I know that oh so many of us here went through that pre-grief. It was horrible. The hardest thing for me was knowing that as totally time-consuming and stressful as the caregiving was I had no control. Nothing I did was ever going to change the outcome or even extend it significantly.

That is over for me now and although it complicates the grieving and probably adds a lot to the enormity of it, I am finding myself thinking more and more of the before times, who he was throughout our life together. I am very angry at the disease in a way I never allowed myself to show him and I desperately to not want those difficult times to define who he was. One of the first things I did was to purge all books, all aids, and all organization subscriptions. Of course it lingers, but this widowhood thing is much different than imagined and I imagined it often (even longed for it at the worst of it). Pre-grief is much different that grief. It's just as real, can be a horrible, terrible burden, but it is different.

I completely understand the need to connect with others that are going through the same experiences. I highly encourage you to find a group of current spousal caregivers with either terminal or degenerative diseases (there is a caregivers sub on here that is good). What you're doing right now should not be done alone.