Wednesday, March 12, 2014


Dementia Diary March 12th 2014.

I have been discussing something with another carer on the dementia forum.
He reported that his Mum seemed to be most lucid when she went to bed and that his parents could have some sort of conversation at bed time.
Now, these days I don't go to bed at the same time as Bill.
But I get that effect in the morning, when we might sit together with a cup of tea in bed. I can't say that Bill gets to the point of lucid conversation, but he is calmer and the clapping and banging tends not to begin until he actually gets up.
I have half joked that our bed has become Bill's nest; a place where he feels secure and safe; maybe this is not far from the truth.
Bill always says that he doesn't know what all the fuss is about and that there is nothing wrong with him. But surely there are parts of his brain that know the truth? His sub conscious brain might be in turmoil, trying to make sense of the world he now finds himself in.
The turmoil itself is exhausting and he needs lots of sleep.......and the best place is the warm and cosy nest.
Maybe one day we should spend all day in bed together with me popping down to make drinks and simple food. It would be interesting to see if the quietness of morning could continue all day.
Today, once he finally stopped sleeping, the compulsive noise making was worse than yesterday for sure - with that seemingly uncontrollable hideous forced laugh.
We visited family members today for a short while - family with young children.
I warned him that it would not be appropriate to continue with the clapping and banging - but he just couldn't stop.
Seven year old, F, admitted to me that Bill's behaviour was a worry to him - I could see that in his eyes. I explained the illness very simply - no mention of course of the prognosis. Bill came back into the room and I explained that his behaviour was worrying F - "Don't be silly" he said, "Why should he be worried?" And then he went over as if to tickle F under the chin. F quickly turned away with a look of fear and disgust.
So sad. Made me want to sob.
But I sometimes feel like F was feeling. Amend that - I often feel like it.