Keeper: One House, Three Generations, and a Journey Into Alzheimer's (9 page)

“Between you and me I think they’re all the same, except that some of the expensive ones are terrible, too busy trying to do other stuff to your hair to clean it.”

“That’s very true,” Nancy says.

“So why don’t you just pick the prettiest?” I say to her.

She starts to laugh. “No, no, I couldn’t.”

“Go on. The prettiest bottle.”

She stands with her hand raised, looking embarrassed. She seems to find it impossible to make a choice, or understand what choosing is. Perhaps memory is essential for selecting. How else do we know what we like?

“Just choose one. Anything. Whatever appeals.”

She begins to mutter to herself. Her blush deepens.

“What about this pale blue one?” I say. “You like blue.”

“Oh yes! That’s wonderful.”

We pay for our toiletries and Nancy tells the checkout girl that she has lovely hair. She reaches out to touch it but I intercept her arm and hold on to it.

In Woolworths, while I’m buying magazines and having a look at the latest films on offer, Nancy wants to talk to small children. Preschool children, little girls in pink anoraks, small square-jawed boys with buzz cuts and suspicious eyes, hang on tighter to their mothers as Nancy stalks the aisles looking for somebody of three or four to talk to.

“Look at you, you totey wee thing,” she says, bending to smile her toxic-toothed smile. A little girl with fair curls smiles back, twisting her Barbie in her hands. Nancy reaches out. “Can I see your dolly?” The Barbie is handed over. “Oh, look at this, she’s absolutely beautiful, look at her gorgeous dress.” Nancy beams.

“I’m buying her a new dress,” the poppet squeaks.

“Kelly! Kelly!” The mother approaches, looking alarmed. “Come on, I said.” Poppet is dragged off unwillingly and we hear her mother saying, “I told you not to talk to strangers. How many times have I told you?”

I leave Nancy choosing a chocolate bar and go to get a magazine for Jack, and when I come back, I find her standing by the pick-and-mix with a fistful of truffles, mouth working furiously, three gold sweet papers at her feet.

Obviously, this is a very minor kind of criminal behavior (though I’m glad that the staff here know us, nonetheless), but the principle that makes Nancy feel entitled to the chocolates is one that’s dangerous to apply to life in general. The loss of frontal lobe wisdom, moral sense, any kind of brakes on her impulses: It might just as easily apply to a soft-top car, a diamond bracelet, somebody’s baby in a buggy. For Nancy, everything is available. It’s fair game. If she wants something she takes it. And she believes that everybody in the world operates that way. The idea of ownership is gone, which isn’t to say that she doesn’t assert that things are hers and hers only; what’s gone, specifically, is the idea of other people’s ownership of things she might want for herself. This is becoming a problem in the United States, where the huge number of Alzheimer’s sufferers means that the legal system is having to grapple with issues of culpability surrounding dementia-sufferer crime. It’s a thorny problem. If repeatedly you steal things because you no longer understand what stealing is, what is the state to do with you? What can the mechanics of civilian control do with otherwise fully functioning and peaceable adults who can no longer be reasoned with?

Nancy’s hesitant, out on the street. She doesn’t like the paving stones, carefully avoiding the cracks, looking down and adjusting her feet as she goes, first with small steps and then at a stride—an inconsistency that is tricky when your arms are linked together. She no longer deals well with changes of level, either, hesitating before going up or down from road to curb. At home, she has developed a thing about the black-painted slate floor in the back corridor, pausing as she comes off the carpet and dipping a toe in the “water” first. She thinks it’s going to be wet. Sometimes she thinks it’s a hole and I have to go first.

If it’s blowy on the high street she hangs on to her hat, laughing near hysterically. We go into the council-run coffee shop, the Victorian Gothic ex–council headquarters, and eat a subsidized bit of apple pie with scalding weak coffee. Nancy likes it in here. She eats her pie with relish and licks the plastic container.

She’s happy in town. It’s when we get back that the trouble starts. She has no memory of being here, but emotional associations with things remain, subconscious associations, and Nancy’s begun to associate the house with incarceration. Her spirits wilt visibly as she trundles back into the kitchen, and is steered toward her sitting room. She doesn’t want to take her coat off or her shoes. She retreats to her bedroom, putting her bathrobe on over her coat. I go and crouch at her knee and take her hands and look up at her. She looks angry.

“Don’t speak to me. Don’t say a word,” she growls.

“What’s the matter?”

“Nobody talks to me. Nobody wants anything to do with me. They invite me here but then they ignore me. I’m going to take my things and go.”

“But Nancy. We’re your family. We look after you.”

“You DO NOT.”

“But Nancy. You don’t know where you are.”

She laughs mirthlessly. “That’s what you say.”

“Okay, then.” My dander is up. The apple pie will go unrewarded. No kindness will go unpunished.

“Tell me where we are, then. Go on. Tell me.”

She looks out the window. “We’re here, of course.”

“But where are we?”

“Edinburgh.”

“We’re not in Edinburgh.”

“Well, you aren’t.” She puts great emphasis on the
you
. Is this a metaphysical point? I wonder. “I’m going home,” she adds.

“How are you going to get home?”

“I’ll be fine.”

“It’s a two-mile walk to the village bus, and even then …”

“Well, that’s me, then. I’ll say good-bye to you.”

I follow her out. She’s standing in the yard, looking in astonishment at the great open garden, the wall, the sea, the sky. What must it be like, to be as sure as you can be sure of anything that you’re awake and in your own city, and open the door and find the ocean there?

“Come on, let’s go in, it’s starting to rain,” I say. She follows me meekly indoors.

N
ANCY’S MOODS TAKE
a decisive downturn. Daily she tells us that none of us love her, that none of us like her, that none of us want her here. We spend a lot of our weekends trying to convince her that she’s wrong. Trying to convince somebody that you love them is exhausting work. Particularly when you need to reiterate it all, almost word for word, twenty minutes later. Chris takes on the job of trying to distract her at the weekends so that I can have a break. But, of course, I feel terrible, sitting by the fire with the Saturday papers and hearing it all going on. I go into the kitchen to make coffee and find the two of them, Chris and Nancy, sitting at the table making soup. Nancy has her own chopping board, her own knife, and is busy mangling a potato. Chris is saying, “The thing is, Mother, that we don’t ignore you on purpose. The thing is that we all have busy lives, and things we want to do. We both have to work, we’re working people who have to make a living in order to pay the mortgage on this big house and look after you. And when we’re not working, we have other things we want to do sometimes. We want to go out, and spend time with our children, and paint pictures, and read books. We can’t be sitting with you talking every minute of the day and you have to understand that.”

Nancy says nothing, her knife jabbing at the potato.

Later on, when everybody is called for supper, Nancy refuses to get out of her armchair.

“I’m not coming.”

“Supper time. Soup and lovely homemade bread and apple pie. You helped make it, remember?”

“I’m. Not. Coming.”

“Aren’t you hungry?”

She looks at me, takes a breath. Thinks better of it. Then takes another.

“I know very well what you’re trying to do. You’re trying to get me out of here.”

“That’s right. It’s supper time. It’s just through there. That door. The kitchen. Your food is waiting for you.”

“I know very well what you’re doing. I’m not allowed out of here. I’m to stay here. I’ve been told that I’m to stay here and not move. I’m not to move a muscle. I’m not allowed in there, oh no, that’s what she said, she said I was to stay put and not move. The people who own this place told me that I’m to stay right here and
I’m
not allowed anything to eat at all.”

Scraps of information in Nancy’s paranoia are traceable. I do tell her to “stay there” when I go off to get her supper. I do tell her she can’t have a whole tin of shortbread to herself, that she’s not allowed it (especially not five minutes before supper). These oddments get mangled, garbled, by the disease. Jigsaw pieces that don’t fit are forced together to make a whole new picture.

I take her supper to her on a tray. The rest of us eat our dinner in silence, subdued by the outburst, hearing Nancy telling her soupspoon her troubles.

When I take her coffee in, she is crying. I crouch by her.

“What is it? What on earth’s the matter?”

“It’s nothing,” she sobs. “Nothing at all. Just people being nasty to me. It’s always happened so I shouldn’t be surprised.”

“What people?”

“Not you. I’m not talking about you. You’re very nice. You’re the only one that’s nice. The rest of them are nasty to me. And they laugh at me, those nasty children. They laugh at me behind my back.”

I can feel my hackles rising. “Don’t you dare talk about my children that way,” I say hotly. “Those are your grandchildren, and one of them, your grandson, tried to help you today and you called him an arsehole.”

The idea of Nancy calling anybody anything remotely this rude is pretty funny, in retrospect, but it isn’t amusing at the time.

“Granny’s gone to the dark side,” Jack warns his friends when they come to tea. Jack and his friends can handle it, raising their eyebrows at each other and making themselves scarce, but I am a lot less sanguine.

I’ve wondered, since this period, whether Nancy was bullied as a child. Whether long-term memory is creating long shadows in her dealing with children, now that she’s ill. Her grandchildren are indescribably sweet and tolerant, rushing to her aid whenever she’s troubled, trying to anticipate her needs. So either the brain is inventing maliciously—can misfiring neurons be said to be malicious?—or there’s something from the past that’s got mixed in, released by the subconscious and bobbing to the surface.

Nancy’s wandering at night, presumably looking for Morris. I am dimly aware of this, surfacing from sleep half a dozen times, aware of noises below. Doors opening and closing. Someone talking. But I can’t wake myself up enough to go and do anything about it. When we come down in the mornings we find all the doors open, things rearranged, piles of Nancy’s clothes on the pool table.

Chapter 8

Trust the instinct to the end, though you can render no reason
.

—R
ALPH
W
ALDO
E
MERSON

N
ANCY AND
M
ORRIS HAVE HAD FIVE PROPERTY STAGES
of life, which have mirrored what you might call the Five Ages of Nancy. These have been, in brief, apartment-house-apartment-bungalow-us. Property number one, the original apartment, was part of a period-house conversion in the city. They bought it before they were married and worked on it on weekends leading up to the big day. They graduated to property two, a stone-built row house at the end of a row, with its family bedrooms, little garden, handiness for the park and the primary school, as a prelude to the adoption of two children, first Chris and then his sister, who lives in Canada with her own young family and is rarely in touch. Downsizing to number three, a ground-floor retirement apartment, came at the point at which there were young granddaughters, and Morris could walk only with sticks. They were intending to stay at property three for the rest of their lives, but there were two other unexpected moves to come, as a response to encroaching dementia. Three, if you count the nursing home.

Alzheimer’s crept up slowly, like Granny’s footsteps in the game “What Time Is It, Mr. Wolf?” (Mr. Wolf isn’t sure. Mr. Wolf has forgotten how to read a clock.) The first obvious clue was the classic one: forgetting things, being
absentminded
. “Where are the keys? Where?
What
clay pot on the dresser?” But then, over three, four years a bad memory became something else. Nancy needed reminding about money and its rudimentary mathematics, how the door opened and was locked, and about things we’d just talked about. Eventually, under pressure, she saw her doctor and ended up at the memory clinic at the hospital. We’d had no encounters with dementia before, and stupidly we failed to realize that
memory clinic
is a euphemism. We’d ask, on the phone and on our visits, how things were, what the clinic had to say, but Nancy was vague and Morris studiedly vaguer. “I think she’s getting on fine, though her memory’s terrible. They’ve put her on some pills.”

The pill, it turns out, was galantamine. Alzheimer’s wasn’t mentioned. It was on her file, though. A later doctor would mention it almost casually, would see our faces, would be shocked by our not knowing. “It helps with memory loss” was all that was said at the time, about the prescription; a fudge enacted by the clinic for an anxious spouse’s sake, perhaps, or, more disingenuously, by Morris for ours. There’s no cure for dementia. There’s no partial cure. All that’s available is a slowing down of the symptoms of fire damage. Sufferers’ experience of the drugs available is patchy and inconsistent. They don’t work for everyone. They’re hit and miss, and usually only of short- to medium-term use.

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 which 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.

T
HIS 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.