For 10 years before he died, Nicci Gerrard’s father John had dementia.
Now the author, who writes under the name Nicci French with husband Sean, has written a book about the cruel disease which stole her father from her.
Here, in an extract from What Dementia Teaches Us About Love, she shares the story of her father, his legacy for others, and the amazing people helping those living with the condition.
Before he could no longer say anything, my father said to me: “Something is wrong.” Sitting on the side of his bed and staring down at his unlaced shoes: “I don’t know what’s wrong. Something. What?”
What does one say to such a question? “Nothing is wrong?” (Everything is.) There is such an urge to reassure: “You’ll be all right.” (You won’t.)
Or this: “There is something wrong with your brain. You have a complex brain disease. There is no cure.”
My father might have been absent-minded, but he was very good at remembering things – the speed of light, the dates of battles, the periodic table, the Latin names of plants and the English ones of wildflowers, the bones in the body, mathematical equations and chemical formulae, whole chunks of poems, the colours of flags, capital cities.
Then he began to forget and the painstaking acquisition built up over a lifetime gradually fell away.
When did my father’s dementia begin? We don’t know. We’ll never be able to put a finger on the danger spot.
I’m sure my mother sensed it before the rest of us. But what about him? When did he hear the boom of the foghorn? Was he very scared? Was he sad?
The disease crept into my father’s life slowly and silently, no broken windows or alarm bells shrilling, just occasional rustles in the night, a creak on the stairs, odd things missing from their usual place but not missed.
Of course, I look back now and I recognise the signs. When he struggled to remember the name of a flower that grew in the hedgerow.
When his hand, holding a mug of tea, shook. When he lost his hearing aid yet again, lost track of what he was saying, lost his way (but we all do that). Scraped the car against a gateway. Left the key in the lock.
When we asked him the time and he told us the cricket score (but he always was absent-minded).
We didn’t talk about it at first. When is the point at which you say: “Do you think
There came a time when we all knew. He went to see a doctor. He had his memory test. Eventually, he received the sentence, hedged about with reassurances and strategies and tact, but there it was nonetheless: you have dementia.
My mother is a fighter, she believed that together they could face down the disease and beat it. My father is a stoic. (Was a stoic.) He believed you must simply, and with dignity, endure what life hands you.
His role in life had been one of steady competence – he was the protector and now he needed our protection, the carer, and now he needed our care.
He didn’t fall apart or articulate his fears, but every so often he took to his bed, to lie under the covers, shaking.
Life went on around him – the hum of the vacuum cleaner, the rise and fall of voices, the chink of cutlery, a phone ringing somewhere, a dog barking, the smell of baking, of garlic frying, my mother coming softly into the room and standing beside him – and he would lie there until the shaking stopped.
The story of dementia is also the story of those who care for people living with the illness. And if people with dementia are missing people, so too are their carers. In the UK, one in eight adults are carers (that’s 6.5 million people), and almost 60% of these are women.
The carers of people living with dementia make up a large portion of this vast, invisible army.
My mother never had to become my father’s “carer”. She remained his wife, living with him and loving him as he inched towards self-loss.
In the final, terrible year she could not possibly have looked after him: she was in her 80s, disabled by chronic back injuries and registered blind.
A rota of professionals came in to do the jobs – lifting, cleaning, dressing and undressing – that are so bodily and for many intimate carers so distressing. So, by and large, she remained his wife, and he her husband. She was lucky in this.
My father loved home. Although his most vivid memories in his dementia years were of being carefree and unattached, in unfamiliar places, he was a homebody. My mother is an explorer at heart, often restless, but my father loved returning to his place of safety.
Above all, he loved his garden – planting, weeding, pruning, making bonfires, identifying insects and wildflowers, watching small birds in the undergrowth, getting his hands dirty.
In his dementia years, the familiarity of home was increasingly important – everything in its right place, everything known, the shape of the day a comforting repetition, the clock on the wall showing the time, the flowers and plants outside marking the seasons.
My father’s dementia was quite advanced before he left home for a few weeks, to have his leg ulcers healed.
He came back a month later, but he never came home. He never came 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 hard-pressed 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).
Top news stories from Mirror Online
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.
- Vietnamese convicts’ children – Conclusion: A death-row prisoner’s story
- Sacrifice individual stories to tell the larger truth
- Daughter of the vampire
- The story of human life
- Boomer sex with dementia foreshadowed in nursing home
- Photographer traces the heartbreak of war
- Stories of "reincarnation" in Vietnam
- A daughter's Vietnam return forces a father to confront his past
- Vong co captures heartbreak's harmony
- Saigon classics: the stories behind Ho Chi Minh City's oldest eateries