Living with young onset dementia
Tracey Shorthouse was diagnosed with dementia four years ago in her mid-forties. She can no longer work as a nurse - but she uses her experiences to help others
Produced, filmed and edited by James Sandy. Special thanks to YoungDementia UK
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People always say dementia is memory loss, that you can't live on your own, that you can't do anything. You need care all the time. You just can't even go out, which actually isn't the case.
I certainly don't fit any of these stereotypes.
When I first got diagnosed, I was probably the only young person-- first young person-- my age, in my area.
There's no right or wrong with young-onset dementia because what's the difference. When you have dementia, you never know how the dementia affects you.
I have posterior cortical atrophy which is what Terry Pratchett had. So posterior is the back of the brain, and cortical is the visual cortex in the back of the brain. And so also-- that basically means that the brain changes what the eyes see. So what I see isn't always what's happening. So I don't drive anymore because I went through two red lights because my brain told me they were green. That's sort of how it's changes. I can't see very well down here or at the sides very well. There's a lot of dangers out there, I tell you.
Potholes in the pavement and things like that is a nightmare.
Being a nurse, or retired nurse now, has helped me hugely about knowing that onset of my dementia, also knowing what's going on with my brain, and trying to be kind to myself as well. Living well and being active is the most important thing, really. The more that you're supposed to do, the more walking I do. It makes me more alert. So yeah, if I feel tired I have to go to the gym. And it boosts you back up again and I feel like I got some electricity inside me. It's like a little drug, I suppose, and it gives me freedom. in a funny sort of sense. The thought of somebody coming in and taking over my life, or telling me what I should be doing. I feel like decking them.
Because I wouldn't like-- I would hate people telling me what to do in my life. I think living on my own is what helps. Living on my own means I have to, have to push myself. I haven't got anybody here to do it for me so if I find I can't do something, I think, well, why can't I do it. I want to find out why I can't.
Using the computer was a big thing for me. I got frustrated. I remember wanting to throw it out the window. I think you can quite understand why I couldn't remember how to use the thing. But I don't like giving up or anything so I'm quite stubborn. So I've actually relearned how to use a computer. I can't type as quickly as I used to be able to. It's only two fingers work, but they're quite fast. And it's things like that. It's just I don't ever want people to say to me, if I hear-- which I have heard quite a bit-- or you can't do it because you have dementia. Which is a huge excuse that people say that. I want me to do it. I want to do it more just to prove them wrong.
I like having a sense of humour as well. I laugh about myself quite a bit. People will tell you, ooh you mustn't laugh about that, about your dementia. But I find it's silly. It's my dementia, my life so it's how I cope with life.
As a nurse, I also like helping other people. And I just feel like it's really important. I'm involved in a project to try to make all leisure centres dementia-friendly. I'm also taking part in lots of conferences. Sometimes it's just for education. And people just ask me out of the blue usually. Oh can you just talk about your dementia? Oh I can.
So I just feel like if you could help other people in life that's what life's about. Isn't it? Helping others. Tell them, they can't give up. There's no point in giving up. Your life's the most important thing. People think it might be a death sentence when you get diagnosed. But it's not really. You just live your life the best way you can. I love my life. I wouldn't choose to have dementia, but then who does. Who chooses to have any condition, but sometimes when you have something you just have to learn to learn to live with it. It's part of you. We're still the same people as we were before our dementia as we are now. And I don't think about it. I just enjoy my life as I enjoy it because that's what life's about.