Keeper: One House, Three Generations, and a Journey Into Alzheimer's (16 page)

“Her pulse is regular,” he says.

“Oh thank god, thank god. I’ve been trying to wake her up for a good half hour. Normally she’s awake at this time and chatting to me. I couldn’t get her to answer.”

Chris helps his father back into bed. Meanwhile I sit with Nancy and talk to her. “Nancy. Na-an-cy. Nancy! Nancy! Wakey wakey. Hello-o. Are you there?” I squeeze her hands. She doesn’t respond. Ten minutes pass like this: me tickling and squeezing and shouting and demanding that she wake up, get up, right now; Nancy unresponsive and apparently unconscious. I keep going. Finally, when I squeeze her big toe, she kicks out at me with a sleepy growl.

“Nancy,” I say, very firmly, my head dipped close to hers. “You need to get up now. Come on. I need to speak to you. Open your eyes.”

“No,” a small voice says.

“Come on.” I pull at her arms and she rises, eyes still closed, and puts her legs out of the side of the bed. I pull gently on her arms and she glides to a standing position. I take her, slowly, eyes still closed, to the bathroom, where she sits and has a pee. Then I put her, eyes still closed, back to bed. She’s grumbling under her breath.

“I just need to speak to you for a moment,” I say, knowing Morris is still in a panic. “I need to ask you a question. Would you like a drink of water?”

“Bugger off,” the voice says, from between near-closed lips.

“Thank god,” Morris says. “She’s fine.”

A
T THE END
of the month, as the school Easter holidays begin, Chris goes off with his good mate Michael for a week’s sailing course. I’ve known about this booking for a long while and am in favor, despite dreading it. An annual week off from family life to do something independently is official marital policy; it’s just that I never take mine. It isn’t a happy week for the nonsailors. The weather is cold and rainy. The children and I have to be on hand, on duty, in case of upset or crisis, so we hang out in the drawing room most of the day, where we can keep an ear and eye on things. Nancy comes in at regular intervals to ask for help with
the chap through there
.

“I can’t help you with that, Granny, sorry,” the children say, as coached.

“No. No. You don’t understand,” Nancy tells them. “You have to come and talk to him. He seems to think we know each other and he’s being annoying.”

Eventually, weary of interceding, the four of us take to hiding upstairs, reading by the fire, Jack playing his self-absorbed role-playing games with guns, coded messages, cloaks, and light sabers. We work through a stockpile of films, magazines, and chocolate. Chris and Michael have a freezing cold, challenging week on the water, with bad weather and plenty of chucking-up and have the time of their lives. It isn’t such a vintage week at home: I’m up early, mucking out horses in a gale force 7 and horizontal hail showers.

Each of the seven days Chris is away there are tears. Sometimes mine. Almost daily Nancy’s. “This man is NOT MY HUSBAND,” she insists. “He’s NOT, he’s NOT, I’ve never seen him before in my LIFE.” She means it. She’s frantic, and she can’t understand why I’m not equally exercised by the stranger in the sitting room. It’s particularly bad timing, as poor Morris is beginning to have embarrassing “toileting issues,” to use the social care argot. He is soiling himself in bed. As is the way of things, this begins in spectacular style while Chris is away. The morning home care lady arrives to find her charge awake and mortified. She deals with the worst of it (getting him up and clean is her remit) and then hands me the marigolds (getting the bed clean isn’t). I text Chris, who is night sailing in the Cromarty Firth.
Yr parents hell. You owe me big time fr this chum
. It’s decided that we’ll look for a privately employed home help to work twenty hours a week.

The council announces a residential care crisis (another in a series), and all respite at the town nursing home is revoked for the year, all six weeks that were so painstakingly negotiated. It’s a financial crisis, one being experienced simultaneously all over the United Kingdom. The council doesn’t have enough in the budget to run their homes, to hire their staff (nor can they keep them: We hear constantly how low morale is among the workers at the town home), and so, in this situation, cancellation of the bookings of respite clients—who will only be there for a few days, or a fortnight at a time—is the immediate money-saving mechanism. They know, even so, at the council that there will have to be some negotiating and exceptions will have to be made. Several emotional phone calls later, Nancy’s April week is rearranged. She’s to go to the new home, the countryside home, a swish bungalow-based home with an Alzheimer’s unit, half of which is locked off unused because there isn’t the funding to run it. So Nancy goes there, and Morris goes to the seaside home: separate destinations because it’s judged that he needs a break also. Respite requires a formal social work assessment on each occasion, which entails a pot of tea with our care manager in the conservatory, answering detailed questions about the in-laws’ abilities or lack thereof, and the exactitude of need. Questions, I can’t help thinking, that could have been asked on the phone. It can only be that they want to run an expert eye over the household, sniff the air, and gauge the mood.

It’s a busy week, full of incident. My horse has become ungovernable with the coming of spring, and first Chris and then I am bucked off, in his case flat on his back onto tarmac, and in mine upside down against a wall, denting a drainpipe and slamming into a water tank. I hobble round the house doing the holiday packing, limp in and out of care meetings, shuffle bruisedly onto the plane. We go to Turkey and buy a teeny house, not much bigger than a beach hut, but with drainage and a veranda, on a holiday site on the Aegean coast, spending the bulk of the French
ruine
money.

The plan to get extra paid help doesn’t go quite to plan. The person I had in mind has taken a job at the town nursing home. I consider putting an advertisement postcard in the post office but am dissuaded by a friend. Mightn’t that be awkward—interviewing people you know from the village and then not hiring them? She has a point. Still, there doesn’t seem to be any alternative. I ask the lead home aide what she thinks, and she offers herself for two hours each weekday, to keep an eye on the in-laws and help with the housework. I accept with gratitude.

The B and B takes off with a whoosh, with a rush of inquiries by e-mail and others by phone. My irritation with the telephone means that e-mail queries are far more likely to be successful. I develop a highly unscientific method of weeding people out. I attempt to instigate an e-mail conversation. If people are irritable, blunt, or evasive, if they can’t spell or want a discount, they’re turned away. My approach is fearlessly partisan. But the days when there are guests departing and arriving are always, whether by coincidence or not, the days when Nancy’s most troublesome.

Chapter 18

Nothing is at last sacred but the integrity of your own mind
.

—R
ALPH
W
ALDO
E
MERSON

T
HE RELATIONSHIP BETWEEN MIND AND BRAIN APPEARS
, at first sight, to be a relatively easy one to grasp, even for the amateur neurologist. Brain is the machine, mind its creation. Brain is the cinema equipment, mind the feature film. Brain is the cluster of tiny lasers on the podium, and mind the holographic image of the Fabergé egg. Brain is the instrument, and mind the consciousness that arises out of it, orchestrated by millions of neurons working in concert. It’s your brain, not your mind, that the surgeon sticks the scalpel into. It’s your mind, not your brain, that feels nervous at the prospect. Simplistic, but so far so good. It’s when you get into the relationship between brain, mind, self, and soul that things become more speculative and more prone to prejudice, not least of the religious kind.

Aristotle set the agenda in the fourth century
B.C.
as a materialist, arguing that the soul (mind) can’t exist without the body, which sounds impressively modern until you take into account his insistence that the heart was the location of the thinking self, and the brain some kind of body-cooling device. In general the more modern the thinker, the more integrated brain and self are assumed to be. So it’s mildly shocking to read something as recent as Carl Gustav Jung’s
The Interpretation of Nature and the Psyche
(1955) and find him asserting that “we must completely give up the idea of the psyche being somehow connected to the brain.” Mary Baker Eddy, founder of the Christian Science movement, agreed. “Give up the belief that mind is, even temporarily, compressed within the skull, and you will quickly become more manly or womanly,” she wrote. “You will understand yourself and your Maker better than before.”

In contradiction of this, the most recent crop of popular science writing is at pains to point out that in every way that really matters, we are our minds, and that our minds and our brains are wholly interdependent. In his idea that psyche is something separate, Jung isn’t far from the mind-set of René Descartes (1596–1650) and his firm division of body and self, the self (soul) merely residing in the (mortal, transient) body until such time as immortality can be earned and achieved. It’s assumed that this philosophy is biblical, but in fact you’ll struggle to find supportive evidence there: the idea of dualism is essentially Greek, and man in the Bible is a holistic, whole creature, body and soul together, anticipating bodily resurrection. The Greek idea is that immortality is a fundamental human attribute; in Christianity it’s a gift from God. Plato was Descartes’s model, in his belief that an immortal self enters the body somehow, and departs it intact after death. (Descartes struggled with his faith. Having coined
cogito, ergo sum
—I think, therefore I am—he worried that perhaps his thinking self was all that he was, and no more.)

It looks like a two-horse race. Either the brain is all there is to us, personalized through genetic inheritance and through the individuality of experience into a mind, creating the illusion of soul through its clever holographic tricks, and we die with our neurons,
or
the brain is simply the machinery the self/soul employs for its brief stay on earth and in time, and the self/soul, the
ghost in the machine
, survives us. Any mortal creature would wish Descartes fervently to be right. Added to which, the idea that there is some higher order of personal reality beyond the body, the state of the brain, the workings of the mind—this has a special resonance for dementia sufferers. It introduces the hope that their essential self survives the apparent disintegration dementia brings, locked away safe from the banality of disease.

Descartes thought the soul entered the body through the pineal gland, choosing this entry point because there wasn’t then any other obvious use for it, and it was thought to be specifically a human piece of kit. He was, for obvious reasons, an established church favorite, despite his doubts. The establishment was less keen on Franz Joseph Gall (1758–1828), inventor of phrenology (head bump reading), who having surveyed the head shapes of the criminal class, placed subtleties of personality in specific brain regions, which seem to us now entirely random: self-esteem in the parietal lobe, for instance, secretiveness in the temporal lobes, and friendship in the occipital. Less eccentrically, this led him, and the population at large, to the conclusion that self is biology. This was enough to get him expelled from Austria by the emperor Francis I.

If brain is mind, and mind’s thought equivalent to self, self equivalent to soul, theological problems are going to arise. There are neurologists writing now who are confident that consciousness itself will before long be “located” and explained as utterly physiological, a line of thought that Francis Crick, the DNA Nobel winner, popularized in his book
The Astonishing Hypothesis
(1994). In his last paper (2004), Crick suggested the claustrum, a “sheet” located beneath the inner surface of the neocortex, which receives information from all areas of the cortex and returns information back into it, might be the seat of consciousness. The truth is that science doesn’t yet have the answer to the mystery: how it is that a subjective self comes about at all (known as the Easy Problem) and achieves self-awareness (the Hard Problem).

The phrase
ghost in the machine
, incidentally, was coined by a British philosopher, Gilbert Ryle, in 1949, in mockery of Descartes’s dualism. Arthur Koestler’s book of the same name (1967) was interested in a different kind of ghost, one associated with the amygdala, deep in the limbic system, creator of impulses concerned with gut instinct, fear, aggression. He suggested that our social evolution has far outstripped our brain evolution, and that we are held back by the primitive emotions and functions of obsolete but still-powerful remnants of our prehistoric selves, which can be held accountable for our being warlike, suspicious, and bigoted.

When the frontal lobe is damaged by Alzheimer’s and the self is fractured by the forest fire of neuron death, maybe other parts of the brain rise up to compensate. When rationality is damaged or lost, it is perhaps more primitive parts of the brain and the great hidden sea of the unconscious that prompt facets to rise unexpectedly into view, redirecting the personality of the dementia sufferer into something the caregiver doesn’t recognize, with new preoccupations, hostilities, and weirdness. As Freud wrote, though we are more sure of ourselves than of anything, confident that a self is something autonomous and self-contained, the truth is that “the ego extends inwards with no clear boundary into an unconscious psychical entity.” As social philosophers of the seventeenth century might have put it, Nancy has lost her Natural Government, and is in danger of relapsing into a state of nature.

It isn’t necessarily a two-horse race. The German philosopher Arthur Schopenhauer seems to have been an adherent of a third way, the idea that though there is no immortality of the individual earthly self, we are more than our brains, and return after death to the same state of existence we enjoyed before birth, giving up (with relief, he claimed) the painful and limited animal consciousness of being human and existing in time. “Consciousness is destroyed in death,” he wrote, “but that which created it is by no means destroyed.” He wasn’t the first to see things this way. Anaxagoras, in the fifth century
B.C.,
is thought to have introduced the idea of mind
(nous)
as something infinite and immortal, emanating from The One, the collective human entity that organizes matter and survives it.

Others take a more Platonic route. As the Scottish psychiatrist R. D. Laing wrote, “If my physical frame dissolves, I can’t live in this world any more, because this world is a transform: the brain is the transformer and is itself a transform.” (A
transform
is reality as delivered up by our perceptions.) It’s perhaps Laing who puts the problem of brain and self most succinctly when he goes on to say, “[T]his collection of cells has the impression that it is I. This is a proposition I do not necessarily agree with.”