Dementia drives from dusk to darkness

I have previously confessed that, since COVID laid siege to our lives, my reading largely retreated away from new explorations to the comfort blanket of previously read fiction. But I have broken some new ground as well.

Last month I revisited Ian McEwan’s novel Saturday which I first read shortly after it was published in 2005 and read for the first time Sinead Gleeson’s largely autobiographical Constellations — Reflections on Life, published last year.

I am taking the two together because, though it is not central to either, they both address the subject of dementia, one through fiction, one through fact.

We’ll take Saturday first.

The story is the unfolding of events from the early hours of a specific Saturday, 15 February 2003; in the life of Henry Perowne as seen from his perspective; aged 48, successful neurosurgeon, married to equally successful lawyer, two adult children; son a talented musician, daughter a promising poet, comfortably off, period house in central London.

All the ingredients of a clichéd perfect life of which Perowne is thoroughly aware and appreciative — in the round. But his contentment is alloyed by brooding awareness of advancing middle age and the broader gloomy backdrop of the impending US/UK invasion of Iraq. The huge anti-war demonstration in London that day weaves its way in and out of the story as the day goes on.

Perowne doesn’t attend the march. His Saturday is to be devoted to normal week-end stuff; a regular squash game, shopping and cooking for a family dinner in the evening. Energy, grit and suspense are injected by a minor disruption of this cosy predictable, domesticity early in the day which triggers a more significant one later in the evening before the pace and intensity winds back down and we end where we began, with Perowne, unable to sleep, looking out over the square from his bedroom window in the semi-darkness of urban night, his reflections on his circumstances yo-yoing between cheerful and wistful.

And that’s all I’m going to say about the generality of the novel itself beyond wholeheartedly recommending you to read it. There is a lot about the universality of the human condition compressed into the 24 hours of this book.

One of Perowne’s regular Saturday tasks is to visit his mother who is living in a nursing home, suffering from a dementia extreme enough to prevent her from recognising her own son. These are a duty rather than a pleasure, to be endured rather than enjoyed.

The time he spends in his mother’s company is not so bad because he has established a routine structure. Wherever she is when he arrives, he brings her back to her own room. A pot of strong tea is brought. And, once set with the tea in front of them: “she’ll talk on for as long as he sits there”. He need only make minor tiller adjustments to the “conversation”, if she becomes agitated or loses her “train of thought”. After an hour, he makes noises about having to go, asks her if she would like to see him to the door, helps her from her chair, tidies up the tea tray, guides her through the corridors and sitting rooms to the front door from which he escapes and behind which she remains locked.

Perowne sums up his feelings like this.

Being with her isn’t so difficult. The hard part is when he comes away, before the visit merges in memory with all the rest, when the woman she once was haunts him as he stands by the front door and leans down to kiss her goodbye. That’s when he feels he’s betraying her, leaving her behind in her shrunken life, sneaking away to the riches, the secret hoard of his own existence. Despite the guilt, he can’t deny the little lift he feels, the lightness in his step when he turns his back and walks away from the old people’s place and takes his car keys from his pocket and embraces the freedoms that can’t be hers. Everything she has now fits into her tiny room. And she hardly possesses the room because she’s incapable of finding it unaided, or even of knowing that she has one. And when she is in it, she doesn’t recognise her things.

My father died in November 2007 and my mother followed 8 months later. They were in their mid eigthties but had enjoyed decent health at least until entering their ninth decade. My father had lived under the lingering death sentence of prostate cancer for many years and my mother’s dementia was probably well and truly up and running long before any of us recognised it for exactly what it was.

Around the middle of 2007, they both ended up living in separate nursing homes on the south side of Dublin, my father in Shankill and my mother in Dalkey. While living in Clare, I was doing project work in Dublin at the time, camping out for a few days each week in the otherwise empty family home in Killiney about 10 minutes’ drive from both nursing homes, shuffling visits between both while my father was still alive and for the remaining months of my mother’s life after his death.

McEwan’s words resonate strongly with me.

For most of my visits to Dalkey, the question foremost in my mind as I walked up to the door was “How long must I stay to convince myself that I have discharged my duty?” I would be ushered through various secured doors to the dedicated dementia wing where, like Perowne, I would find my mother either in her bare, basement-dark anonymous room or, more likely, in a television lounge opposite it staring vacantly rather than at the screen, surrounded by other dementia sufferers, equally wraiths of their former selves.

She would register my face as familiar but would not be able to recognise me specifically. I would tell her the goings on in my own life and family, but only to eat up minutes because attempting to impart information was straightforwardly pointless. And then I would take the easier route of nudging her to talk about her own life which she would willingly do, hopping without pattern or sequence from one memory to another, mostly from her early life. When things petered out, a prompt would renew the impetus. After maybe 45 minutes, I would feel the box had been ticked and I could make my way back like Orpheus through the various security layers of this underworld out into the sunshine with a much quicker step than when I entered it.

A simple change made the whole experience better, unfortunately only for the last few visits, but definite proof that late can be better than never. When I mentioned how tough I was finding it to my sister, she gave me blunt advice for which I will forever be grateful. “Read to her.”

I did, from a book of Russian short stories she had read to us as children. I have no idea if she took any of it in or whether the words were simply flitting across her mental computer screen, incapable of being saved. But she listened with rapt attention and the whole experience became so much better for me, whatever about her. The 45 minute “rule” went happily out the window.

Ironically, my mother’s physical health was quite good. In the end, she died of an infection that was probably already coursing fatally through her bloodstream before anybody realised she was unwell at all. If there is a grim silver lining to dementia, it is that detachment from reality includes unawareness of the imminence of one’s own mortality. In that respect, my mother was perhaps more fortunate than my father who retained his mental acuity until shortly before the end and knew exactly what was ahead of him.

“The body is an afterthought” is the opening sentence of Sinead Gleeson’s Constellations, the backbone of which is the progress of her own life mediated mainly through the lens of the “ups and downs” of her own body; serious arthritis through her teens and leukaemia in early adulthood, enduring frailty transcended by “producing” two healthy children. Her personal narrative is interspersed with digressions beyond herself but from her observational experience; the sudden, accidental death of her first lover; the “Repeal the Eighth” campaign, all related to the broad theme of the body — mainly prose but a sprinkling of verse.

She starts with the afflictions of her teens and finishes with the decline through dementia and eventual death of her aunt Terry, who she describes as a second mother. Gleeson records the journey poignantly.

Every week we invite her for dinner, and slowly the words start to drain out of her. Vocabulary becomes an unfamiliar tool, as if she’s handling a wrench. There was always easy conversation and discussion, but now the words become flotsam, just out of her reach, hard to snag…

The self she knew inches away from her, and she begins to abandon her own life.

After several falls resulting from blackouts, Terry is consigned to a nursing home and then, as “her body starts to draw level with her mind in terms of deterioration”, following a mini-stroke, hospitalisation. By then, the sentences had become “even more half-formed, the lexical equivalent of a ghost estate.”

Gleeson’s sorrow is both intensified and mitigated by the contrast between the debilitating decline and the vibrant life that went before. As was normal for working-class Crumlin teenagers in the 1950s, Terry left school at 14 and worked through to normal retirement in a succession of local factories, consolidating her independence but remaining single throughout. In addition, she had, as Gleeson describes it, a kind of motherhood thrust upon her; caring for younger siblings and elderly relatives. Within the constraints and opportunities of her circumstances and time, her life was a success born of diligence and dedication.

There is a similar tinge of regret in Henry Perowne’s reflections as he drives across London to visit his mother. A single mother, she gave her life to housework, “to the kind of daily routines of polishing, dusting, vacuuming and tidying that were once common and these days are only undertaken by patients with obsessive compulsive disorders.” He grew up thinking her intelligence was limited and that she was without curiosity. Now, he knows that her life wasn’t unfortunate, and that he had no business as a young man being condescending towards here. But, it’s too late for apologies.

Lillian Perowne was a serious swimmer who had represented her county. Perowne’s treasured memory of her swimming was of when he was 10 and he and his classmates were at the local municipal school waiting for an adult session to end before their own can begin. Eventually, his mother is the only adult still in the water, her progress as smooth as it is fast, watched in silent admiration by his classmates.

This was no mere duster of sideboards. He’s seen her swim often enough, but this was entirely different, all his friends were there to witness her superhuman nature, in which he shared.

I would have been about 10 when I came across an exhortatory cartoon in the printed CIE bus timetable for Dublin. It pictured women sitting comfortably and complacently in a bus, scarves on their heads, baskets on their knees, while raincoated men, some if not all in hats, briefcases in hand, half-asleep, stand clutching the overhead bar to prevent themselves from falling.

The caption read: “Shopping? Visiting? Then get home early, at your ease. Leave rush hour seats for workers please.”

Nothing better illustrates the matrimonial division of labour of the time. Men were the breadwinners, women the homemakers. In my own childhood home, that demarcation was as clear as it was complementary. I have no doubt now that my mother would have liked to spread her wings more broadly, maybe as well as her domestic role rather than instead of it. But she and my father merit equal recognition for steering five children to safe, sane and reasonably successful adulthood — although my mother’s anxiety that we were all, in different ways, one short step away from it all falling apart, melted away only in the final years of her life, perhaps an indicator that she was leaving us in more ways than one.

Sinead Gleeson writes:

I fear losing my mind more than I do dying. I’d take a shark attack and falling from a height and being stabbed before I’d take my mind being hijacked and replaced with clouds. I would take another round of cancer over untreatable dementia. The toxic silt of chemotherapy sludging through veins. I’d take that over my family watching my personality, my memory, me drift — unreachable — to the bottom of the sea. Anchored in the dark, the weight of all that water. Memory punctured, slowly deflating. Where did you go?

Apart from going to bed healthy one evening and not waking the following morning, there are few attractive ways of dying. But the journey into the Hades of dementia must surely be among the grimmest of all. Nonetheless, and maybe because of, it is better to appreciate the life than mourn the manner of its ending.