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Nicci Gerrard – her husband Nicci is a journalist and writer who writes the best novels written in French. She won the Orwell Prize in 2016 to reveal UK's social maladies for her report on care for asthma patients in the UK.
What motivated you to write that book?
I did not want to write my father's memories [John Gerrard, who died in 2014 after 10 years with dementia]partly because there are so many wonderful memories about dementia that I have no reason to add someone else, and it is partly an individual and no need for confidentiality. But I had to write a book about dementia, she witnessed what was happening, and then started a campaign of my friend John and John. I have been thinking more about things that can be lived with dementia, and it also teaches us how we feel, how we estimate people, and how vulnerable they are. It was a great shock to think of everything.
Tell us about your campaign and your willingness to change it.
Before his father went to the hospital, he did a great job – gradually it was a very mild fall. Then it was an explosion in his case, as his five weeks when he was in the hospital needed more of us, we were not allowed to see him. In retrospect, the guardians seemed to be strict and unnecessary when they were not hospitalized and wanted to change them – and the change seemed simple.
But this is not easy …
I thought it would be the shortest campaign in history: it's one of the rare recommendations, and there's nothing to worry about. But the NHS is fragmentary and bureaucratic, so changing the culture in every hospital – there was much to talk to the nurses and join in the movement's engagement. Now any emergency hospitals in the UK and any emergency hospitals in the UK have signed the patient.
How do you think we can withstand the aggression of society?
Yes I will. We are still not good, but 40-50 years ago the world has changed dramatically. This is still a stigma for my dad's descendants. They do not talk about it, they often try to dismiss it and try to hide from them, and it will be very difficult for them and their surroundings. But the younger generation tells about it and writes books when it's like dementia, like Terry Patchett, and is part of that story. People are scared of it, and they are right: it's scary, but when you try not to think about it, it's scary.
Is it encouraging for those who are upbuilding?
Absolutely. First of all, when somebody's dementia, they still have the same person, they are still with us in the world, we have to admit that they have value. Whether people with crazy minds look like fools or even objects, they are not foolish – they have a brain disease, but they can still contribute.
In a big sense, dementia means to be human. In the West, we value autonomy, agency, youth, energy, goals, self-reliance, but what happens when we are not young, healthy and autonomous when we are kind to others?
Was this a difficult book to study?
No, on the contrary. There were times when my ancestors died and later, and I felt the tragedy here. But to study the book, to find people with dementia, thinking, and ideas, I felt very optimistic. It's not just a hopeless event, it's a story of love, courage and fairy tales.
Have you ever encountered any works, literature or anything else that has captured something that looks like a dementia?
Novel Unreasonable, In the early 1980s, written by Dutch writer J Bernlef, was beautiful and sad and very beautiful. Game Dad Florian Zeller is also wonderful because he introduces the process of dismantling. These works are about dementia, but they ask you to stick to reality.
Are you afraid you are looking at the dementia deeper?
Yes. This does not mean that I think it is much harder. I'm just scared to think more about that. It's like giving light to an area that's not trying to see it. Perhaps I think I will try to find my way, but I do not want to leave the party before leaving the party.
Will You Take Your Life Before the Demonstration Begins?
Yes. But I'm keen to talk about it because it was really difficult. You had to do this when you still had the opportunity. Maybe when he came to visit, I once again climbed a mountain and made a glass of red wine, and another family …
Did your writing help you to cope with the death of your father?
Yes. It allowed me to think patiently, to recognize it and welcome it. It was as if the patient had tried to sign it. I want to use this book in a broad sense: to put a hand on the treatment of the disease, it can be so chaotic and unstable and scary.
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