Hello all
It's nearly 5 years since I've posted on TP, since the awfulness of Lewy Body Dementia invaded our lives and I didn't know where to turn.
Things did get better, for me, if not my Dad. We found a good care home. Eventually Dad settled and stopped sitting by the door with coat on and his case packed ever day. The disease or the medication took away his personality and feistiness, but it made him easier, more smiley and amenable. I was grateful for that.
I distanced myself emotionally, it was my way of coping. I stepped down my visiting to one a week. " Does he know you?' Was the question people always asked. I had no idea. Sometimes I got a smile but so did the care assistants and wasn't that more about me wanting to be comforted by his recognising me than about him?
I thought I'd done my grieving.
He passed away 2 weeks ago. Immediately it felt that the dementia years had been lifted. He was back to being him and of course the memories people bring when someone has died are of the person as they were, tales of the lively and unique character. The funeral was nice, a celebration and he hadn't been forgotten by his friends, although few came to see him in the CH.
So I feel I lost him gradually through dementia perhaps a kinder way than suddenly or traumatically or someone staying lucid to the end. Is it easier to deal with that way?
One thing that did make me sad was that the care home staff were so much closer to him than I at the end . They understood his behaviours and attempts to communicate which I did not.
I wasn't there at the end. I thought I wanted to be but after a 16 hour vigil through the night listening to breathing patterns and my heart stopping thinking he'd gone at least 20 times I wasn't so sure! I'm sure he was completely out of it, but I still had this crazy thought that he would come back for a brief moment of lucidity and speak some last words of wisdom. Hardly likely when he hadn't spoken for 3 years was it? I suppose what I wanted was to know he understood what had happened to him and why I'd needed to " put him in a home" .
Thanks for reading. It's made me feel better for writing that all down. I'd love to hear from others in a similar place at the moment
Sass x
It's nearly 5 years since I've posted on TP, since the awfulness of Lewy Body Dementia invaded our lives and I didn't know where to turn.
Things did get better, for me, if not my Dad. We found a good care home. Eventually Dad settled and stopped sitting by the door with coat on and his case packed ever day. The disease or the medication took away his personality and feistiness, but it made him easier, more smiley and amenable. I was grateful for that.
I distanced myself emotionally, it was my way of coping. I stepped down my visiting to one a week. " Does he know you?' Was the question people always asked. I had no idea. Sometimes I got a smile but so did the care assistants and wasn't that more about me wanting to be comforted by his recognising me than about him?
I thought I'd done my grieving.
He passed away 2 weeks ago. Immediately it felt that the dementia years had been lifted. He was back to being him and of course the memories people bring when someone has died are of the person as they were, tales of the lively and unique character. The funeral was nice, a celebration and he hadn't been forgotten by his friends, although few came to see him in the CH.
So I feel I lost him gradually through dementia perhaps a kinder way than suddenly or traumatically or someone staying lucid to the end. Is it easier to deal with that way?
One thing that did make me sad was that the care home staff were so much closer to him than I at the end . They understood his behaviours and attempts to communicate which I did not.
I wasn't there at the end. I thought I wanted to be but after a 16 hour vigil through the night listening to breathing patterns and my heart stopping thinking he'd gone at least 20 times I wasn't so sure! I'm sure he was completely out of it, but I still had this crazy thought that he would come back for a brief moment of lucidity and speak some last words of wisdom. Hardly likely when he hadn't spoken for 3 years was it? I suppose what I wanted was to know he understood what had happened to him and why I'd needed to " put him in a home" .
Thanks for reading. It's made me feel better for writing that all down. I'd love to hear from others in a similar place at the moment
Sass x