How have I changed over the last year?

This appears to be a question I’m been asked frequently lately. Some friends recently said – “you havn’t changed at all since last year – you look the same”. It’s only now I wish I’d asked ‘what should I look like – what did you expect to see’?.
Most of the changes are subtle changes that only I would ‘see’ and since it’s an ‘invisible disability’, very few would notice a change maybe for years.
I’m not sure what people expect my response to be when they ask this question. Obviously every individuals experience is unique to them. Some people do see a rapid deterioration. I’m convinced this is often due to ‘writing people off’ post diagnosis which must have an impact on the speed of some people’s deterioration.
I try to keep as busy as possible in order to keep my brain ticking over so only I would ‘see’ that I need more help travelling in the form of printing more instructions etc
Friends came over at the weekend and I cooked them a curry as I always have. But only I saw that I had to block off the exits to the kitchen with chairs to prevent me getting distracted and going out of the kitchen to do something else.
Others often don’t ‘see’ what coping mechanisms we have to continue ‘appearing to be normal’.
Only we may see the list we make to remember a process or remember to do the basic things in our lives.
George Rook who is also a wonderful person living with dementia in Shropshire and fellow blogger – recently wrote this comment”
” Who likes the idea of being with people but can’t quite cope with social occasions. Who wants to go out in the evening but can’t stay awake. Who needs routines and the familiar. Who can no longer be arsed with polite chit chat.”
This is how hard it really is – how much effort is entailed for someone to remain ‘normal’.

So the next time you ask someone ‘how have you changed’ – remember there’s far more to changes than those visible to all……….

 

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

3 thoughts on “How have I changed over the last year?

  1. Here, here! I’ve perfected the art of a forced cough, which gives me just a tiny space in which to find the right word or to remember what I am meant to be doing. I think I get away with it…

    Like

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