In a plea for better understanding and care for patients, Nicci Gerrard describes how family helped her father cope with dementia – but five weeks in hospital ruined the end of his life.
Is there more we can do, as a professional body, or as a society, to care for those with dementia?
What can we learn from the care given to another vulnerable group - children?
My father was a doctor and then a businessman. He was very clever and also enormously competent; he could make things, fix things, solve problems, name trees and plants and insects and birds, grow vegetables, sing in tune, do cryptic crosswords, read maps, sail boats, tie knots, paint and draw, play chess. I always knew that with him I was in safe hands; nothing could go wrong. He was also modest, courteous, reticent, mild-mannered, mischievous, stubborn and sweet. For decades, my mother – who has a disablingly bad back, suffered multiple strokes and cancer – has been an invalid and my father was her devoted carer, shopper, chauffeur and ardent admirer. Looking after other people was part of his identity. As a friend said when he died, he was one of the good guys.
About 10 years ago, he was diagnosed with dementia. It was a slow but steady decline, with accelerations when he was ill or upset – he was particularly distressed when he was no longer allowed to drive. But he remained largely cheerful (or at least he hid his fear, only rarely speaking of going into the darkness).
And he could still have a happy life, although it was increasingly limited.
Then in February he went into hospital with leg ulcers that weren’t responding to antibiotics. He was there for five whole weeks, and for as long as I live I will regret that we didn’t understand sooner what this prolonged stay would mean. The ulcers were slow to heal. There was an outbreak of norovirus in the hospital, which meant that he wasn’t allowed visitors – although all of us did manage to sneak in every so often, it was only for a few minutes at a time. When his infection was healed, the hospital wanted him released to a rehabilitation ward because he had lost so much of his mobility, but no beds were spare and so his stay was prolonged further, until we insisted he leave.
Five weeks. He went in strong, mobile, healthy, continent, reasonably articulate, cheerful and able to lead a fulfilled daily life with my mother. He came out skeletal, incontinent, immobile, incoherent, bewildered, quite lost. There was nothing he could do for himself and this man, so dependable and so competent, was now utterly vulnerable. He could not sit up. He could not turn over. He could not put one foot in front of the other. He could not lift a fork or a glass to his mouth. He could not string words into a sentence – indeed, he could barely make a word (except to say hello, to say thank you, to say that he was lucky). He did not know where he was, who most of his friends were, sometimes perhaps he no longer knew who he himself was.
He was alive, but he did not have a life.
I am certain that if he had not lain in hospital for five weeks, with no one who loved him to take care of him, he would not have descended into such a state of incapacity.
It wasn’t really the fault of the doctors and the nurses. They healed his infection, they put food and drink beside him, almost all of them treated him with respect and genuine kindness. But they left him to himself and couldn’t spend hours making sure he ate and drank. They couldn’t brush his teeth and shave him and comb his hair and read poetry to him, do crosswords, play chess, talk to him, hold his hand, tell him he was safe, keep him anchored to the world he loved.
It was as if all the ropes that tied him were cut over those weeks and slowly he drifted from us. We thought that when we got him home we could draw him closer to the shore. But he was too far out. Three weeks ago he slipped from us at last, over the crumbling line that separated him from death.
I write this now not because it’s a unique story, but because it’s not. Hospitals are full of demented people who are ill, bewildered, frightened and alone.
It is unimaginable now that children used to be left in hospital without their parents; that battle was won long ago, and NHS advice to parents of children in hospital is clear: “Stay with your child as much as you can'. Hospital staff have found that children often adapt better to a hospital if their parents stay with them for as long as possible.
It’s unbearable to think of a child alone and uncomforted, and I cannot see that the needs of patients with dementia are any different. They are as vulnerable as a child, and can be as scared, distressed and disoriented as a child would be. The effect on their future mental health can be catastrophic, as it was for my father. Carers should be allowed to stay with those suffering from dementia. It should not be a duty but an inalienable right, a matter of moral decency and simple human kindness.
There is so much that needs to be done in our care of old people: a whole change of culture. This is one small thing, but it’s achievable and seems important.'http://www.theguardian.com/society/2014/nov/29/nicci-gerrard-father-dementia-hospital-care-elderly?CMP=twt_gu
Should funding be allocated for carers to join family in hospital with dementia? Is this a good use of resources?
What do you think?
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It is proposed that family carers should be allowed to stay in hospital with those suffering from dementia