Keeper

by Andrea Gillies

  The current drugs work by targeting the synapses, the gaps between neurons through which all information must pass if a brain is to function. To cross the synapse the electrical impulse becomes briefly a chemical entity, a neurotransmitter. It’s as if lorries bring goods to the port and unload them briefly onto ships to cross a river to the other side, where other lorries wait to be loaded for the next road journey.

  Of the four Alzheimer drugs currently prescribed, three of them—Aricept (donepezil hydrochloride); Reminyl, known as Razadyne in the United States (galantamine); and Exelon (rivastigmine)—work as acetylcholinesterase (AChE) inhibitors. (The first of this class of drug to be launched in the United States, Cognex [tacrine], is now used only rarely because of the severity of side effects.) AChE is the enzyme that breaks down the neurotransmitter acetylcholine, getting rid of it once it’s been used so that fresh neurotransmitter can be produced. In Alzheimer’s fresh neurotransmitter isn’t being produced as much, so the drugs work by keeping the old stuff going for longer and preventing it from breaking down. A fourth drug, a newer one called Ebixa, also known as Namenda (memantine), which may herald a new generation of drugs called NMDA receptor antagonists, blocks the overproduction of another neurotransmitter called glutamate, a glut of which causes cell damage. U.S. studies have found that Ebixa can be taken with one of the other sort of drugs to beneficial effect, but this, of course, is an expensive approach, and the UK National Health Service is unlikely to go for it. (More important, I’m told that its early promise has come to naught and it isn’t much good anyway.) Additionally, it seems that these Alzheimer’s drugs are proving in clinical practice to be quite good with other forms of dementia, specifically with suppression of bizarre behaviors, and are beginning to be used in place of antipsychotics. Antipsychotics are widely overprescribed. There’s no doubt that in many cases dementia patients in homes are given them in order to make the staff’s lives easier. It’s estimated that around 100,000 people in nursing homes in the United Kingdom are misdosed or overdosed in this way, and many more in the United States, despite regular outcries in media such as the New York Times: people rendered doped-up and compliant. There must be a great many more on the drugs cared for at home, thanks to doctors’ prescriptions. The legitimate use of antipsychotics may be helpful in moderate doses for particular problems in dementia, but there’s no doubt they impair thinking and speaking abilities. In addition, it’s estimated that 25 percent of those taking them will die prematurely as a direct result. Stroke is a particular risk.

  By 2012 there should be another name on the market, to add to the Big Four. The benefits of Rember (methylene blue) have been the cause of excitement among those involved in the trials. Methylene blue isn’t, it seems, a new drug at all, but one new to the treatment of Alzheimer’s. It appears to be effective as a tau protein inhibitor, attacking the tangles. Unfortunately, it’s likely that political questions, having to do with who will get it and how much it will cost, will shadow its UK launch publicity. Plus, it remains to be seen how effective the wonder drug will be in real time and on actual humans. As someone working in the field told me, “Brains are so blooming complicated that the potential benefits from drug effects are often not really well understood for years after the drug hits the general market and doctors in ordinary places on earth (as opposed to research clinics) get to use them routinely.”

  Until then, only the usual pharmaceutical suspects are available. It’s no wonder that people look for alternative approaches, ginkgo biloba, fish oil, folic acid, turmeric (curcumin), and HRT (hormone replacement therapy) among them. The medical establishment is trying to think laterally. Blood pressure medications and cholesterol-reducing statins have shown promise. Great things are claimed for vitamin E, which in vast doses has been shown to slow the disease, though other studies pinpoint vast doses of vitamin E as a killer. Anti-inflammatories like ibuprofen may slow or even prevent Alzheimer’s; inflammation in the brain is a busy area of research. More cheeringly, it seems that one generous alcoholic drink a day may be protective. Some little-publicized research has shown that smoking might, also. Of course, at this level of selection, it’s what you die of that becomes the issue.

  I wonder now how many years Nancy was having problems before memory loss became obvious. Was there an even longer, slower fade than we thought? She’d not wanted to deal with meals and cooking for years, had been strongly averse to supermarket shopping for many years before that. Nancy’s known for hating supermarkets. Is that where it started, that first tickle of dementia—in not being able to deal with the navigational demands of Safeway? Recently researchers have pinpointed the entorhinal cortex, which feeds into the hippocampus, as the more exact starting point of Alzheimer’s in the brain. There isn’t merely memory consolidation at stake in the entorhinal zone, but also mapping, mapping the location of objects in relation to the self. Alzheimer’s may announce itself with navigational problems rather than memory loss as such.

  It has the subtlest of beginnings, fuzzy and subjective. There’s no absolute starting point. It doesn’t start with pain, a suspicious lump, blue spots, an attack. It’s easy for dementia to be self-diagnosed, or even medically diagnosed, as something else entirely. Natural aging. Middle-aged confusion. Senior moments. The doctor confesses he forgets just as easily and is just as erratic—him, at only fifty-six—and not to worry, and it’s hard to argue. It’s a creeping illness. It creeps up on people. People get used to their own very slow changes and make allowances for themselves. It’s possible to muddle through life with conviction and survive perfectly well as a muddler, and among the elderly it’s considered reasonably normal. We use words like dotty, and smile about it; being in a muddle is often endearing. MCI, mild cognitive impairment, is after all only mild, and only an impairment: It doesn’t sound too threatening.

  In his account of the seven stages of Alzheimer’s, the behavior-based guide to severity devised by Dr. Barry Reisberg in the United States twenty-five years ago and still widely consulted, other people notice the changes only when they’ve reached stage 3. Stage 1 has no impairment evident. That’s the slow burn. Stage 2 is the dotty stage, with intermittent memory lapses (and intermittent anything can be explained away), forgetting where you put things, forgetting words and names. Described like that, most of us post-forty-five could, with the aid of hypochondria, believe ourselves at stage 2. Stage 3 has taken us only as far as MCI, when others begin to notice something amiss, and less endearing kinds of muddle arise—trouble retaining information, with short-term memory, with reading and organizing. We’re still on the fringes of what we’d consider normal for the elderly in stage 4: trouble talking about world issues, trouble with mental arithmetic, trouble with trivial activities like making supper—these in themselves may not ring alarm bells. And yet it could have been ten years, the road from stages 1 to 4. Someone’s had Alzheimer’s for ten years and nobody’s yet recognized it.

  Stage 5 is considered the first of the three obvious dementia stages. At stage 5 help is needed. The sufferer might forget his own address, phone number, the names of family members, and be hazy on major autobiographical events. He begins to lose his grip on what day, month, year it is. He may need help with dressing. At stage 6, there are noticeable personality changes in play. The sufferer loses a coherent sense of his environment, is cut off from his own history, may not recognize his spouse. All of this brings fear, and in its wake, aggression. The person needs help with all domestic tasks, including toileting. There may be some incontinence. Wandering becomes an issue. Delusions and hallucinations may begin or worsen. He may talk to himself in the mirror and adopt compulsive behaviors.

  Stage 7 casts the darkest shadow. The sufferer loses the ability to talk, walk, eat. Gradually he becomes bedridden, immobile, and helpless. The horrific thing, should we dwell on it too long, is that stage 7 has been known to last for six or more years. But not everybody gets to stage 7. These markers are, remember, just averaged out, just the rule from whi
ch exceptions spring.

  Ralph Waldo Emerson (1803–1882) was an example of the long, slow fade. The American poet and essayist died of dementia (probably Alzheimer’s, which is the only backdated diagnosis possible), a fate he’d already recognized by 1866, the date his son gives to “Terminus,” which begins:

  It is time to be old,

  To take in sail:—

  The god of bounds,

  Who sets to seas a shore,

  Came to me in his fatal rounds,

  And said: “No more!

  No farther shoot

  Thy broad ambitious branches, and thy root.

  Fancy departs: no more invent;

  Contract thy firmament

  To compass of a tent.

  Emerson would live for another sixteen years after writing this. The epigrammatic and quirky nature of his transcendentalism helped disguise his affliction until very late. Mark Twain famously made fun of him in a speech at a dinner five years before Emerson’s death, parodying one of his poems, not realizing he was ill (though, in fact, Emerson was by then far too ill to take offense, as his daughter explained in a letter). Robert Graves (1895–1985), poet and author of I, Claudius, had an even slower fade. It’s said by his friends and biographers that his dementia was apparent even in the 1960s, though he masked it well with outrageous eccentricity. Among elderly artists and writers, there is sometimes a difficulty in knowing where art stops and Alzheimer’s starts. Graves became passionate about astrology and bowed to the moon. He became convinced that he was the mortal mouthpiece for the White Goddess. He was ill for a long time and spent the last decade of his life virtually in silence. Dementia took its time.

  It’s an oddity of the disease that the first phase can present itself quasi-positively. Sufferers may not be seen to be suffering. They might seem to be happier. Among the great ocean of Alzheimer’s writing online and all its many miseries, there’s the occasional early-diagnosed commentator, reporting on experiences in a way that seems near euphoric. People with early Alzheimer’s have reported a heightened sensory experience of life: Perhaps the senses sharpen as the thinking and remembering self begins to dwindle.

  THIS GIVES ME an understanding of how it seemed with Nancy in the mildly muddled early years. Nancy seemed a happier person and more relaxed. She made more of a fuss over her grandchildren, especially her toddler grandson, apple of her eye. The children were greeted with outstretched arms and Jack was invited onto her knee shortly after. The granddaughters were allowed to take Granny off to the bedroom and give her a full makeover. She’d return merrily in odd combinations of evening clothes, her hair stiff with gel, wearing stripes of blue eye shadow and heavily rouged.

  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.

  —JANE AUSTEN

  THE MOVE UP FROM EDINBURGH 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 b
owel, 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.