I thought I might have written a blog like this before, but if I have I’ve not been able to find it…..it surprised me that I hadn’t as these thought are often with me…
I could have used ‘Progression’ in the title, being the positive person I am, but for me there’s nothing positive in the progression of dementia, hence the use of ‘deterioration’.
The thoughts that here I am typing away, speaking at events, while other are in a very different place and one I wouldn’t want to be. I often think it must annoy the hell out of some carers who are supporting people who bear no relation to me, yet we both have that diagnosis of dementia – it must seem so unfair….
I often feel worn me down with guilt – guilt that I’m surviving in the way I am – but it’s MY way of surviving. I also know I shouldn’t feel guilty, but that’s just me.
I may not have much of a short term memory but I do remember very high and very low emotional times distinctly. My first ever meeting at the Alzheimers society offices when a carer said to me….
“Yes but you don’t have real dementia”
……always rings loud and clear in my head. That ignorance of the fact that dementia isn’t just that which is experienced by those in the late stages.
A friend of mine has recently gone through a traumatic time and her lovely hubby suddenly deteriorated and turned violent – whether through dementia, medication, or feeling distressed and confused, who knows, but no one seemed to be listening and that’s the shocking thing…no one listening.
We’re probably the same age and the guilt I felt when I found out was so heavy. His family see me blogging and tweeting and it must seem so unfair.
But this shows crystal clear how every dementia is different …..how individuals experience and react in a different way…..how there is no handbook for how are brains are wired……
I’m often questioned and criticised on Twitter. When it’s by professionals, that hurts as they should know better, but I understand when it’s from people having a different experience. I can feel their hurt, their vision of unfairness of me ‘surviving’ while those closest to them are in a different place. I understand their anger, sadness and bitterness – it’s fine, I understand. I have much support on Twitter who look after me but I often wonder how much support they have 😔
In talks I say this:
“We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail 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 others can’t type but can speak better than me. If I didn’t have these words in front of me I’d be floundering.”
That seems to flash moments of understanding in some peoples eyes…..I can sense light bulb moments being switched on in their heads….
To survive I have to do what I need to do and I’m sorry if tweeting and blogging hurts some people, that was never my intention. But these things help me to survive this cruel disease. I know it helps many but I know it hurts too.
So many of us are criticised at the way we go about our life, but that way is our way. One day our cliff edge will arrive and those who criticise may then accept us……we will ‘fit’ the stereotypical image …but for now, I and I hope all my playmates, will ignore the cruel comments thrown at them.
As for those supporting those whose deterioration is quicker and more cruel, please accept my hug. My thoughts are with you as I would never want my daughters to be in your shoes and will do everything in my power to prevent it….