What Dementia Teaches Us about Love, by Nicci Gerrard
LUCY INGRAMS
What Dementia Teaches Us about Love
While being interviewed on Radio 4’s
Start the Week, Nicci Gerrard referred to her book in passing as a ‘novel’. Yet its title plainly signals a work of non-fiction. And its narrative is historical, following the demise – through dementia – of the writer’s father, John Gerrard, from diagnosis to death.
Early on, she conjures a beautiful image of him swimming – and singing – in a Swedish lake one summer evening,
when he had already been ill for some time. ‘It was a song I’d never heard before, have never heard since… He seemed quite contented, happy even, but at the same time it was the loneliest sight: as if there was no one left in the world; just him in the half-darkness and brimming silence.’
Nine months later, her father was dead. How this came about is a bleak fable of unintended consequences. When he was admitted to hospital for the treatment of leg ulcers, strict visiting hours were imposed on his family, who were then banned altogether as an outbreak of norovirus took hold. ‘Surrounded by strangers and machines,’ Gerrard writes, ‘he swiftly lost his bearings... There is a great chasm between care and “care”, and my father fell into it.’
So do many, many others – leading Gerrard to found, in his memory, John’s Campaign. Just as parents have full rights to accompany their children in hospital, the campaign canvasses, so too must the families and carers of dementia sufferers.
While the loved, lone figure of her father haunts the book, its pages teem with other people too. Community nurses, government advisors, professors, psychotherapists, artists, still-articulate sufferers in the early stages, partners, carers, daughters and sons – Gerrard enlists a large and compelling cast to help her ‘understand the condition from the inside out’.
In this, she imitates the disease itself. ‘There can be no other illness,’ she writes, ‘so defined by its impact, not just
on those who live with it but on those around them.’ As dementia dismantles an individual, it wreaks havoc across marriages, families, communities and healthcare systems.
In one sense, Gerrard’s enquiry is a stay to havoc. Sidestepping easy handwringing, she deftly, tactfully and doggedly seeks to address the profound philosophical and moral issues dementia raises. ‘If we are out of our mind, where have we gone?’ she asks. ‘If we have lost the plot, what happens to the story we are in?’
Gradually, an answer begins to offer itself, one both moving and ethical. ‘Even at the bitter end,’ she writes, ‘I never thought my father wasn’t himself… He was absent and yet powerfully present. There was something that endured beyond language and recollection… He might not have recognised us, but we could recognise him.’
We think of our adult selves as autonomous, rational and clear-edged, but dementia shows us how ‘thin and porous’ those edges really are. Paraphrasing Desmond Tutu, Gerrard finds that ‘A person depends on other people to be a person.’ She quotes the philosopher Martin Buber: ‘Spirit is not in the I but between I and Thou.’ How much more incumbent it is on us, then, to keep reaching beyond ‘language and recollection’ to contact dementia’s sufferers.
A work of non-fiction this may be, but one so rich in empathy and thought, so structured and imaginative, it’s no wonder that Gerrard accidentally alluded to her book as a novel. Worried by other slips she makes daily in the ‘befuddlement’ of middle age, she includes a poignant scene in which she puts herself through the same diagnostic tests her father took at a memory clinic – treading that other porous boundary, the one between the well and the unwell. Heart pounding, close to tears, she can scarcely credit her ‘all-clear’ when it comes.
Famously, as yet dementia has no cure. Those of us touched by it (some 47 million families worldwide) are all the luckier for this book. If you go into your local library, you won’t find it difficult to find its ‘dementia shelf’, featuring any number of guides and self-help titles – not one of which meets the maw of baffled need the illness generates.
‘Abyss has no Biographer,’ reads this book’s epigraph, quoting Emily Dickinson. Gerrard comes close, as she swings the lamp of her generous intelligence into the darkness.