Saturday, March 08, 2014
Dementia Diary 8th March 2014. Too many rock bottoms.
The trouble with reaching rock bottom is that at some point you have to find a way up.
Just how many rock bottoms can there be?
Tonight I hit one again.......and I sobbed uncontrollably in front of Bill. He was never good at dealing with such a situation.....and now, well, you can imagine that he didn't really know what was going on.
"Are you alright? Stop crying. I think I'll go to bed now."
Have I been in denial? Have I been pretending that, however not normal life is, that if I work really hard at it then our lives can have a semblence of normality?
I think I have tried too hard......it was always doomed to failure. I felt good that I was able to give so much attention to what might help Bill.
But did it help, really?
Today we have been out - again. I think it dawned on me that Bill didn't really know why we were out. Try lovely Spring weather and a walk on the beach, Bill. Except he didn't walk on the beach - and so that was the only part I really enjoyed.
I came home tired and sad.
Then the banging began. He hits himself hard until he feels some pain. He hits the furniture hard - and walls and doors. He tweaks my nose and pokes me frequently and calls out "Bee - bo" to me. There is no conversation.
I can see that he has many problems in his brain - nobody yet seems exactly sure which dementia is dominating all others. He has always been quite far along the autism spectrum and it is now much worse - probably. Is it that? I don't know.
So, after finally opening my mind to possibilities I started to think about how to climb from rock bottom.
My first thought was that I simply couldn't live with him any more. Let somebody else do it. One day I am sure that will have to happen.
He doesn't even exactly need day care yet. He can manage just fine on his own all day if I go out.
For now I think that I must ease off from trying to do too much.
If all he wants is to eat and sleep then I should allow that to happen. Bill sleeping is lovely - no noise.
I must get out on my own much more often - no thinking that it is my duty to stimulate and create an interesting life. What's the point? It is forgotten by bedtime.
I don't know how I can cope with the noise. If you are not with it 24 hours a day it is all too easy to think I should ignore it; that it is merely annoying and not dangerous. I stupidly tried bargaining with him.....I suggested I could take the banging if he could stop the forced horrid laugh. Of course I'll go on getting both.
I can't keep on going out for a walk when it gets on top of me......it is still there when I get back and very quickly I am back at rock bottom.
It is sad - the man I have supported for 50 years has gone and a sort of monster that I wish would go away has arrived in his place.
I yearn for peace and for the tension I constantly feel to go away.
I yearn for companionship and conversation.
Yes, sometimes I wish he wasn't living.
And there is nothing anybody can do.
Just how many rock bottoms can there be?
Tonight I hit one again.......and I sobbed uncontrollably in front of Bill. He was never good at dealing with such a situation.....and now, well, you can imagine that he didn't really know what was going on.
"Are you alright? Stop crying. I think I'll go to bed now."
Have I been in denial? Have I been pretending that, however not normal life is, that if I work really hard at it then our lives can have a semblence of normality?
I think I have tried too hard......it was always doomed to failure. I felt good that I was able to give so much attention to what might help Bill.
But did it help, really?
Today we have been out - again. I think it dawned on me that Bill didn't really know why we were out. Try lovely Spring weather and a walk on the beach, Bill. Except he didn't walk on the beach - and so that was the only part I really enjoyed.
I came home tired and sad.
Then the banging began. He hits himself hard until he feels some pain. He hits the furniture hard - and walls and doors. He tweaks my nose and pokes me frequently and calls out "Bee - bo" to me. There is no conversation.
I can see that he has many problems in his brain - nobody yet seems exactly sure which dementia is dominating all others. He has always been quite far along the autism spectrum and it is now much worse - probably. Is it that? I don't know.
So, after finally opening my mind to possibilities I started to think about how to climb from rock bottom.
My first thought was that I simply couldn't live with him any more. Let somebody else do it. One day I am sure that will have to happen.
He doesn't even exactly need day care yet. He can manage just fine on his own all day if I go out.
For now I think that I must ease off from trying to do too much.
If all he wants is to eat and sleep then I should allow that to happen. Bill sleeping is lovely - no noise.
I must get out on my own much more often - no thinking that it is my duty to stimulate and create an interesting life. What's the point? It is forgotten by bedtime.
I don't know how I can cope with the noise. If you are not with it 24 hours a day it is all too easy to think I should ignore it; that it is merely annoying and not dangerous. I stupidly tried bargaining with him.....I suggested I could take the banging if he could stop the forced horrid laugh. Of course I'll go on getting both.
I can't keep on going out for a walk when it gets on top of me......it is still there when I get back and very quickly I am back at rock bottom.
It is sad - the man I have supported for 50 years has gone and a sort of monster that I wish would go away has arrived in his place.
I yearn for peace and for the tension I constantly feel to go away.
I yearn for companionship and conversation.
Yes, sometimes I wish he wasn't living.
And there is nothing anybody can do.
