@john1939.
@canary.Oh canary, how appropriate are your words and also those of John. My husband was 61 when he had a stroke, not too severe and a reasonably goodish physical recovery. But mentally affected, just mild memory problems to begin with. But little did I realise that the personality changes, initially also not too bad (but a shock at the time) were the very earliest signs of what was to come -vascular dementia.
It is difficult, from beginning to end, but as it progressed and as dementia took over our lives and became almost all consuming, those feelings you each describe were no longer uppermost. Because the 'now' of dementia was so demanding. Also everything associated with it that has to be dealt with. There was no time to dwell on all that had been lost. As you say, canary, " the 'our' gone.
I'm not expressing myself very well. But I do empathise. My husband was the most unselfish person but dementia can turn them into the opposite, which you each express so well. Totally consumed by self and totally lacking in thought for others. Mood swings, verbal abuse etc. All due to this horrible disease but it is very hard for carers.
When my husband went into a care home after over 10 years at home with me, there were numerous different scenarios. Also a positive as some of what he once was did come back - from time to time. He remained there for the last five years of his life. (died June last year). Some of our best times living with dementia were during that time. Not continuously, but those glimpses of the man he had been were precious and this did help me realise that it is the dementia and not the person being so difficult, so demanding, so changed.
The pressure of caring at home is enormous. You are still living together but a different life and we are only human. We feel resentment, anger and much more that has robbed both our lives. A lot of people on TP will identify and empathise.
I miss my husband terribly and it is the man he was I think about rather than the one he became. Even although the bad times still rear their ugly heads. But I will not allow dementia to destroy what was for most of our life together, our real life; the memories.
I am sorry, I have written too much and none of it will be of any help or comfort to you, John and canary. My heart went out to each of you as I read your posts, and remembered how it was... Not that those dreadful times with dementia can be totally eradicated from one's mind. The end part of a life shared for many years. But in a way I am still fighting dementia, refusing to allow it to also destroy memories of our time together before it caused such destruction.
Discovering TP 7 years ago saved my sanity and helped in many ways beyond words. Being with the only people who truly do know what dementia is, what it does... I hope you also can find some comfort here.
In my thoughts
Loo xx
