Came across your post today.
My Dad came to live with us last September; he had dementia (later found out it was Alzheimers). The move was very difficult as we didn't realise how bad his condition was and we had no experience of dealing with this, let alone on a 24-7 basis, and with both of us also working full-time. We had been alone for 15 years and now had another adult with us; we were told, "Don't do it - your life will change forever". It was a duty as a daughter, we had no choice - in fact, we were choosing to do this. But we didn't realise how it would affect all of us.
I would have done anything for my Dad, he was my hero, always supported and loved me unconditionally. The six months with us before he died however, were extremely stressful and I think I also started the grieving process then, so perhaps my stress was also due to being unable to accept that I was losing this strong man who could always give me the best advise for dealing with life - now he couldn't even dress himself, let alone discuss the latest new headlines etc. And at times we lost our patience, I lost my temper, said things I shouldn't, shouted at him, then cried and told him how much I loved him, and he returned the sentiment and forgave me, sometimes I look back and think.. you could have done so much more for him, been more compassionate and thoughtful instead of practical etc. We had very little outside help, no other family assistance, just me and my husband. The Alzheimers was a bastard. It stole my Dad quickly.
Dad then had a UTI, several falls (unknown to us) and I decided, with the paramedics, it was best Dad go to hospital for a few days (in my mind, I needed that respite.. just a few days.. I was on high blood pressure meds due to the situation.. I was exhausted..) Dad was in hospital for 3 weeks in the end due to falling in hospital, deteriorating etc and passed away in Feb from pneumonia and Alzheimers.
My guilt is huge and I constantly reflect: Should we have agreed for him to go to hospital? Should we have ensured he came out quickly before he deteriorated? But we know that we did not have the capacity to care for him at home whilst he had a UTI which was making him fall. He again fell in hospital which meant he couldn't leave, then more tests, then a stomach bleed, more tests, all the time, his alzheimers getting worse. I saw him every day, helping him, feeding him. I did not see him when I got THAT call.. I arrived too late. I feel guilt over that but honestly, I didn't want my last memories of Dad to be watching him die.
When thoughts of these 6 months and the flashbacks as to why we did this, why we did that, why we said that.. I can honestly say, I will never be able to forgive myself. It wasn't Dad's fault - it was the Alzheimers . But I cry and cry, and it's futile. Nothing can change what was said, all I can do is ask for forgiveness, be an advocate for my Dad and this horrible disease. At the end of the day, we did what we could at the time to the best of our ability and knowledge. Of course, if I had that time over, knowing what I know now about Alzheimers, it would be a completely different story. But I loved my Dad dearly and he knew that. I just wish I could take back the hurt that I feel I caused, though Dad never remembered due to the Alzheimers, because the pain it causes me to think I may have caused my Dad, breaks my heart.
I have reached out for counselling but it's not been easy. I try to push away the guilt but now and again it creeps into my head. I let the tears fall as they are falling now, in a way to cleanse myself.
The only way to make guilt a positive thing is to try to forgive yourself and for me personally, to improve myself where I feel I have failings and/or be an advocate and help the lives of others - at least that's what I think.
So very sorry for your loss. Be kind to yourself. Guilt is a perfectly normal reaction/part of grieving. Time IS a great healer.