Dementia: a carer’s perspective

We speak to writer Nicci Gerrard about her father's hospital care, and her campaign – John’s Campaign – that calls for the families and carers of people with dementia to be allowed to remain with them in hospital for as many hours of the day and night as necessary.

The date of my father’s actual death – the one on the certificate, on the order of service, the day his body was taken away and which we will remember at anniversaries and which would be carved into his gravestone, if he had one – was 9 November 2014.

But for nine months before this, he was like a ghost in his own life, and for those months we had been both tending and caring for him, and at the same time been saying goodbye to him and in some complicated way already mourning him.

My father was 86. For ten years he had had dementia, and so was on a path from which there was no turning back, but he was one of those who lived well with the condition: he lived in his own home with our mother, his wife of 61 years; he was mobile and articulate (he loved to tell stories about his vivid past); he was continent; he loved to walk by the river and work in his beloved garden, naming the birds and the flowers there. It’s true that he could no longer look after his money or make plans or drive or hold on a conversation; his memory was falling away and he increasingly lived in the present or in the far past. We – his children, scattered in different counties and one in Africa – looked after him as best we could, but we would not have called ourselves his carers: we were his sons and daughters. My mother was not his carer, but his wife. In a sense, he was a demonstration of how dementia, a shadow and a blight, need not wreck a life.

He went into hospital for leg ulcers that were not responding to antibiotics and somehow got stuck there (the ulcers were slow to heal, there wasn’t a bed on the rehab ward…). There were visiting hours in the hospital and there was an outbreak of norovirus that meant none of us could get in to see him except for snatched visits. For more than four weeks, he lay in his bed and there was no-one to make sure he ate his food and drank plenty of liquid; no-one to read to him and talk to him and hold his hand and tell him he was safe and loved; no-one to be his advocate, his voice, his memory bank.

How I wish I had known then what I know now. My father came out of hospital slumped in a wheelchair. He was skeletal and incontinent. He could not walk and nor could he speak, only make a mumble of sound. We thought we could bring him back to the life he had loved, but we couldn’t.

Our campaign – John’s Campaign, named in his honour – was born out of this experience. I do not know how much longer my father would have lived if he had not gone into hospital, but I’m certain that the last part of his life was a catastrophe that we could have averted. One in four people in hospital beds have dementia, and hospital staff simply cannot cope with the demands that are placed on them – anyone visiting a ward will see this. Carers should have the right (not the duty; they often need respite) to stay with people with dementia in hospital, just as parents do with their sick children. They should be welcomed, not just because it is an obvious matter of compassion and moral common sense, but because it helps nursing staff as well as patients: nurses can nurse; carers can nurture, be the experts in experience, the cognitive ramp.

And over the brief life of our campaign – just four months – I’ve learnt how many hundreds and thousands of other people have the same story. Spouses and children have told us their own tales of heartbreak, guilt, rage and powerlessness, as well as stories of kindness and excellent practice. But more than that – nurses and doctors and charities have supported and helped us, and some (not all) politicians too. We are – in our tiny, single-issue way – part of a great paradigm shift. Times are changing. For a long time now the focus of health care has been on diagnosis, treatment and cure, but that’s no longer enough in our rapidly-ageing population. Person-centred and relationship-centred care is crucial – a system in which a patient is not just a collection of symptoms, but a person, precious.

Carers (about 700,000 of them, and rising) are the overworked, unpaid, unseen, unsung heroes of our society. They often don’t know they are carers. Out of goodness and love, they tend to people at the end of their lives. Yet hospital doors are often shut on them. The world is often shut on them, so that they are isolated and depressed. Of course, there are multiple practical measures that are urgently needed – increased allowances, changes in hospital policy, integrated health care, a properly funded NHS – but more than this we need to welcome carers, not just in hospitals but in society. People who live with dementia, and those who look after them, should be part of the great flow of life. And actually, that’s what our campaign is about.

This article was originally published in The King's Fund's Insight magazine, summer 2015.