“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.
ZOOM 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.”
EMOTIONAL, 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 outsi
de 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.
THE CHARITY 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.
“At some point,” I agree, “but we’re hoping that Morris’s return will restore the equilibrium. We should have a few years in the arrangement yet, I hope.”
“You should talk to the social work department,” she says brightly. “You could get some more help. You could get a care manager to coordinate everything.”
“I’m sure,” I say, “but we’d really rather not institutionalize things or get too many experts wading in. We manage fine. We struggle along.”
The following week, we admit our first expert to the house. He talks briefly to Nancy and at length to the two of us and convinces us that joining in is possible as a nonjoiner, in situations like this. Chris and I are reluctant. We don’t want to be part of the care machinery and enter the social work filing system. We don’t think Morris would want it, either. How will he react, in any case, on his return, to the new Nancy that Sian and Harriet have created, the one that’s talked to as if she is five and behaves accordingly? How will he deal with their taking charge of Nancy and redefining her, leaving him a helpless witness?
“We’ll leave things as they are for now,” the expert says. “But what I can do for you is organize a program of nursing home respite for next year. You’re entitled to six weeks. I’ll book Nancy in for six separate weeks, and I’ll be in touch with dates.”
Chapter 10
Ich hab mich verloren.
—AUGUSTE DETER, THE FIRST CONFIRMED CASE OF ALZHEIMER’S DISEASE
ALZHEIMER’S DISEASE IS NAMED AFTER A GERMAN psychiatrist and neuropathologist. In a lecture in 1906, Alois Alzheimer reported seeing the characteristic plaques and tangles in the brain of fifty-five-year-old Auguste Deter, a sufferer of early-onset disease who’d died earlier that year. “Ich hab mich verloren [I have lost myself],” she had said to Alzheimer, when first she was admitted to the Frankfurt asylum at age fifty-one.
Alzheimer didn’t discover the disease as such. It had been observed and written about before, notably by an early brain researcher named Beljahow, who reported brain plaques in dementia in 1887. Likewise, the presence of tangles had been announced by other neuroscientists before Alzheimer gave his lecture, but nothing formal had got into the textbooks. What was remarkable and newsworthy about Auguste Deter’s case was her disease’s very early onset. This helped make a splash. It was a sensation. Publicity was the key. Alzheimer’s boss, friend, and coresearcher, Emil Kraepelin, happened also to be a powerful figure in neurology and in science publishing. Today regarded as the father of mental disorder classification, Kraepelin named the disease Alzheimer’s in 1910, in the course of a description in his new textbook. He did so almost casually, in a paragraph of notorious vagueness, referring to “this Alzheimer’s Disease,” a reference that surprised his readers and colleagues. To quibble, the label Alzheimer’s ought in all justice to have been confined to the early-onset variant only, since that’s what the Auguste Deter research was concerned with. It’s also interesting to note that Alzheimer himself didn’t think the late-onset condition ought to be classified as a disease as such. It was his contention that Alzheimer’s happens to all brains in the end—they wear out, like hips and knees—it’s just the speed and volume of plaque growth, he argued, that marks the syndrome out. The speed is remarkable. Neuron loss in Alzheimer’s has been calculated as ten times the speed of that entailed in normal aging.
A sense of theater, a gift for PR, the pressing financial need to impress funding bodies: It’s suggested that all these led Kraepelin to make Alzheimer the eponym. Kraepelin’s battle with his great rival Sigmund Freud, as to whether such disorders were organic or psychiatric in origin, was another factor; Alzheimer had been supportive in putting Freud in his place. It helped that Alzheimer’s time was one of diagnostic breakthrough. Modern Zeiss microscopes (the original slides have been discovered and preserved) and the advent of silver nitrate tissue-staining process (the innovation of Alzheimer’s colleague Franz Nissl), which illuminated slices of the brain as never before, meant Alzheimer’s work had the benefit of technological advance over that of his rivals.
Alzheimer had left Frankfurt and was working for Kraepelin in Munich by the time Auguste Deter died in 1906. Her brain and spinal cord were sent to him by train in a box.
Her case was unusual and even today would be regarded so, not only because she was so young—fifty-one is very early onset and fifty-five a very early dementia death—but also because it came on so aggressively and fast. The polite confusion she showed on admission very quickly declined into raving and wailing and wordless wounded animal misery. A stark black-and-white photograph of her while in the asylum shows a woman who appears to be in her seventies, her brow furrowed into deep ridges, her face ra
vaged and baggy, a bewildered look in her eyes.
ALZHEIMER’S OWN RECORD of their first conversation survives. He writes that she looks helpless. He asks her name.
“Auguste,” she tells him.
“And what is your husband’s name?”
“Auguste.”
“Your husband?”
“Ah, my husband.”
She doesn’t appear to understand that it’s a question.
“Are you married?” he persists.
“To Auguste,” she says.
“How long have you been here?” he asks her.
“Three weeks,” she says with confidence (though in fact she was admitted the day before).
She can still identify a pen, bag, key, diary, and cigar.
She is given pork and cauliflower for lunch, but when asked what she’s having, answers “Spinach.” When asked again she says, “Potatoes and horseradish.”
He notes that objects shown to her are forgotten about almost immediately. In between she seems to have an obsessive interest in twins.
He asks her to write her name. She starts to write “Frau” and then gives up. Several attempts are made to write Auguste. First Augh. Then Auguse D, leaving out the t. That evening, Alzheimer writes, her conversation is full of non sequiturs and obsessive elements like perseverations, in which sufferers return to a subject, an idea, a phrase, again and again without making their meaning clear. (It’s not so much that they persevere with a subject, but that the subject perseveres with them.)
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