Put yourself in my shoes for a minute. You’re 58 years young, in full-time work and suddenly given a diagnosis of Young Onset Dementia. Imagine how you would feel. Imagine the impact on your family. Many people would think it was the end due to the stigma and ignorance around dementia.
But once I and my daughters got our head around the diagnosis, I wasn’t prepared to accept it was the end. The day before I was diagnosed, I was working full time in the NHS, the day after being diagnosed I was working full time in the NHS.
Nothing changes overnight, so why are we made to feel by so many that it’s the end?
People forget there’s a beginning, there’s a middle with so many adventures still to be had. I was determined to continue having adventures no matter what others thought.
Yes, it was a bummer of a diagnosis to get and one I wouldn’t wish on anyone. I soon realised that life wasn’t going to be quite as I imagined but also realised that this new life was all about adapting, adapting to the challenges that dementia throws at you and trying to keep one step ahead, outmanoeuvring and outwitting dementia at every stage.
No one gives you a handbook when you’re diagnosed. You’re often left abandoned and to flounder on your own.
I often talk about the advantages of living alone. May sound strange to some I know. But living alone means I don’t have to worry about others moving things around, because if somebody moves something, for me it no longer exists.
I don’t have to worry about frustrating others with asking the same questions over and over, as I can repeat stuff to myself all day long and not annoy me. Having said that, if you live with a partner, TALK. If you don’t talk, how can you understand and help each other through your fears and through your difficult times?
I’m not saying that it’s plain sailing because it quite clearly isn’t but if you look at a diagnosis as a new way of living, a life of adapting, it can make life much calmer and a little less stressful. I’ve learnt many coping mechanisms along the way – the 30-minute rule for when I see things that aren’t really there. Like the time I came downstairs, looked out of my kitchen window and saw my shed had gone and just the concrete base remained. I could have immediately dialled 999 and reported the crime but instead, I calmed my instincts down and waited 30 minutes – if it was still missing in 30 minutes I would know it was real, and of course, 30 minutes later it was sitting there happily in my garden.
There are so many other simple adaptions that can be made around the house to make life calmer and easier. Many are in my book. Yes, me, someone living with dementia has written a Sunday Times Best Seller with my book Somebody I Used to Know. After all, we all had talents before a diagnosis of dementia, we don’t suddenly lose all those talents overnight we simply have to adapt those talents and sometimes use them in different ways.
Don’t dwell on the losses and what you can’t do. Instead, focus on the things you CAN do and enjoy each day. If today is a bad day then maybe tomorrow will be better.
Author of Sunday Times Best Seller: Somebody I Used to Know - Published in the UK by Bloomsbury
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