Keeper: One House, Three Generations, and a Journey Into Alzheimer's (18 page)

I am out in the garden tackling the weedy borders and planting new shrubs quite a bit of the day, having abandoned the novel, again. It isn’t something I’m happy about. It’s not been a matter of choice, but writing isn’t possible with Nancy on the rampage and the constant interruptions. Nor is writing possible when so much unhappiness is at large. Nancy’s. Morris’s. My own. So instead of struggling on, there will be reading and gardening and strategies for psychic survival. Weeding is good for impotent rage. Old neglected borders full of grass and dandelion are gone at with energy. I take Nancy into the garden with me for part of the day and try to filter out her wittering, and try to be calm about her standing in the middle of the flower beds, trampling new plants. Her white skin is sun sensitive and burns in a trice. She is dressed in her customary elastic-waist slacks, a long-sleeve cotton shirt, and a wide-brimmed hat. She smiles, when she’s outdoors. There’s Nancy in the photographs, flushed pink and grinning. It’s indoors that she hates, the terrible boredom of indoors. Outside, she gets all my attention. And maybe it’s more than that. Perhaps it’s Nancy who’s found a relationship with the Sublime.

Clinging to the idea that we ought to make her days as fulfilling as possible, and having given up on work for now, I try to include her, like mothers of preschoolers do, in the daily domestic tasks. It’s exhausting work: “Now here’s your peg, here’s the sock—see, you open the peg like this and put it on the line and when you let go it grips it. See? No, don’t put them all on top of one another, they won’t dry. Ah no, see, you’ve got the peg upside down, that won’t work.” On Mondays, when Morris is out at the day hospital, I make a special effort. Then, having spent five unbroken hours together, I put her in her chair and go to make her a coffee and when I get back she is purple-faced with rage.

“I’ve been left here all day on my own! People have been going by and not speaking to me! If I’m not wanted here you had better just say so!”

I’ve been reading a book that claims to explain consciousness and its neurological mechanisms as something entirely animal. The writer pulls off the disarming logical trick of spending the entire first chapter disparaging Descartes, and the rest of the book coming face-to-face with a series of pro-Descartes (Cartesian) scenarios—suggesting in their various ways that there
is
a ghost in the machine, operating the machinery—and dealing with them, one by one, by pointing out that since Descartes must be wrong, because his ideas are preposterous (a favorite authorial word), there must be some other explanation. It is, weirdly, a book that seems unconsciously to be prey to subconscious tides pulling its conclusions in opposite directions to those intended.

I also come across some rather startling research to do with the electrical impulses that carry information between neurons. Apparently, studies of the
action potentials
have found that they fire up
before
we decide they should be doing whatever it is that we’ve asked of them: for instance, to turn a page or flip a fried egg or pick up a stone on the beach. Experiments showing this to be true were begun by the research scientist Benjamin Libet in the 1970s, and continued in 1985 in a scientific trial done with people who flexed their wrists at will and signaled the moment of deciding by marking the position of a rotating disk. Extraordinarily, it was discovered that the appropriate neurons fired up a full half second before the moment the subjects “decided.” The interval is known as Libet’s delay. In terms of the speed of the electrical impulse, a half second is a very long time. What seems to be happening is that something below or aside from consciousness is making decisions before we think we are making decisions. Something else in us, backstage of our deciding, appears to be deciding before we decide. It reminds me of a British TV series called
Yes Minister
, in which civil servants manipulate a member of the government, convincing him that he’s in charge when the truth is that the real decision making is going on elsewhere. In April 2008, an experiment using fMRI scanning not only confirmed that Libet’s delay exists, but went further, showing decisions can be predicted up to
ten seconds
before deciders “decide.” (Of course, it’s possible to argue that these are ten seconds in which the subject is observed in readiness, preparing to do something as instructed by the experimenter.)

I
DON’T KNOW
what all this has to do with Alzheimer’s. Probably nothing. But it increases the sense of there being some other self beyond the one we’re confident of living within, that feels contained and definite—an alternative self that in our more exhausted moments, in my mother-in-law’s case, we’ve taken to calling Nancy’s evil twin. The interesting question, for me at least, is whether this new Nancy’s simply a part of Nancy that’s always been there, long suppressed and now unleashed by loss of inhibition, or is it something properly new? The validation thesis suggests that it’s the former: that Nancy’s self is still intact; it’s just that we’re seeing a different part of it now, one kept at bay previously by the frontal lobe but given liberty by dementia—the rise of aspects from her subconscious, perhaps. It’s quite a Cartesian idea when you think about it, the idea that Nancy’s self is still intact but trapped within failing machinery, and it’s just her superficial way of dealing with the world in the old way that’s been lost (if thinking can be said to be superficial). But my own suspicion is that it’s something new—that the amygdala and more primitive parts of the brain, dedicated to survival, selfish and aggressive, are being allowed to come forward and create a new self; one that, in the circumstances, we can only continue to call Nancy. I’d always hoped, until recently, that I had a soul that would survive me, but I see now that I will have to locate it somewhere hidden from consciousness, unknown by what I think of as my self, if what I know now about the consequences of brain damage isn’t to have the effect of extinguishing that hope. Reading about caregivers’ experiences of looking after loved ones—husbands and wives, but particularly husbands—who have suffered catastrophic head injuries in accidents or assaults and have become
different people
isn’t reassuring.

The weather’s quite outstandingly foul for May. A hailstorm in May seems like the end of the world. Though the gloom is mitigated by being offered more paid help, by one of the other aides. After a brief crossover period the first aide bows out, Morris’s confidante, citing tiredness and illness; I’ve no doubt that Nancy’s sniping was the cause of both. It’s difficult (that’s putting it mildly) to find people who can work with Alzheimer’s sufferers and not become short-tempered, bewildered, bored, exhausted, or demoralized. Our second aide is one such, someone who doesn’t and isn’t. She’s cheerful, assertive, robust, and unoffendable. But she also has young children, a farm to run, is the school cook, and caters for weddings. We squeeze extra hours out of her when we can but that’s the most she can offer.

There are seasonal signs of hope in the garden. The wood is teeming with bluebells, thousands of them in a purple haze, and a melancholy bluebell scent drifts up the garden. People have been along in their cars to visit them. Nobody thinks to ask us if it’s okay to wander in there, but we don’t mind too much, at least not until we see, one late afternoon, somebody standing on the drive with his hands on his hips, looking up toward the house, standing guard it turns out, while his accomplice is at work. They see me at the window and retreat. But when I go down there, the earth has been disturbed in several areas under the trees. It was the whole plant, bulb and all, that they were after, and they’ve made off with armfuls.

Chapter 20

It’s a poor sort of memory that only works backwards
.

—L
EWIS
C
ARROLL

E
LSEWHERE
I
DESCRIBE MEMORY BANKS AS A LIBRARY
that we can visit in our heads. That’s the traditional way of seeing it, but it isn’t remotely accurate. Memory is an activity and not a vault. The brain stores different aspects of any one memory in different parts of the brain. What was seen, what was heard, the smell, touch, taste, the emotional input—all are contributed by their specialist areas. Visual memory’s called up from the occipital lobe, auditory memory from the temporal, working together in a synchronized way. It’s not a place, but a process, and a process not unlike music made by an orchestra. In short, it works in just the same way that consciousness does.

Why do some people have good memories and others bad? My sister has an extraordinary memory for our shared childhoods, which puts me at a disadvantage, when I’m quoted at age eight in a fight over an ice-cream scoop. Partly, the reason some people retain the “film” of the past in such vivid detail is that they use their memories more. To keep a memory you have to keep having the memory, revisiting the memory, using it, so as to keep that collection of neurons imprinted and those synaptic connections in place. If they’re not used, then they wither. To remember things you have to go through the process of remembering them again. You make a new memory each time you remember, revisiting the route from neuron to neuron. Researchers have discovered that there is an actual anatomical change in the laying down of long-term memories. The axons grow new synapses and new proteins are made in the nucleus of the neuron. There’s a change at the cellular level, something that doesn’t occur in the making of short-term memories. In his book
In Search of Memory
, Eric Kandel, who was awarded the 2000 Nobel Prize for medicine, elaborates on this idea that in order to convert a short-term memory into a long-term one, we need to care about it enough, whether for happy or unhappy reasons, and that our caring has physiological effects. One hit of neurotransmitter and the synapse is improved. Five hits and the cell is alerted to this (whatever it is) being something important. It sends the information, via a protein, to the nucleus that triggers the genetic switch for the growth of the new synaptic port. There are two ways in, it seems, via quantity or quality: either via repetition, thinking about something over and over, or by means of the intensity of a shock or equivalent emotional event.

The things that stick aren’t always the obvious things. Odd, oblique, incidental, tangential things stick. As the writer Elizabeth Bowen said once in an interview, “The charm, one might say the genius, of memory is that it is choosy, chancy, and temperamental: it rejects the edifying cathedral and indelibly photographs the small boy outside, chewing a hunk of melon in the dust.” Montaigne, in the sixteenth century, was more succinct but less alluring, as is his way, in writing that “[t]he memory represents to us not what we choose but what it pleases.” What you care about isn’t necessarily what you think you care about.

When you remember, it’s a memory of the memory that you’re having. You don’t go into the library of your memory and pick up the book and read your past. In a sense, you write the book all over again. And research shows that if you don’t take the trouble to rewrite the books, the books disappear. It’s rather like those wardrobe nannies who insist that anything not worn for twelve months ought to be put in a bin bag.
You haven’t thought about this for years so I’m chucking it out
. It sends the nanny in and chucks, and it’s only when you open the wardrobe that you discover your fake fur jacket/caravan holiday memory is missing. Or, to use another analogy, we need to keep digging out paths in the snow. If we don’t, snow eliminates them. Get out there and dig those paths. Maintain them and you can keep walking on them. Don’t maintain them and they are gone. How does the brain do this? The nanny in question’s an enzyme called PP1 that removes the phosphate from the target protein and deactivates it, in effect wiping a particular memory from the slate.

There are four levels of memory. The first, sensory memory, isn’t really memory at all. It’s stuff that the eyes see, that the brain may know (far more goes in than is retrievable), but the conscious self doesn’t notice. Take the scene in front of my eyes just to the side of the laptop, right now, for instance. The books and papers, used coffee cups, the tin of salted almonds, the box of old photographs waiting to be put into albums, the postcards, pens, mobile phone, plus the jewelry and homework the children left there—everything that’s spread on the coffee table beside me as I write this—made a brief sensory imprint in my mind, but hadn’t been processed any further until I turned my attention tableward. Perhaps a probe could find it in my head, if probes and scanners grew that sophisticated. Perhaps I might be an unwitting witness to a crime that my eyes saw but I didn’t register, while looking out of the window in the city at the cherry blossom on a busy street, where among the traffic and pedestrians, somebody was quietly and efficiently killed with a knife. I saw it but I didn’t register it. It was among the things my eyes were seeing while I was concentrating on something else. That’s the first level of memory.

The second level is the working memory. This is the material we
hold in mind
, temporarily, like part of a mathematical calculation we put aside while doing the second part, ready to add the two numbers together, or a phone number we need to remember that was given to us when we didn’t have a pen. It’s recited in the head and retained for as long as we need it. Then we forget it. Nancy is beginning to forget things that have just happened, things that have just been said to her, and how to finish a sentence she’s only halfway through speaking. She’s losing her working memory and is unable to hold things in mind. The man known only by the initials H.M., a neurologically much-quoted epilepsy victim—run over by a bicycle at age nine, and in his twenties at the time of being a research subject in the 1950s—with his temporal lobe function diminished and hippocampus removed, could still remember new things done or said for a few minutes. His working memory survived although his short-term memory, ordinarily the next phase in the process, no longer functioned.

Scientists classify short-term memory differently according to length. Neurologists tend to talk about it as short-to-medium term. The things we did yesterday, last weekend, even the wedding we danced at the weekend before that, can be described as held in short-term memory. The process of converting a select few of these into long-term memory, forming strong memories that survive, can take weeks, and it’s thought most of the work’s done while we sleep.

Memory making is a single-track road. To get from the sensory memory stage through working memory into short-term and thus into long-term memory is like going along one of those winding narrow routes that stretch out into the fingers of the coast of Argyll in remote western Scotland. There’s only one road from the village of Sensory to Long Term. To get to Long Term you need to go through the other three villages first. In other words, if there is a break in the road, a flash flood, say, and then a road slip, a section of the road sagging and tipping down the hill, and the road becomes impassable, nothing can get to Long Term. That’s what happens in Alzheimer’s. The short-term memory fails, is gone for good, and so nothing new can be processed into long-term memory. The poor old village of Short Term is obliterated entirely. The brain has an alternative route
out
of Long Term, though not in. Eventually it, too, will be obliterated.

Once you get into long-term memory, the road branches. Down one road there’s implicit memory, and down the other, explicit. Explicit further branches, into episodic and semantic. Implicit is another way of saying procedural memory, the one that deals with the things that we do as if automatically. Riding a bike, driving a car, knowing a dance, playing the flute: these skill memories are taken care of by the cerebellum in league with the basal ganglia, four clusters of neurons at the base of the brain that help initiate and control movement. Serotonin is the neurotransmitter of choice in the making of implicit memories, and dopamine in the creating of explicit memory. Researchers think that implicit memories are laid down while we’re in REM (rapid eye movement) sleep, in which our dreams are most vivid, and that explicit memories are made during non-REM sleep.

Explicit memory is the sort we need actively to call up, “thinking” in the familiar conscious sense. Episodic is autobiographical, and locates things in time and sequence: “I ate eggs for breakfast, went to the life drawing class in the village, and after lunch Nancy and I took the dogs to the beach.” That’s episodic memory. Semantic memory is encyclopedic, intellectual, for facts.

Alzheimer’s damages the episodic (autobiographical) memory first and worst. The semantic survives longer. Sufferers might know very little about themselves, nothing whatever about what happened ten minutes ago, and yet might be able to talk at length about the history, the battles, and the princes associated with a ruined castle visited on a Sunday afternoon outing, using long-term semantic memory. Alzheimer’s sufferers of a certain generation, taught screeds of poetry by rote at school, find they can still recite their twenty verses of Longfellow with perfect accuracy, until quite late in the disease.

Because memory is a process, relying on neurons to fire up in the same sequence each time we remember, memory can be wrong. Memory, indeed, is notoriously unreliable. Why should it be, though, when we rely on it for survival? Perhaps that’s the point. Perhaps our brains are more dedicated to our psychic health than to the truth. What we see, the way that we see it, and the way we remember it are essentially subjective. The process of making memories and then remembering them is both technical and personal. The synapses may not reproduce their original pattern. It’s like the old fable of the bad carpenter’s table, in which leg number two is drawn from leg number one (and is a bit out), and then leg number three is drawn from two and is even more wrong, and number four, drawn from number three, isn’t anything like the same length or shape as number one. Something we thought, imagined, doubted, added on one occasion of remembering distorts the memory for next time it’s called up. How then can I be sure of what I have done and experienced in my life? There are some slices of time, moments, collections of moments, from the deep past that are unlikely, eccentric, unaccountably preserved, and which I treasure. But are they accurate, or are they a story I tell myself for my own reasons? There’s no way of knowing for sure. Not only do you, the reader, perhaps suspect that not all of what I write about life with Nancy is exactly as it happened, but strictly speaking, knowing the mechanism to be emotional, I ought to suspect the same. Our memories of things are never objective. We interact with them and add meaning; highlight certain aspects and throw others into shadow.

The brain is selective about memory. Not only about the details, but about the quantity. This selection and editing is important in life having a shape. The truth of this is illustrated by the problems encountered by people who have too much memory. There have been neurological cases of people who can’t forget things. Their brains can’t filter out or edit and everything is retained. They can tell you in detail exactly what was said or done on this day last year. What happens to them is that they lose the big picture, a sense of perspective, and are overwhelmed by detail. No choices can be made, no judgments. Everything is of equal importance. Because of this, they don’t always function well as humans. So it appears that in principle and in moderation, forgetting is important. As Nietzsche wrote, “There could be no happiness, cheerfulness, hope, pride, immediacy, without forgetfulness.”