No-one knows everything about dementia. Let me put that another way, no-one knows much about dementia. We know bits and pieces but as far as I’m aware, there isn’t a definitive, widely-agreed cause and there certainly isn’t a cure. The search goes on and more money than ever is being committed to that search but the financial clout of dementia research still pales into insignificance alongside the money devoted to finding cures and developing treatments for cancer. It isn’t a contest and, of course, no-one believes we should spend less on cancer research. It’s just that the chasm between the two should be much narrower.
I lived alongside Mum and her dementia for the best part of a decade and in that time, I learned – sometimes the hard way – ways to support someone with that pernicious disease. And my education is continuing more than a year after Mum left us. I have just finished reading a book which I would recommend to anyone for whom someone close has been diagnosed with a form of dementia.
Wendy Mitchell was diagnosed with dementia at the age of 58 in 2013. Since then, she has been a tireless champion for people living with the disease. I have been inspired by her words as a speaker at several conferences and now by her words on the page.
Seeing dementia through the eyes of someone living with it day-to-day is a privilege. So often we feel we are doing “the right thing” but that might not be the case. I remember visiting Mum and tidying up around her. I probably just contributed to greater confusion. I tried not to take over when I called in or stayed but I know I did at times. I wish I’d taken more time to encourage Mum to do things with me around the house, no matter how long it took.
I’m not beating myself up about it. I did what I thought was best at the time but now, thanks to Wendy’s words and conversations with others living with dementia, I know better. And that’s the thing about dementia. We’re all learning together – scientists, doctors, people with a diagnosis, people without a diagnosis, carers, family and friends caught up in this nightmare.
Wendy, I wish you hadn’t had to write about somebody you used to know, but I’m thankful you did. I just wish I’d read something similar years ago.