“People with Alzheimer’s are not rational, but, God, they are so creative, they think in such a different way,” says Anne who lost her father in October 2018, after he had been suffering from Alzheimer’s for ten years.
“One day he was spreading butter with the fork and my sister got annoyed, but I started seeing him just as a creative person and I came to love my dad because of the disease.”
People with dementia forget how to read, the meaning of words, how to walk and eat. Being scared of losing these abilities, society tends to lose empathy with them.
She has been involved in charities and volunteering. “Of course at the heart of everything was raising awareness and money for the Alzheimer’s Society.” When she found out about the Trek26 marathon on her birthday, 1st June, she immediately applied and has been raising money since then. It has become a mission. “My dad was a big walker. Thanks to him I got into the habit of waking all around London.” The trek distance will be 13 or 26 miles and will be around the most iconic sights in London.
Anne also organised a big fundraiser right after the marathon, on 6th June, in a creperie in Brixton, for the Alzheimer’s Society.
“I think for me, well it was always about raising money but, at the same time, it really wasn’t. It was about raising awareness of the disease, and I think it was actually quite a selfish thing it the sense that when you’re 22 and you lose your dad or whoever with such a disease, you need to create yourself a community, to find a way to talk about it.”
Despite doing a lot for the Alzheimer’s Society she has other career plans. She’s studying PR at UAL and working for the Canadian High Commission.
“Working for the Alzheimer’s Society would have meant hearing people talking about it all the time,” says Anne. “I was lucky, in the sense that my dad was incredible, he was constantly laughing.
“Some people scream, become very aggressive and reject you. My dad wasn’t like that at all, even when he was in agony. Working in there would have been facing people who weren’t that lucky.”
Once, Anne and her father went for a walk, while she visited him in his retirement home. “Normal people would be like, ok, he’s gone, I’ll just take him where I want.”
But she let him decide. He couldn’t talk but, as always, they found a way to communicate: “I held his hand, as he was struggling walking, and I just let him choose. So he would press left or press right to guide me.
“Then he literally stopped me and we actually went to crêpe shops and we had crêpes and I had chocolate on my nose
and we just started laughing. But that day I let him lead me.”
Mayor Sadiq Khan’s last year declared he would make London a dementia-friendly city, through investments in public transport, infrastructure and access to culture. Is it a realistic plan?
“People” were the main problem in her father everyday life, she said. Defining and understanding dementia is difficult. It has stages and is so unique in each case that a dementia-friendly city is just too vague for her to picture.
People with dementia are aware of their condition. Trying to control them and make them fit into schedules can only increase anxiety.
Anne’s advice to relatives of people affected by dementia? “Don’t control them, believe in their creativity and laugh it out. Let them spread butter with their fork.”
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