My father died four months ago.
He slipped away quietly late one evening (just like him to go without making a fuss) and none of his family was with him.
I never got to read ‘I Must Go Down to the Sea Again’ for a final time, or tell him that he did well, that he made us proud. I don’t think I’ve grieved for him properly yet, and I still wake up and have to remember I won’t ever see him again.
He haunts me – not just because I loved him and he was a quiet, constant, slightly eccentric and steadfast presence in my life, but because of the way he spent his last nine months. He feels like a ghost now because he became like a ghost then, living but not alive; with us and yet gone.
My father’s story is also the story of tens of thousands of other people who live with dementia and die with it.
He had Alzheimer’s for more than ten years, but his decline, though implacable, was gradual. He had always been a very clever, competent man – doctor and a businessman, a thinker and dreamer – but also a doer, a fixer, a carer for others, most particularly my mother.
Bit by bit he lost the capacity to do the things that he prided himself on and that were part of his identity. He could no longer drive, organise his finances, find his way around landscapes he once knew intimately, remember certain faces or names, make decisions about his life – although, as is so often the case, for a long and painful time he strove to do so and to hold on to that self he knew that he was losing. But his life, though diminished, was contented.
He lived at home with his wife of 61 years; he saw his children often, and his friends; he told stories about his past, teased his grandchildren, pottered in his beloved garden, watering the tomatoes in the greenhouse, putting seed out for the birds, sitting in the shade of the apple tree in his straw trilby.
He went on holidays with my siblings and with me. He was a good man, sweet-natured and honourable and trusting, and he deserved to have a good ending.
It’s well known that hospitals are perilous places for people who have dementia. In hospital, my father had his leg ulcers healed, and he went into a darkness from which he never escaped.
He was there for nearly five weeks (far too long), and because there were strict visiting hours in his ward, and also an outbreak of norovirus, he was largely alone. The nurses couldn’t give him the attention he needed.
If we had been with him, he would have eaten, drunk, walked, talked; we could have read to him and held his hand and kept him whole, kept him in the world he loved.
As it was, he came out skeletal, incontinent, immobile and inarticulate. We lost him and he lost himself. Although we took him home, he never returned.
Along with Julia Jones – whose 91-year-old mother has Alzheimer’s – I have launched John’s campaign.
We ask that the carers of people with dementia have the right (not duty – many carers desperately need respite) to stay with them in hospital, as parents do with their sick children.
We believe that within a few years it will be unimaginable that there was ever a time when this was not the case, and that baffled, vulnerable, often very scared people were left alone in a place that is intimidating for even the most robust of us.
The damage done in hospital is not the fault of the tireless, overworked and usually terrific doctors and nurses: they simply cannot cope with the demands placed on them. But people with dementia need their experts in experience (if they are fortunate enough to have them). They need nurturers as well as nurses; dignity and vigilant attention alongside the drugs. They need a familiar presence to keep them anchored to the world.
Over the past months, we have heard such stories of desolation, outrage, loneliness, fear and sorrow. And we have heard such tales of devotion, steadfastness, unsung courage.
We have received such generous support, encouragement and help. We have been given a glimpse into the hidden world of carers and have learnt that there exists a community of people trying to make the world a kinder place for those who are frail and powerless.
Of course, I’m trying to rescue my father, my beloved ghost, and it’s too late for that – but not too late for those we care for now, not too late for us.