It will be 6 months since Joe died in a few days. Actually a couple of weeks. I seem to need to do an update here.
There was someone who commented on a post from the month or so after my husband died who took exception to the idea that anticipatory grief did not exist. Several of the books I read took it for granted that you don't start grieving until the person dies. It was obvious to me that she is dealing with caregiving for someone with dementia, or one of the other diseases where the care goes on for years or even decades. She sounds like she is in the middle of anticipatory grief.
I totally agree with her. I've been there myself. I was fully in mourning mode for at least a year to 15 months before Joe died. By the time it started there no longer was any interaction with him because he had lost the ability to interact in any way. But there was plenty of grief even before that.
You grieve the loss of the life you thought you were going to have. You grieve the loss of "the couple" thing, being part of a partnership. You grieve the loss of a social life, in my case it was an almost total loss since my actual contact with other human beings, and not just Internet friends, tended to be limited to the person at the cash register, or the person serving me a meal at the local diner. That went on for a week or two at a time, and repeated for a couple of years.
When the death finally comes, there is more grief, but there is also relief, and guilt that you are feeling relief. It doesn't matter how good a job you did in the caregiving, because with some diseases, and dementia is one of them, failure is the only possible outcome. In my case there was also numbness.
I had chosen life when my hands on caregiving days were over because my husband was placed in a nursing home when it was no longer safe for me to keep him at home. Because of how long he continued to live, he would have had to be placed because I would not have had the physical ability to take care of him once he was totally bedridden and could no longer get out of bed even to sit in a wheelchair.
I had chosen life, but it took me quite a while to move on that choice. I made small, tiny changes to my life, and slowly they have begun to show up as rather large changes.
I look back and I see how much better I am than I was even 6 months ago. I look back and I can't quite see when the mourning started, but I'm glad I chose to deal with the pain and the sadness and the grief when I did, because I seem to have come out of it almost completely.
Most of the time, these days, I'm happy. Life is full of interesting things to do, and interesting people to do them with.
Take care all.