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Nicci Gerrard is a journalist and activist who writes novels with success with her husband under the name of Nicci French. She won the 2016 Orwell Award for exposing the social ills of Britain and reporting on the care provided to dementia patients in the UK.
What prompted you to write this book?
I did not want to write about my father [John Gerrard, who died in 2014 after 10 years with dementia]partly because there have been many wonderful memories of dementia and I saw no reason to add another, and partly because he was a private man and I did not want to invade his privacy more than necessary. But I needed to write a book about dementia, after witnessing what he had gone through, and then launching John's campaign with my friend Julia Jone's. I found myself thinking more and more about what it means to live with dementia, and also about what dementia teaches us about our perception of ourselves, the value we attach to people, and what is the vulnerability. This has profoundly changed the way I think about all these things.
Tell me about the campaign and what you have decided to change.
Before his father went to the hospital, he was doing quite well – it was a gradual decline and quite mild. Then there was this abrupt break in his health because, during his five weeks of hospitalization, when he needed us most, we did not have the right to see him. In retrospect, it seemed cruel and useless for caregivers not to be welcomed at the hospital alongside their loved ones and it was imperative to change – and it seemed so easy to change.
But it was not so simple …
I thought it would be the shortest campaign in history: it's one of those very few proposals where there is no problem. But the NHS is such a fragmented and bureaucratic entity that it was so important to change the culture of each hospital – there was a lot of grief, arguing with the nurses and making sure that they joined the movement at their own pace. But now, all acute care hospitals in England and almost all in the UK have, one way or another, enrolled in the campaign.
Do you think our society is improving in the face of dementia?
Yes. We are not good enough yet, but the world has changed so much 40 or 50 years ago. For my father's generation, the stigma remains. They do not talk about it, they often try to deny it and hide it, and that can make it even more painful for them and for those around them. But younger generations are talking about it and writing books, like Terry Pratchett when he had dementia, and that's part of the conversation. People are very afraid of it – and they are right: it is very scary – but it gets even more scary when you try not to think about it.
Do people with dementia have something to teach us?
Absolutely. The first thing to say is that when a person has dementia, she is always the same person, she is always in the world with us, we must still recognize that she has value. I have seen time and again how people with dementia are treated as stupid or even as objects, but they are not – they have brain disease, but they can still contribute.
In a broader sense, dementia questions what it means to be human. In the Western world in particular, we attach great importance to autonomy, agency, youth, vigor, determination, self-sufficiency, but what happens when we do not Are we younger, healthy and independent when we are at the mercy of others?
Was it a painful book to look for?
No, almost the opposite. Before and after my father's death, there were times when I was everywhere and it looked like a tragedy. But by researching the book and meeting people with dementia, reflecting and reading about it, I felt immensely more optimistic at the end. It's not just a story of despair, it's a story of love, courage and adventure.
Have you encountered works, literary or otherwise, that describe what dementia is?
The novel Out of the mind, written in the 1980s by a Dutch writer by the name of J. Bernlef, he is handsome and sad and quite extraordinary. The game The father by Florian Zeller is extraordinary too, because it decreed the process of dismantling dementia. These works concern both dementia, but they also lead you to question the stability of reality.
Are you less afraid of dementia now that you have examined it in detail?
Yes. That's not to say that I think it's less painful. I fear it less because I thought about it more. It's like shining a light in an area that I tried not to look at. I must say that maybe, I hope, I would try to find my own way out – not really out of fear, but because I wanted to leave the party before the party left me.
You mean you would take your life before dementia settles?
Yes. But I hesitate to say it because it would be very difficult. You must do it as long as you have the capacity. In the end, I thought maybe again: one more walk in the mountains, a glbad of red wine more, another meal around the table with my family …
Did the writing of the book help you cope with your father's death?
Yes. It was a way of giving me permission to think patiently about what had happened, to recognize it and to say goodbye. It was like trying to put a healing hand on it. And that's what I wanted to do in a broader sense with this book: to make a healing gesture on an illness that can be so chaotic, messy and awful.
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