My father went into hospital and came out a broken man
A daughter’s heartbreaking story that raises disturbing questions about the way we treat the elderly
MY FATHER would often say in the years before his death how lucky he was: lucky in his family, his friends, his life. Even when he barely had any words left to him, he would repeat this belief. But he was not always so fortunate.
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, mild-mannered, mischievous, stubborn and sweet. For decades, my mother, who has suffered multiple strokes, cancer and a disablingly bad back — has been an invalid and for years my father was her devoted carer, shopper, chauffeur and ardent admirer. Looking after others was part of his identity. As a friend said, he was one of the good guys.
About t en years ago, he was diagnosed with dementia. His was a slow but steady decline, although it accelerated when he was ill or upset — when he was no longer allowed to drive he was particularly distressed.
Yet he remained largely cheerful (or at l east hid his fear, only rarely speaking of going into the darkness) and was still able to have a happy — although increasingly limited — life.
Even this time last year we were still able to enjoy the festivities together. He celebrated Christmas with the family at my brother’s house in London and ate goose and pulled crackers and wore a torn orange crown on his soft white hair and teased the grandchildren and the dog.
There were over 20 of us round the table, and we sang carols, rowdily, after the meal. I remember that he did a solo of Once In Royal David’s City (he always loved singing; he had a lovely, true voice), while we listened with tears in our eyes.
And I remember he told stories about his past to the grandchildren. He even played a computer game (very badly) with some of them. He had always loved Christmas — he called it ‘ The gathering of the hordes’.
But putting up the decorations this month has reminded me of the lovely festive time we all shared, it’s hard to believe that was only 12 months ago.
For in February he went into hospital for five weeks — with leg ulcers that weren’t responding to antibiotics — and he was never the same again.
My father went in strong, mobile, healthy, continent, reasonably articulate, cheerful and able to lead a fulfilling life with my mother. He came out skeletal, incontinent, immobile, incoherent , bewilder e d, quite lost.
Before his admission, my father liked to go for slow walks, helped round the house (he was especially fond of washing up and mending broken china), saw friends, worked in his beloved garden, pottered in the greenhouse, ate with gusto, related tales from his youth, put food out for the birds he so loved.
LAST year, he went on holiday with us to sweden, where he had a sauna and swam in the lake and looked for mushrooms in the forest. He went to Turkey with my brother and sister and there are pictures of him sitting with his sketch pad among the wildflowers, very contented.
He celebrated New Year with his close friends. I sometimes thought of him as a great city whose lights were going out one by one, but slowly, so that you hardly noticed.
That is, until his hospital admission, which hit like a power cut. 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 winter vomiting bug, norovirus, in the hospital, which meant he wasn’t allowed visitors — although we all managed to sneak in every so often, it was only for a few minutes at a time.
When his ulcers were cured, the hospital wanted to send him to a rehabilitation ward because he had lost so much mobility, but no beds were spare and he had to stay in the general medical ward. Eventually, we insisted he leave.
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, could barely make a word (except to say ‘hello’, ‘thank you’, or to say he was lucky). He did not know where he was, who most of his friends were, sometimes perhaps he no longer knew who he was himself.
AFTER
discharge he came home to my mother, his wife of 61 years, but had to have 24-hour care. We also hired people to come in during the day to lift him into a wheelchair and take him into the garden, or help with routines.
He was washed, had food and drink put into his mouth; he lay in his bed day after day and night after night and his family and friends spent as much time with him as possible. But sometimes it was impossible to tell if he even knew we were there, still loving him. He remained indelibly himself, sweet-natured and courteous, but he did not know who he was. He was alive, but did not have a life. Of course, my father had dementia: perhaps this is what he would always have come to finally. But not so soon, not with such terrifying swiftness, a sudden and heart-wrenching obliteration. I am certain if he had not lain in hospital for five weeks, with no one who loved him to care for him, he would not have descended into such a state of incapacity.
It wasn’t the fault of the doctors and the nurses. They healed his infection, put food and drink beside him, almost all 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 away. We thought that when we got him home we could draw him closer to shore. But he was too far out.
He lived like that for nine months. Five 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.
During the time my father was in hospital, my mother was also there for a week, just down the corridor. Both were in general medical wards, but there were only old people there. Almost every patient was demented. Some were quiet like my father, lying passively in their beds, others were in a state of terrible distress.
There was a man who shouted and shouted for help. There was a woman who cried out that she had to get home. They moaned, wept, begged, whimpered. It was like a scene from hell. How did we ever get to this state?
It is unimaginable now to think that children used to be left in hospital without their parents. That battle was won long ago and NHS advice to parents of sick children is now clear: ‘Stay with your child as much as you can.’
Hospital staff have found that children often adapt better to time on the wards if their parents stay with them for as long as possible.
‘Reassure your child that you will be staying by their side, and let them know that the hospital is a safe place to be.’ (This is from the Children in Hospital section of the NHS website.)
I cannot see that the needs of patients with dementia are any different from those of sick children. They are as vulnerable as a child, and can be as scared, distressed and disoriented. The effect on sufferers’ mental health can be catastrophic, as it was for my father. Carers should be allowed to stay by the bedside of those living with dementia. It should 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. It is no small thing, and it’s achievable as well as important.
This will be the focus of my new campaign, and that of friends who fear for their relatives, because it’s the only way I can think of turning a situation that was so sad into something hopeful. What happened to my father, what is happening to thousands of others, must not be allowed to continue.
I think of him as he was in hospital: so thin and confused, with his white hair in tufts and his sweet smile. My father looked after people all his life. He was a good man who believed in the goodness of others. He was a man of dignity, integrity and optimism. Yet, with the best of intentions, we abandoned him to a system that could not care for him in the way he required.
At his hour of need, we didn’t rescue him; we let him go. It needn’t be like that; it mustn’t.
A NEW campaign by Nicci and her friend, writer Julia Jones, whose 90-year- old mother has Alzheimer’s, is asking for dementia sufferers in hospital to have the same rights as sick children so their families and carers can remain with them for as long as they want.
Some 800,000 people have dementia in the UK and one in four hospital beds is taken up by people suffering from the condition. Of the people with dementia admitted into hospital from home, one third never return to their home again. This article first appeared in The Observer.