My second writing for the journal workshop, with prompts in red:
Which parts of caring for a loved one give you joy?
At present I don’t feel a whole lot either of joy or of love. At the time when John was diagnosed I was feeling dissatisfied with the relationship even though we have usually worked together well. I had grown and changed and he wasn’t willing to grow with me. I don’t know how much of that was already the disease. My other issue with love is that I always expected love between husband and wife to be some balance of meeting each other’s needs. I haven’t learned how to feel love for him when there isn’t reciprocal care, when he doesn’t respond to my needs. I did that kind of caregiving for my kids when they were small, of course, but I had John to take care of me. It wasn’t easy for me; I felt I was giving what I didn’t have. I depended on John to give me what I was giving my kids so I wouldn’t feel resentful that I was giving what no one had given me. He remembers a day when I was frustrated with our son as a fussy infant and got angry at John. He said “Don’t take it out on me,” and I said “Who else do I have to take it out on?” I don’t have a partner of that sort in this caregiving.
The parts of caregiving that are easiest for me are the planning parts. I’ve gotten our financial situation into shape, from his retirement to my investments to buying long-term care insurance on myself (too late to buy it on him). This week I started work on changing the beneficiary on my retirement accounts, just in case I die before him. I’m also working on probably moving in a little less than a year, planning renovation of another house we own to be handicapped accessible. (It is currently rented to students, so it needs a lot of renovation.) I’m also good at understanding medical information and dealing with doctors; I know John is doing better than he would be on his own because of my attention to getting him the right medical care.
Which parts do you resent?
I try to avoid getting into a place of doing something resentfully—that isn’t good for anyone involved. The place where I am struggling most with resentment these days is when I set something up for John and he doesn’t follow through. He went to an exercise class I found for him and said it was just what he needed, and more than a month later he hasn’t been back. He said he would mail a package so I put what needed to go in it and the address all together, and then over a week later he hadn’t gotten it done.
I’m learning to be better at figuring out what is easier to do myself and what I have the patience to let him do. But there are things I can’t do for him, particularly at this stage when he can still manage activities of daily living on his own. Maybe I should exercise with him, but what works for him isn’t what I want or need.
What do you miss about your old life and what do you love about your new life?
I miss the freedom to train (run, bike, and swim) 12 hours a week as I was doing a year ago. This year I’m averaging 6 or 7 hours a week. I miss time when I can make my own professional writing first priority. I miss having someone to divide tasks with. I miss being taken care of sometimes. I miss being middle-aged, not yet thinking about retirement. I miss all those expectations that life would go on the way it was going. I also miss my kids now that they have gone back to school.
My first reaction was that there wasn’t anything I love about my new life. But I love the support of my daughter and my therapist. I actually think I also love the sense that everything is important. My planning and my decisions matter. We can’t take life for granted so much any more.