Daily Mirror (Northern Ireland)
Miracle workers who bring lost souls back from the ‘underworld’
, and this. h his entia unatwas a rer at oved
en – aking wildn the rty. iarity ant – thing ay a n the s and ns. quite a few d. ut he home to himself. There came a point when my father was no longer living with dementia, but dying with it.
He went into hospital for treatment that was routine but that he badly needed, and for all sorts of complex reasons got stuck there for five weeks.
During that time (I’m wincing as I write this) he was very often quite alone.
The hospital had rigorously enforced visiting hours and then an outbreak of norovirus, so that for many days on end visitors were not allowed in at all. The category of visitor in this case included the family and carers.
The nurses did their job of nursing, in a ward that, though general, was largely made up of people with dementia and where many patients required a level of attention they could not possibly receive from hardpressed hospital staff.
The doctors doctored. My father, who was a very polite man, lay quietly in his bed. He didn’t eat, he didn’t drink, he didn’t walk or talk or smile into the smiling face of someone who loved him.
No one held his hand and read him poetry. If someone had asked him how he was, I’m sure he would have genially
said: “Very well, thank you.” (Until the day he couldn’t find the words to answer).
My father came home at last, skeletal, immobile, inarticulate and helpless. But he never went upstairs again, or walked in his garden, or danced with my mother, or seasoned the gravy, or teased his grandchildren, or lifted a glass of red wine.
My father was one of the lucky few who die at home. He left us on November 9, 2014. No last words. My mother had said good night to him and kissed him.
She was in the bathroom cleaning her teeth. His carer was lifting him into a comfortable position on his pillows. He gave a small cough and he died. We are frail creatures at the last. The breathing stops and a whole world ends.
In December 2014, I launched a campaign, together with my good friend Julia Jones. It was named after my father.
John’s Campaign has a very simple principle –that the carers of people with dementia should have the same right to accompany them in hospital as parents do with their sick children. Now, every acute hospital in England has made a commitment to John’s Campaign.
There are John’s Campaign posters on the doors of hundreds of wards saying that the carers are welcome.
Hospitals have traditionally been places of cure. Sometimes people can’t be cured. They can be cared for, recognised, seen not just as bodies, but as embodied minds.
In every country, it is increasingly understood by healthcare staff that hospitals are hazardous places to be for people with dementia.
Huge efforts are being made to reduce the risk they pose, which is where John’s Campaign comes in.
But the wheels of change turn slowly and – in the meantime – intimate tragedies unfold. Extract from What Dementia Teaches Us About Love published by Allen Lane, priced £16.99. Copyright © Nicci Gerrard 2019. penguinrandomhouse.co.uk. I spend the day with Jo, the dementia lead at a large hospital trust. Self-deprecating and humorous, Jo is an invincible champion for people who live with dementia.
Jo calls herself, and colleagues Aishlene and Lucy investigators. They find out the person’s work, family, interests, likes, favourite foods, any of the triggers that might bring them back. This bringing-back can seem miraculous – like someone returning from the underworld.
I go round the wards with Aishlene. We talk to patients, take their hands, look at their photos, meet their relatives. Aishlene gives them pictures she has printed out. A cricket team. Flowers. A familiar face. One of them loves reggae, and she puts on music. He half-dances in his chair, shuffling his feet on the floor.
Then we sit high up in the labyrinthine hospital, in the small room that is the headquarters of their investigations.
Several desks and computers have been inserted into the small space. The shelves are crammed with squeezy pigs, squashy balls, aroma stones, soft toys and twiddlemuffs.
The phone rings constantly – relatives who want advice and reassurance.
The stories they tell are ones of salvage. A man who was continually agitated is now calm because they can show him picture books that will take him back to his past. The couple who cared for each other devotedly and who were admitted to hospital together when the husband was in his last days so they need not be separated.
Another couple who died within a day of each other, the husband lying beside his wife as she breathed her last, and then it was his turn. The severely depressed patient who felt he was in prison there and so they wrapped him up, put him in a wheelchair and took him into the streets. (“You should have seen his face – he was in awe of the air!”)
The woman who was always crying out and distressed. Her family said that it was normal, she was always like that. “It’s not normal to be always agitated. She was telling us something.
“Eventually we discovered that the woman had arthritis and it was uncontrolled pain that was making her so upset.
“We have given her pain patches and now she’s out in the corridor, playing bowls.”
Or the man with 17 adored grandchildren who found great solace in the baby dolls that Jo and her team gave to him to look after.
The woman who had never been seen naked, even by her own husband, with whom she’d had three children. “She was refusing to have a shower and no wonder. At the very least, she shouldn’t have a male nurse.”
The man who loved numbers and was very agitated. “We gave him sums, which we had deliberately got wrong, to mark.”
The woman – stick-thin and floridly psychotic – who thought Tony Blair was trying to kill her. She would spend her time crouched under the nursing station, taking cover. “She was very religious so we took her to the chapel, where she had a rapturous evangelical moment, crying out, ‘Praise be to God, and where am I?’.”
People with dementia, they tell me, never do what you expect. “You have to go in at a deeper level. You have to think outside the box. And then, just to see the difference – any difference. To see someone smiling when you’ve been told they never smile. Just to get some of what is left inside.”