Thank-you, but then I need to rant again!
Sheila thank-you for your kind thoughts, I guess I'm angrier than I am sad these days, I was sad for about 3 years but now I am just furious! It sounds as if your experience with your mother, helps you to understand how I feel, I'm sorry that you had to go through that.
I probably come across as very harsh and brutal, and articles like this one although very caring and understanding, drive me crazy because I'm so tired of everyone dismissing this disease of Dad's as inevitable, sad but acceptable. Its SO not acceptable! The article doesn't actually say this, but the author has definetly been defeated by his experience.
I want to scream at people, saying how can you just shrug your shoulders at this, how can you pat me on the hand and say never mind dear at least he doesn't know what is happening to him, how can people have just given up on this man who was a fighter, who fought for other people's rights, and would never have given up on them?? (and I am not directing these complaints at anyone on here)
I want to put Dad's illness in their faces, I am not going to just let them forget him, I am going to be unpleasant. Because if I manage to just shock one person enough for them to add their voices to those calling for more research funding, then it has been worth it. My mother suggested some time ago that when Dad dies perhaps we will just have him cremated and conduct a small service in the town he now lives in, not the one he spent most of his life in. I put it to her however, that I'm sick of Dad being forgotten, that he should have a funeral in size befitting how important he was to the community, the people who knew him all his life should come to the service and pay their respects, not just read it in the paper, and he should have a grand coffin, to befit the grand man inside it. (this is no comment on people's personal funeral preferences, it just had always been traditional in my father's family to have 'coffin' funerals with pall bearers). I don't want my Dad to be turned to ashes so that the memory of him can just blow away in the wind. I am sick of this disease turning a once very solid, vibrant, real person into a hazy reminisce for most people. He is still here, he is still real, his soul has not yet left this Earth. He's not the one who's left us, everyone else has left him.
Mum said to me, 'But what if nobody comes to his funeral?', and I said I don't care if noone comes, I will hire people to carry his coffin out of the church if I have to, I will make people remember who he was, they will see the funeral procession in black walking so proudly from the church, and they can live with him on their consciences, if they don't have the decency to show their respects! (I do suspect that if given the chance people of his community will eagerly attend, they have just been scared of Dad the last fewyears, because they don't understand what has happened to his brain) Why is everyone continually trying to hide him away? Dignity, they say, shaking their heads at me, silly young girl just doesn't understand...Shrew dignity I say! This has come down to a life and death struggle, (not just Dad's because every battle he wins in this disease is a win for everyone, i.e. assisting in developing new medications), fighting death is not a gentleman's battle, its down and dirty. What is the point of dignity, if you sacrifice other's wellbeings to maintain it? We should be proud of being undignified and support and be proud of those that have to suffer indignity, if it means that they can fight the long fight. We should celebrate these heroes in faulty bodies! It shouldn't be embarassing to be incontinent, people should be embarassed instead by their inability to deal with a fact of life, even if it is diseased life that they make a person suffering such lack of control feel undignified.
Phew, what a rant! Please don't anyone tell me to let go of my anger, or tell me why it is unwise. Anger is working for me right now, anger is keeping my Dad looked after by me, anger is helping me fight for him.