How long……

It is hard to make such big decisions with so much uncertainty. I try to not be influenced by one individual story or anecdote. There are always outliers. There is plenty of information available about how long patients stay in each stage "on average". There have been enough people to travel this path that the statistics are meaningful. I try to look at things on average and keep a reasonable buffer for margin of error. But yes, there is some scary information out there about how long some patients hang around in the end stages.

One thing I look at on this site, is for the people who are currently posting, when did they join? That gives me some insight into how long this could last.

My mom had dementia for at least 5 years. She was moving into stage 5 when her health started to decline and she went on oxygen. A few months after that, she went on hospice solely for extra help with her ADLs. No expectation of death. She passed 5 weeks later as she quit eating.
There’s simply no way for you to know how long your loved one will live or what other health problems will occur. I operated under this theory: I have to do what is best for them now. My parents needed assisted living. So that’s what they got. During Covid, they needed to move from a one bedroom apartment in the AL to a two-bedroom because the restrictions were a lot. They needed room to decompress from each other. So that is one they got, even though it was more expensive.

There was enough in her checking account upon her death that she could have lived at the private-pay AL for one more year.

I know everyone is different. I ask myself most days, how long before he passes. But I’m also watching him cognitively decline. He has been in MC since Sept 2024 and he has had major declines. The cognitive test they give him doesn’t hold a candle to what I see. He can’t name his children and he only tries when he isn’t talking pure gibberish. Yesterday, the home gave them a boiled crawfish outing. Obviously only about half the residents could perform the task of peeling them. In our southern culture we grew up peeling our own since we were about 2 or 3. He took the head off and threw out the tail and started eating the head. I don’t know what I was expecting, but it wasn’t that.
I have watched residents decline quickly as they get further along in the disease. One friend I meet, her DH was at my DH stage, 3 Years ago. He no longer says anything beyond gibberish, he is wheelchair bound and behaves like an infant. He is now on hospice and beginning to not be able to swallow. They’ve given him less than 6 months. I see a lot of declines in all of the MC residents. Who knows how long he will live? Only our higher power knows. This disease is horrible. Much love to you.