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.
—RALPH WALDO EMERSON
THE 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 philos
ophers 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.”
Chapter 19
The trouble with troubleshooting is that trouble shoots back.
—ANONYMOUS
HERE’S SOMETHING NOT COVERED BY THE BOOK, other than in a veiled and decorous way. Sufferers will need help using the bathroom. Unfortunately, Nancy won’t accept help using the bathroom. She won’t go if anyone else is present, and is outraged by the suggestion that she use the paper hanging by the toilet. We change her underwear at least once a day. Bedding is also affected, and added to Morris’s problems, this means that quite suddenly we have masses of washing to do. But that’s not the worst of it. That’s just laundry. The much worse thing that’s new is that Nancy has started squatting on the floor. Sometimes she tries to hide it. Excreta are found behind the toilet, lurking behind curtains on windowsills, and on one memorable occasion, hidden behind paperbacks in the library—the kind of discovery that’s unexpected late at night when you’re looking for something to read. If she can be persuaded to use paper it is rare that it’s flushed away. Unpleasant sections of toilet roll emerge from cardigan sleeves. She’s taken to cleaning the toilet bowl with her hands, so we are careful about not letting her touch food. The long fingernails have to go.
Stuck at home a lot of the time, companion to a man she believes a stranger, Nancy becomes despondent. The fact of her no longer recognizing Morris has a huge emotional cost. She’s alone in the world now, and unhappy, and it’s as if her unhappiness is beginning to leach out. It fills the air. It coats the walls and furnishings. This isn’t just metaphorical. Despite twice weekly baths, my mother-in-law has acquired a smell, a sweet and sweaty smell with a dark undercurrent: feces, armpit, old organs, fear.
Morris is ill and the doctor comes to visit. They have a long conversation together. Later she rings and tells me that Morris is convinced that Chris and I won’t stay on the peninsula long, that we’ll up and move to the south of France and leave the two of them here all alone.
“The south of France?” I echo. “What on earth gave him that idea?”
It’s embarrassing. Is that what he’s been telling his home care confidante, or perhaps, what she has been telling him, having misinterpreted something overheard—and is that why people in the village have been asking how long we’ll be here?
Morris has grown dangerously unsteady on his feet. His aides have doubled in number so that twosomes can cooperate on the heavy lifting. The consequences of this prove far-reaching. He can’t manage his bathroom visits alone any longer. He’s too unstable to manage the pulling up and down of trousers. He has to keep his hands on the Zimmer frame or he will fall. This puts the poor man in a very tricky situation. What makes it especially tricky is that Nancy stops cooperating. The manner of his demanding that she help, and her refusing, becomes an explosive part of every day. Chris helps Morris when he can, but often Chris is on the phone at the crucial moment. Morris would, in any case, far prefer that Nancy help him. He certainly doesn’t want me in there, a scruple for which I’m grateful.
“Nancy! Nancy!” we hear, urgently from the sitting room. “No! Not that! I need the Zimmer. The Zimmer frame, there. The silver thing with the … the frame, Nancy, the frame! The bars, the rack, the frame thing, there. There!” His conversations with her have become thesaurus-like. “The Zimmer. Right there, right in front of you. The thing right in front of you, the big silver thing, the Zimmer. No! Not the biscuit tin!” He takes a sharp breath inward and bellows, “THE ZIMMER!” Nothing I say to Morris can make him understand that Zimmer is part of the English that’s become a foreign language to Nancy. She relies on cues now, cues and context, a “now you’re hot, now you’re cold again” kind of verbal directing, an impersonal in-car Sat Nav approach. He may as well use the word zangle.
Unfortunately, by the time I get Morris into the bathroom, Nancy has had enough of being yelled at, and is marching off in the other direction. I leave him standing, balancing precariously while I run after her, taking her hands in mine and imploring.
Her reaction is predictable.
“Why on earth should I help anybody? It’s got nothing to do with me.”
This is the crux of it. Nothing has anything to do with Nancy anymore. She floats free of connections to the world. Alzheimer’s has invaded her empathy and placed its flag.
“That’s your husband, though, Nancy,” I tell her.
“No, it is not. It most certainly isn’t.”
“Yes, it is. Yes. Yes. You have to come and give him a hand.”
“I never heard anything so ridiculous.”
“He needs help with the bathroom. And you are his wife. You need to go and help.”
I’m wasting my breath giving her the backstory. All she is listening to, responding to, is my authority over her, my determination that she should act. That alone will save the day. Her respect for my presumption of power is all that drives her acceptance of my orders.
Afterward she retreats to her bedroom, and that’s where I find her, sitting on the side of her single bed, hands in her lap, staring downward and utterly dejected. The conversation that we have now, the daily conversation about her living here with us, her family, and her forty-seven years of marriage, is becoming grindingly repetitive. As the saying (often attributed to Einstein) goes, the definition of madness is doing the same thing over and over again and expecting different results, and from that point of view my explaining things is a mad enterprise.
Except on one occasion. On that day, instead of staring at the floor, she turns to look at me as I come in.
“I’m so glad it’s you,” she says with feeling.
“What’s up, Nancy? What’s up, dear?” I ask, sitting by her. “It was only poor Morris having to go to the toilet. He has to go to the toilet every day in the afternoon and every day you help him. It isn’t worth getting this upset about.”
She fumbles with a paper handkerchief, twisting and untwisting it.
“I don’t understand it,” she says, looking into my face, her eyes wet with tears.
“What don’t you understand?”
“I don’t understand at all what is going on here.”
I put my arm round her shoulders. She rests her head on my shoulder and cries, abjectly and with abandon.
“None of it makes sense,” she says when she’s able to talk. “What’s happening here? How did I get here? What’s happening? Please. Please.”
What will validation do for us now? There’s no cozy pretend world to slip into, averting our eyes from the present, taking refuge in dementia-fantasy, stepping through into dementia-time. What else is there to tell her but the truth? If it were me, that’s what I’d w
ant.
“Here’s the thing,” I tell her. “You have a condition. Your memory doesn’t work properly. You don’t remember things. That might seem like something quite trivial but, actually, it undermines your whole life. It means that you don’t really know who you are.”
She snuffles through the handkerchief and tells me her maiden name.
“That used to be your name, but when you were about thirty, a little over thirty, you got engaged to a nice chap called Morris. You got married to him and you adopted two babies.”
“But I don’t remember that. I don’t remember any of it,” she says.
“That’s because you have this illness and …”
“I am not ill. I am absolutely fine.”
“You have a condition that lots of old people get. You’re in great health otherwise, fit as a fiddle, but your memory is almost gone. Lots of old people get it.”
“Am I old?”
Keeper Page 18
