I haven't written here about personal struggles in a long time, but I have a feeling that this current one is going to be complicated enough that it will be useful to have a record and perhaps find people who want to talk about these issues. The challenge I face is letting go of some control, but control makes me feel safe. This is a challenge where I do want to learn to do it differently.
The immediate situation is that John has started on palliative care/hospice. From the beginning six years ago his disease has been one that has no cure, nothing but treatment for symptoms. But we settled into trying to maintain his quality of life. I researched the disease and made suggestions. Sometimes he refused, sometimes he resisted but then when he tried it told me I was right. In the last year his decline has been faster and he has also been much more resistant. When I asked the doctor about palliative care, I didn't expect that John would qualify for care funded by hospice, but he did. What hospice means to me is a transition from him living with the disease to dying of the disease, though I say that with the expectation that he has 6 months to a year to live. But I also realize that their job is to lead us through this process.
Today in church the sermon was about John 1:29-42 and the preacher noted that the first words Jesus says in John's gospel are "What are you looking for?" (John 1:38). The sermon called for us to listen deeply to the answer to that question inside us and trust the journey. I felt that fit with my thoughts about letting go of control. But where I got struck is that my first answer to what is my deepest yearning is “safety.” That comes from childhood experiences of abuse and my first father’s death in a car accident, which also makes me feel that God doesn’t protect us. So I had settled into an approach that the closest I can come to safety is trying to see what is coming down the road and figure out how to manage it as best as is possible. That kind of control has worked fairly well for me, so it is very hard to think about letting go of it even partially.
The letting go of control I imagine is letting go (though not completely) of my role as researcher and advocate. I initially pushed hospice to arrange for John to continue physical therapy, though it turns out that his physical therapist was already thinking it was time to give up. One motivation for pushing that was that it was important to John, but it was also a way of maintaining my role as the one who fights for what John needs. I realized I need to some extent to let Hospice be the ones who know what John needs. But then I have to face my own powerlessness instead of hiding it behind a front.
John is clearly continuing to decline--today he called me to put on his briefs for him, which he has been stubborn about doing himself. He leans on my arm heavily when we go out, but he does still get out. He doesn't seem like someone who is dying at this point, but he is increasingly vulnerable as his autonomic nervous system fails. And he has been clear all along that he would like to die of something else before his quality of life is gone.