Thank you all for your welcome!
Although I am finding it hard to express how I feel right now and the situation is very much further down the line, I wrote this 3 years ago (in a blog). It was in response to an article I had read regarding treatment for Dementia. It was the first time I had put into words how I felt, and that I was grieving. I still am...
'Many of us have a member of our family or a friend that has been diagnosed with Dementia and experienced first hand what a completely devastating illness it is. My Mother was diagnosed five years ago with Vascular Dementia which has snowballed as the years have gone by.
I am immediately drawn to articles like this, initially with a hesitant and naïve hope that there has been a break through cure, available immediately, which would bring my Mum back to me. IAs it stands there is no treatment or cure. But I also look, more realistically, for effective prevention that could possibly be available in the not too distant future.
My Mother has no idea that she is ill. She doesn't know that she has forgotten every single cherished memory of her own life, memories of people that were very special and important to her but already gone, and even more tragically, those that are still here.
A couple of years after she was diagnosed I was trying to explain why she had to go for a Doctors appointment, always being honest with each other, I said they need to keep an eye on how your Dementia is progressing or words to that effect. Dementia, a word that had been bandied around by doctors and family in front of Mum on several occasions but never seemed to click. I wasn't expecting a sudden outburst. With a moment of clarity and a fierceness I have never witnessed in my Mum before, she swung round and with such steely certainty in her voice said " I don't have Dementia, there is nothing wrong with me, that is a terrible, terrible, illness, if I thought I had that I would commit suicide!".
I have never mentioned the word in front of her again.
I know for certain that if my Mother had ever had an inkling that one day she would forget who I was, this wonderful Mum who has been there for me every day of my life no matter what mess I managed to get myself into, anywhere. That she would not know her Grandsons she absolutely adored and adored her. That she would not be able to take in or understand their achievements that she would have been so proud of. Who see her now in a way that would break her heart. Not to be able to enjoy any aspect of her life that gave her pleasure. To feel, lost, alone, and frightened every time she wakes up not knowing who or where she is. Not to be able to hold a thought for more than a few seconds (she was great thinker). She would definitely not have wanted to carry on.
And knowing what I know about this illness now, neither would I.
Everyday I speak to her, and even though I have to remind her who I am, she never, with out fail, forgets to ask me if I am happy, if I need anything. And every single day I lie to her because she wouldn’t understand and for those few minutes she would worry. So I tell her everything is wonderful. But I am not happy, I got myself in a mess again, and at this ripe old age I need my Mum. But she’s not here. Not the strong, capable, resilient, funny, feisty Mum I knew, who could find a solution to any problem " There is always a way, you just have to work out what it is").
One particular saying my Mum drummed into me, that I have repeated to myself many times over since I was about 4 years old and had fallen into a duck pond was, 'If you get yourself in a mess, get yourself out of it.'
“Well, I’m trying Mum, but it’s so much harder without you”.
So I do have an inkling you see and it scares me. It is a vile, hateful, cruel disease, that robs a person of every precious and treasured detail of their lives. Slowly. And because it is slow you deny for as long as you can that they are leaving you. But every trait that defines who they are, wisps away gradually, like smoke from a smouldering fire in a gentle breeze, until the last frail traces finally evaporate.
For those who witness it first hand, it hurts, terribly. The pain doesn't evaporate, it doesn't smoulder and burn out, it builds. Slowly. And while she is still here in body, it lingers, there is no release. A cruel illness indeed.
A pain I never want my sons to have to endure.
And what hurts more than anything, more than anything at all, is I never got to say Good Bye to her, she has just slipped away.'
