It has been three months since my grandmother died, yet still the realisation of her absolute absence intermittently winds me like a punch in the gut of my being. The pain of the loss of her self came long ago, but only now the dust left by death is settling is the aching for her actual presence setting in.
No illness is kind, but the cruelty of dementia is barbaric. While my gran will eternally exist for me as the impossibly glamorous matriarch, whose improbably romantic name summons tales of ballroom dances and envious glances, it is absurd to propagate the myth that this identity survived the ravages of her illness. My granny was the first person to hold me, and saved my life when I was born on my kitchen floor with the umbilical cord wrapped round my neck. She taught me to sew and knit, would plait my hair and play fairies with me, and showed what it meant to be truly loving, selfless and kind. My granny slipped away many years ago- but acknowledging this doesn’t mean I didn’t care for, or grieve over the shrunken, innocent grandmother I said goodbye to. But it feels like an insult to the strength of my gran’s character to say that she who died was the same person as she who lived.
Living with dementia, be as as a carer, relative of sufferer, means a protracted and mutely continuous experience of mourning. You mourn for the loss of identity, of consciousness, of very being, while they for whom you cry are sat beside you, bewildered or ambivalent. With dementia, the act of caring is in someway an act of grief itself, the perverse reversal of roles inciting each performance of care and nurturing to be one of veiled grief. The cessation of that care, therefore, brings with it a double loss- they are no longer here, and we are no longer needed. Attempting to reassert one’s own identity amongst the rubble left by death is at best a slow and confusing procedure. At worst, the debris overwhelms; dust flies up, blinds the eyes and numbs the senses, so when the fall comes, those left behind disintegrate without much external reaction. The continuance of familial love is the scaffolding which prevents this from occurring.
In an article for The Guardian, Nicci Gerrard probed the connection between dementia and the arts, but more significantly, the entanglement of selfhood with loss, language and memory: “There is so much loss around dementia, so much sorrow; an existential scariness and an infinite strangeness. Who are we when we no longer have our memories? At what moment do we die?” Gerrard states that from the hidden land of dementia, none return. “With advanced dementia, a person goes to a place we cannot follow and can barely guess at. The bursts of lucidity that those with catastrophic memory loss can sometimes have are like bright, sharp flashes of lightning over a blasted landscape – or perhaps even that is wishful thinking and they signify nothing, are just the last random sparks thrown out from a dying mind. We hang on to meaning and insist on it.” Ultimately, catastrophically, one must concede this is true. But that hidden land draws in persons far beyond the dreamer of the nightmare themselves.
My granddad would say that my gran was like a little girl lost- little bo-peep caught searching for sheep in a home that was no longer her own, displaced from the land of nod. The repetitive bewilderment of nursery rhymes seems an appropriate discourse for the regression of dementia. My gran once could choose to be an intimidating, 5’0″ force of nature if she wished, but by the end, all that remained visible of her self was her pure, refined goodness. Perhaps I, as Gerrard predicts, am merely hanging on to meaning, but it seems to me as if dementia had slowly evaporated her character, leaving a distillation of the love that resided within her regardless of mood, circumstance or incident. A purely innocent, unmotivated love.
None return from the hidden land of dementia, just as none return from the conspicuous land of death, but I think the living can take comfort in that love evades them both. And so I disagree when Gerrard says that, “We come into life with nothing and gradually we build up the vast, rich world of the self: language and knowledge and relationships and belongings and experience and memory and love. Above all, memory and love. All of these fall away as the life returns to that state of nothing. When we cannot even say “I am”. When we cannot.” Our selves return to nothing, this much is true. But love and relationships- trans-generational and familial relationships especially- don’t fall away as life returns to that initial nullity. When even we ourselves are unable to say ‘I am’, if others are able to positively say, ‘they are’, ‘we are’, ‘they were’, then, we can. Then that scaffolding is supportive and can prevent those present from also falling.
Nicki Gerrard, ‘Words fail us: dementia and the arts’, The Guardian 19/07/15 http://www.theguardian.com/culture/2015/jul/19/dementia-and-the-arts-fiction-films-drama-poetry-painting