I lost a dearly loved one to dementia twenty years ago. I still recall the most painful moments, like the first time they didn’t hug me back. Since then I’ve watched other family members suffer from this dreadful condition, and I’ve seen the stress it causes caregivers. Then there’s the stigma – dementia can be isolating for so many reasons. People don’t know what to say to sufferers, they’re scared of the unpredictability, the emotions, the loss of memory and personality changes.
That’s why being open about it is so important, to break down these barriers and help people face their fears and realise that, really, there nothing to be afraid of when interacting with friends, family, strangers, with this condition. Also to show that a diagnosis isn’t the end, it’s the beginning of a new chapter that, yes, is oh so difficult, but one that can still hold moments of joy.
I recall the humour amid tragedy and how, twenty years ago, my loved one asked who I was. It was gut-wrenching but I explained my relationship to them and at first a horrified look crossed their face. But then we both started laughing and a spark of their old humour appeared – despite the sadness, this was a joyous moment to be savoured.
Wrong Order Cafe, in my new book, The Memory of You, was inspired by a Japanese pop-up restaurant I read about called the Restaurant of Mistaken Orders, manned by servers with dementia. I immediately connected to the concept. It’s so important not to cast people with dementia to the outskirts of society. They still have a place amongst us. Can still add value to their own and other people’s lives. Even as the condition progresses, they are still *them*, with lucid episodes to be cherished.
Almost one million people are diagnosed with dementia in the UK, there are 700,000 carers and 120,000 diagnosed who live on their own. That’s the other really important reason to talk about it – to push for more comprehensive and accessible social care. Currently there’s little formal support out there, patients can be given a diagnosis and then simply pointed towards the Alzheimer’s Society. A frightening time not only for sufferers but their bewildered carers as well, who must adapt their own lives to look after their loved one, often losing friends, work and hobbies in the process – and money as well. Much more is needed in the way of financial support, along with funding for research.
It’s a scary thought that we too, one day, might suffer. It’s taken all this time to feel I can make dementia the main theme of one of my stories and, I’m glad to say, the process has felt cathartic. More than that, I was surprised how it left me with a sense of hope. I loved creating the characters of Reenie, Fletch and Norm, and the cafe that became a hub of support for them and their caregivers, and anyone else, affected, who popped in for a coffee.
We need places like Wrong Order Cafe. We need to make dementia something communities embrace, not repel, because most of us, directly or indirectly, will have to deal with it, at some point. Progress has been made developing new drugs, but there’s still no cure, it’s not going away, so there’s nothing to be gained from shunning those in the thick of it. Love, laughter, respect, compassion and support, realising life doesn’t have to be perfect to be worthy – that’s what The Memory of You is about.
You can get your copy of Samantha Tonge’s new book The Memory of You here: https://mybook.to/memoryofyousocial
