evening out

John looked up options and we ended up going out for dinner last night to a jazz club. We had a pleasant dinner, and I found things to talk about that actually concerned us. (His conversation topic of choice is to tell stories he heard on NPR.) At least until we were driving home, when I suggested that his concerns about our son might be a reflection of his own teen-aged experience. He didn't like that, but then he's never been willing to consider that there might be any unconscious influences operating in him.

Today I was in tears at church, feeling very depressed. I think one thing that has thrown me is that my mother's not-yet-diagnosed Alzheimer's has reached the point where she leans on me and my sisters. This has advantages--she can no longer remember things long enough to be critical. But it is a lonely feeling. I told someone who said I am the matriarch now (I'm the oldest). That's a scary thought.

John didn't notice I was low and wanted to spent time together. I had a bike ride planned with a friend and knew that would help my depression most. I did tell him that I feel like I have to take care of him, it isn't a partnership any more, and that he isn't supportive of me. He first tried to deny that I have to take care of him and to blame me for not telling him my feelings. I did come up with some examples he would accept. When he accepted that there is a problem with our relationship he said he wanted to work on it. I have trouble making much commitment to that idea because I don't have much hope.

I'm standing up to him more, trying to call him on how he isn't putting in the effort to make the best of his life as it is now. That may be unfair--he may not be capable of it. But he wants to be treated as a full participant and I'm not ready yet to fake that.

partnership

John and I met with the therapist and John said he feels I don't communicate with him. I said it hurts to ask him for input and not get it, so I tend to give up asking. We added a category to the list I started--things that are his responsibility (all but one are things that are about him only), things that are my responsibility (what I've put on the list is family responsibilities), and the new category is things that we do in partnership or share responsibility for. Cooking is on that list, not that we do it together but we take turns (week by week).

I asked John if he would share responsibility for Christmas and he said something that sounded to me like "if you tell me what to do." I said I would be glad to discuss issues, but I didn't count it as sharing responsibility if he waits for me to bring the subject up, decide what needed to be done, and tell him what to do. He said he would try.

I'm not sure any of this is going to work. But I think it is worth a try. In Families, Illness, and Disabillity, John S. Rolland writes that

Both partners need to realize that sustaining intimacy depends largely on establishing viable caregiving boundardies. Even the strongest relationships are strained by the ambiguities and discrepancies in shifts between two forms of relating: patient-caregiver and equal partners.

And that: "one of the key tasks of the chronic phase" is "maximizing autonomy for all family members given the constrains of the disorder." (pp. 245, 247)

reducing chaos

We had a roof leak that ruined the ceiling in our son's bedroom. The insurance company is paying for repairs--the problem was a defect in the roof their contractor put on when a tree fell on our roof five years ago. Our son's room is getting a new ceiling. I decided at the same time we should have the ceilings painted in the hall, our bedroom, and our bathroom, where there is some mold growing.

We don't have to clear the rooms--I asked the contractor and he said anything that is in the way of the workers they will box and moved out of the way. But I'm trying to clear off the stuff piled on my dresser and bedside table. I'm about 1/3 done. The work starts Wednesday but they probably won't start on our bedroom until Thursday.

John agrees that we should have the other ceilings painted and he says he intends to clear his piles of stuff out of the way. But he has hardly started. I am very thankful that it isn't our responsibility to get stuff out of the way--I can just let his stuff be his responsibility.

marriage and chronic illness

A post I read on the Wellspouses forum has me thinking. It was from several months ago but if you are in the group you can find it by searching for the subject "How do you define a healthy WS/IS marriage". I don't want to quote it because I haven't asked permission, but the general argument is that when a spouse is temporarily ill we relate to them by making a fuss over them, but that doesn't work for a long-term illness or disability. The author argues that in the situation of a long-term illness or disability the ill person should as much as possible take responsibility for figuring out how to manage their own care, just as they would if they were single. The key suggestion is to avoid taking responsibility for the other person, but instead let them take the consequences of their own decisions as much as they are still capable of making reasonable decisions. That makes me realize I've fallen big time into trying to rescue John (and then resenting that role). And he isn't to the point where that is necessary yet.