snuffed out. It’s 7:00
P.M.
Up the back stairs, in the guest apartment, the last B and B guests of the year have retreated to bed and are watching a DVD from under the duvet. The wind roars down the chimneys and the drawing room is full of smoke. It appears to be windy
inside
the house. The next morning, our visitors attempt to walk the beach in a sandstorm, though summer’s lovely strand is kelp and refuse scattered. They attempt (inadvisably) a walk on the cliffs. They go out in the car for lunch and come back soaked to the bone. They are relieved to go home.

The north of Scotland needs a broader vocabulary for weather, such as the Inuit are said to have. We need thirty words for wind in all its variations. Its principal variant is aggressive. It slams. It blows dog ears flat, knocks children over, gets into a coat and sends it soaring. It’s best not to open an umbrella unless the full Mary Poppins experience is desired. It forces entry into the esophagus, making breathing feel like work. Hats become offerings. They’re whisked away, dropped into far fields, into the sea, off cliffs, deposited muddily on roads awaiting their next victim. An old scarf, very long and broad in a brown check, has become my constant companion. The scarf is applied to the head, wrapped securely and tied at the neck. Scarf, long waxed coat, Wellies: I don’t leave the house without these three items. It’s my new silhouette. A Barbour bag lady.

In late November, we wake after a stormy night to find that an enormous chunk of the flower garden wall is missing, some twenty feet across and eight feet high. Sheep were sheltering behind the wall and two of them were killed, crushed under falling stone. The farmer comes round to see us. His reputation has preceded him so we expect to be presented with a bill, or with some cunning and unusual revenge. Instead he’s philosophical. These things happen. He won’t hear of payment. He helps stack a delivery of hay bales into the barn, and goes off whistling.

I start writing in bed, late at night and very early in the morning, the rest of the household asleep. In daylight hours it’s proving impossible, that is, until 4:00
P.M.
when the cavalry arrives, disheveled and hungry with schoolbags on shoulders. I leave toast-eating granny-sitters in charge and sneak off to get on with things. It doesn’t work. Nancy comes shuffling in after me.

“Excuse me, lady. I’m sorry to bother you, but I need to ask you something. Have you seen my husband?”

I close the laptop lid and we have the conversation, the full-length one that reprises her life so far, her marriage, her children, her retirement from work, her move here, and Morris’s accident.

“Oh,” she says. “I wasn’t told any of that. Would be nice if people told me things.”

She shuffles out. Then she shuffles back. “Excuse me, lady, I need to ask you something.…” It all begins again, an almost word-perfect repetition. The only way out is to hide, and we take turns spending prolonged periods secreted upstairs, where Nancy doesn’t go; she has developed a fear of stairways.

My transformation into her mother is complete. She wants to be where I am. If we’re apart for more than a few minutes, she begins to fret. When she finds me in the drawing room her voice is full of relief.

“Ahh, there you are, I was worried.”

I explain that I’m trying to get a few minutes’ peace, reading a book by the fire. Would she like to sit with me and look at a book?

“Yes, I’d love it. I’ve been all on my own, nobody speaking to me at all.” She then proceeds to free-associate. I put the book down.

“Okay, but as I say, I’m trying to read just now, so … Listen, do you think you could mind the children for me for a while?”

“Oh yes, I’d be happy to. Where are they?”

I take her back to her sitting room and introduce her to her grandchildren, whom she greets as if for the first time, introducing herself conscientiously. Then I rush back to the fireside and the novel, knowing I have seven or eight minutes until she shuffles in again.

“Ahh, there you are, I was worried.”

E
MOTIONAL, SUBCONSCIOUS ASSOCIATIONS
are in the ascendant. She can spend all day bearing a grudge and render the consolations of the afternoon film useless by monologuing over the top of it. And the delusions are beginning. Nancy’s chief delusion is that she’s in charge.

“Nobody ever talks to me here. Nobody pays any attention to me at all. I may as well be dead. People are always telling me what to do
—me!
And I own this house. They work for me. They all work for me.” Jack comes into the room and then retreats again. “Those horrible children laugh at me and call me names behind my back.…”

They go on and on for hours, these monologues. Luckily a response isn’t expected. It’s more in the way of a performance. I am learning to tune her out. I do the ironing standing in her sitting room and train my mind elsewhere, while Nancy sits and narrates her way through a series of grisly daytime TV programs.

Eventually even television fails. Jack, trying to tell her not to go outside because it’s raining, is called a bastard and then a bitch for good measure. It’s difficult to convey just how sinister these verbal attacks are, so out of the blue and so quietly passionate, her expression so malevolent. They wrong-foot all of us emotionally, but the children especially, who are shocked by the suddenness with which the mood turns. I understand their tears and hurt. It’s like having your face slapped, is very like it, by someone you thought was on your team—slapped hard and unexpectedly.

There’s an upset almost every afternoon, and because it’s the children under attack and nothing else is as provoking as a bully, I find myself yelling at her, Nancy yelling back. I contrive to do this when there are other people in the house, friends of the children or plumbers or electricians, the tradesmen pausing to listen, shocked rigid by the shouting. “Listen to that! She’s screaming at her poor mother-in-law, that sweet, gray-haired old lady!” They’re rooted to the spot. Visiting children turn wide-eyed and silent as I rip out of the kitchen and tear a strip off Granny. Nancy denies everything, always. “I did not. Did not. Did not. That boy is a liar. A liar, always a liar, a nasty little liar, telling lies. It’s all lies and rubbish.”

I can’t help myself from insisting that she is wrong and that she’s behaved badly. I can’t seem to stop myself from insisting she change her ways. Why do I waste my breath? Morality, misplaced and useless, is at the heart of it. Families are constructed from a shared sense of justice, and sail out on its complicated hidden currents. The children have been indoctrinated in the ways of fairness. Granny’s dementia smashes right through their early training and leaves a trail of moral wreckage that constantly needs to be accounted for.

Help is close at hand. The Charity. The Charity employs people to provide short home-based bursts of respite care. The dictionary defines
respite
as an interval of rest and relief, but we define it as time to act, to move and act unhindered, to resume life, if only for the short period in which someone else is in charge. If it wasn’t for The Charity, many families would have no home-visit respite at all. We are offered two sessions a week, on Monday and Wednesday mornings. The Monday caregiver, Sian, a Rubenesque Essex blonde, deals with Angry-Nancy by imposing routine on her. The routine is a brisk itinerary encompassing hot shower, hairstyling, car trip, shopping, coffeehouse, and home. The Wednesday caregiver, Harriet, on the point of retirement herself, is a lithe, warmhearted northerner with kind blue eyes. If Sian’s approach is dogged, unemotive, unflappable persistence, then Harriet’s is more in the way of love-bombing. “Come on now, lovey, you can put your shoes on yourself, a big girl like you.… Yes! That’s right! That’s brilliant. Clever girl.” The only thing Nancy really doesn’t like is the packet of felt tips Harriet brings with her, and the bumper book of coloring, featuring girls with lambs and flower baskets, and elephants in lederhosen driving cars. Nancy can’t color inside the fat black lines and doesn’t see why she should try. Once Harriet is waved off on Wednesday lunchtimes, the pages left behind for Nancy to finish are verbally abused, ripped into pieces, and thrown in the fire.

T
HE
C
HARITY MANAGER
is on the phone, asking how things are going with the caregivers, and I am properly grateful but frank about Nancy’s bitter mood swings. “You’ll need to think about residential care at some point,” she says.