Wendy Mitchell, Author
I was diagnosed with dementia on the 31st July 2014. I might not have much of a short term memory, but that’s one date I never forget. It was the date my life changed forever.
I prefer ‘Dementia Appropriate’ or even more simply, ‘People Friendly’. After all, I’m always saying, if you get it right for people with dementia, you get it right for so many other people in society.
My biggest problem, when first diagnosed, and even now to some extent, was society and people in general. The stigma associated with dementia suddenly made me invisible. If I was out with my daughters, or at a healthcare appointment with one of them, suddenly people started asking them questions about me instead of asking me myself. I’d be stood right next to them, yet no one spoke to me. When people hear the word ‘dementia’, they skip straight to the end stages, ignoring the fact that it has to have a beginning, a middle with still so much life still to be lived. So why is this? Fear? Lack of understanding? When I was first diagnosed, I was so shocked at the lack of understand by the general public, but what was more worrying was the lack of understanding about the lived experience by healthcare professionals.
I broke my wrist last Christmas, shattering it in many places and dislocating it. The Consultant called me and my daughter in to discuss the possibility of an operation. His first words, before hearing anything from me were,
“On paper, you don’t need an operation, you’ve got dementia. What do you need a left hand for?”
As you can imagine, I was stunned into silence. Luckily my daughter told him why I needed a left hand, then I found my voice and asked him:
“I need a left hand, just as much as you or anyone else”
He made that terrible assumption that because I had dementia, I wasn’t worthy of an operation. He had the grace to back down and agreed to the operation. How many other people may have accepted his professional opinion and not had the confidence to question?
My GP, on the other hand, is wonderful. Since reading my books she treats me totally different. I take a notebook with the reason for my visit. She then writes the answer underneath so I can show my daughters. This means I still have the dignity of looking after my own health. More importantly my daughters don’t have to take time off work to accompany me. I have the same GP for every appointment and because I can no longer use the phone, she allows me to contact her secretary to make an appointment or ask her a simple question. Such simple adaptions. Dementia strips away so much from you that any bit of dignity we can hang on to is so precious.
I’m lucky I live in the most wonderful village with a sense of community I’ve never experienced anywhere else. During Covid, more people got to know me, but they knew me as Wendy the camera lady as I used to, and still do, go out taking photos of the beauty we’re surrounded by. They saw my talent before they realised I had dementia, so this enabled them to see dementia in a whole new light. My villagers support me but don’t even realise as they make me feel part of the community.
The moral of this piece is – see the person, not the dementia.
