Wendy Mitchell spent twenty years as a non-clinical team leader in the NHS before being diagnosed with Young Onset Dementia at just 58. Wendy recorded her new life in a blog which lead to her book, Somebody I used to know, a Sunday Times Bestseller.
I was diagnosed with Young Onset Dementia nearly 6 years ago now, when I was 58 years young. Young Onset simply refers to people who are under 65 and of working age.
The word ‘dementia’ had never entered my vocabulary and like many, I thought it only affected older people. When I heard the word dementia, I thought of the end stages because no one tells you any different. However, I soon realised that dementia has a beginning and a middle and so much life still to be lived long before the end stages. We simply need the support of those around us to help us live our life differently.
People often ask me ‘what’s it feel like to have dementia’? Well every day is a different day. You have good days and bad. On bad days, it’s like a fog descends on the brain.
One analogy I use which may help some, is that of driving. When you’ve passed your test, you drive automatically without thinking, change gear, turn right, stop, start, all without thinking, but when you’re learning you must take each manoeuvre step by step and think about it. Dementia has taken me back to being a learner driver and I must consciously think of how to do everything step by step.
This is a complex brain disease, but our experiences are individual. Imagine the brain as a string of fairy lights. Each fairy light representing a different function of the brain with some lights flickering on and off. Dementia affects our ability to do something one day but then we can do this perfectly well the next. When the light fails altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook, and I can’t; that’s why they still feel hunger and I don’t. I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected.
We are all different in the cells it affects.
It’s also important to remember that dementia isn’t just about memory. So many of our senses are affected and our emotions play a much bigger part in our lives. Whereas my old self could get angry at injustice, dementia has stripped many emotions away from me. I am no longer capable of feeling anger or jealousy . I have three states – happy, sad or content. Some of my playmates, as I call them, feel anger above all else – I think I’ve been left with the kindest ones…
My emotions are heightened now as they are in many people with dementia. How people make us feel takes over from the detail of any visit, any conversation. I always remember how people make me feel even if I’ve no idea who they are. Also, a wife may not recognise her husband if she has regressed back to being younger. She will be expecting her husband to look younger too, so will be confused by this older man. I’ve already apologised to my daughters if I don’t recognise them, but I’ll always know I love them, and they mustn’t forget that. That’s why it’s important to live in our world because we can’t live in yours.
Having said that, if you do live with someone with dementia, don’t ‘disable’ loved ones before they’ve lost the capacity to do something. For the kindest of reasons, you may want to regularly do something for that person – but if we don’t repeat this activity day after day, we forget, and then you’re stuck with doing it for us.
My daughters used to do loads of things for me in the beginning, all for the kindest of reasons. They’d help me with my coat on for example, but I could still put on my own coat. If I suddenly stopped and allowed them to do it, within a few weeks I would forget how to do this. I told them that if they continued, they’d have to come to my house every time I wanted to go out – they stopped immediately.
Sometimes it’s a matter of helping us to learn new ways. Many of my strategies and experiences are documented in my book.
And finally, never give up on us. Glimpses of magic can appear every day, you just have to look for them.
“Dementia has taken me back to being a learner driver.”
“It’s important to live in our world because we can’t live in yours.”
“I can type words far quicker than I can think and speak them.”
“Dementia has so much life still to be lived long before the end stages.”