Listen to this story
We are all trapped by the limits of our mind. It’s not possible to see the world we live in, only minute, shuttered portions of it where the beam of our attention falls. When I was a teenager, I noticed other teenagers. Pregnant, I suddenly saw all the pregnant women, then the babies, and then the world was full of small children and their exhausted parents, full of single mothers. Now I see countless people who are frail and scared — but that’s only because I saw my father, sick with dementia, so frail and so scared.
We can’t see everything, but perhaps we can learn to be more aware of just how blind we are and make some kind of amends. A few years ago, when I was working on a novel called Missing Persons, I spent weeks wandering around London, suddenly seeing what had always been there: the figures under the arches, the people huddled in doorways, in Underground stations, on benches, in makeshift tents, pushing supermarket trolleys filled with plastic bags of tatty possessions, holding out cardboard signs saying “Help Me,” old beyond their years. The homeless and the dispossessed, who have fallen through every safety net, remind us of what happens when luck fails. Best not to look: Not one of us, after all.
Every life is precious: So easy to think and to say, much harder to feel and act upon. What if the person who suffers is different? What if they come from far away, in rickety boats? What if they are lying in a doorway in a rank sleeping bag with a can of hard cider in their hand and an ugly, loyal dog beside them?
And what if they are old, forgetful, decrepit, adrift, and seem like creatures from a world we don’t want to think about? For many decades, those living with dementia have also been missing people in our society. Sometimes they have withdrawn (or have been withdrawn) from the public sphere and are out of sight, in hospitals, in care homes, behind closed doors. Sometimes they are more existentially invisible. Because they are helpless, at the mercy of others, a kind of erasure of social meaning turns them into forlorn and ghostly figures. They are there but not really there, not part of the thick flow of life. The light does not fall on them.
My father no longer needed a gifted clinician but a sympathetic human being who would recognize that, for all his losses, he remained a subject, an I.
I remember being in a restaurant when my father was in the early stages of his great decline, and he was having difficulty with his order, on a loop of indecision. The young waitress was smirking and rolling her eyes at us, as if we were in on the great joke. I followed her when she left the table and gave her a dressing-down; she looked so bewildered and upset that I was ashamed of myself. She wasn’t cruel; she just didn’t know, didn’t understand. She thought she was in a different kind of play — a lighthearted farce, not a tragic one.
I’ve lost count of the times when I’ve witnessed people being impatient, maybe a bit contemptuous, of men and women in public spaces who are old and confused and slowing things down (and of the times I’ve been like this myself). Or the occasions when I’ve witnessed good, hardworking doctors and nurses talking about and across their frail, confused patients rather than to them; snapping on plastic gloves before they touch them, without explanation, as if their bodies were contaminated objects; looking at computer screens rather than at the vulnerable and often anxious person who’s in an unfamiliar situation and needs their help; just seeming a bit in a hurry or a bit indifferent, other things on their mind.
I will always be grateful to one of my father’s doctors, a melancholy and exhausted-looking man from Eastern Europe whose manner was invariably one of tender respect. I’ve no idea what he was like as a clinician, but my father was at a point in his life when he no longer needed a gifted clinician but a sympathetic human being who would ask his permission to sit on the bed and take his hand, talk to him deferentially, address him formally by his title (Doctor), recognize that, for all his losses, he remained a subject, an I.
As with so many other groups of the forgotten, it is easier to ignore those living with dementia if they are subtly dehumanized, made less. It is built into the way we talk about them, the stock phrases we use without stopping to consider their implications: They are not the person they used to be, we say; they are not all there, and they are no longer themselves. They are shadows of themselves. As the loss deepens, the language becomes starker: We say that they are gone, minds become sieves. We say that they have lost their mind (where is it, then?) or are out of their mind (where are they, then?). And perhaps we say that they are mindless: the living dead.
Not one of us.
We are all diminished if we think like this.