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Monday, May 28, 2012


I belong to an email support group. When we started there were 16 caregivers and their sick spouses. All the spouses had some kind of dementia. A couple of people have left the group and a couple have joined us, but basically we are the same group and about the same number of people.

I think it has been about 2 1/2 years since it started. In that time 11 of the spouses have died, one just this past week, leaving 5 still alive. Only 5. If you can call it alive. One spouse is living at home with his wife, and a second in an ALF with his wife. The other three are in either ALF or nursing homes, two under the care of hospice.

Joe is one of the two.

All of the others interact with their families and the staff around them to some extent. Joe does not.

Each time one of the spouses die, the group huddles around the husband or wife, almost as if we were physically there. The last thing I did every night last week was to check email to see what was happening. The first thing in the morning too. That is pretty much how it has gone each time. 

Some of the spouses died rather quickly, one in her sleep with no warning. Some took as long as a week after the final crisis started. A couple actually took two weeks from when things got strange.

Each time I wonder when it will be Joe's turn.

At this point Joe is sicker than most of the others were just before the crisis happened, but he is not in crisis. It could happen any time, but it hasn't happened, and it could take as much as another couple of years. And I am in limbo. Stuck half way between my old life and my new life, not able to move on. Ready to move on in many ways, but pulled back almost constantly because the old life is not yet over.

I'm working my way through another grief book. I've had this book for a while. The last few times I started it I thought it was only for those who have already experienced the death of their loved ones, and that the death be a sudden one. I read further this morning and it doesn't require a sudden death, but the author does take it for granted that the person doing the reading is dealing with a physical death. There was one small bit in the beginning stories about someone having to grieve all over again when the death took a very long time to happen and lots of anticipatory grief had occurred already. I'm pretty sure that will be the truth for me, but there is no question that I've done a lot of work on rebuilding my life already as well. I'm hoping doing more grief work will help. And maybe the book will help me through it.

I'm sad some of the time these days. I actually cried this morning and I don't cry often. But I'm also happy and the next message is going to be about my new life because there is news there as well.

Take care all.

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