drifting

I helped host a visiting speaker Monday and Tuesday and I've been going non-stop. Today was nonstop until about 7 pm, but after dealing with a contractor about a roof leak I did get in a hilly bike ride with a friend, and I feel much better.

John and I met with the therapist Monday and I brought up how John is drifting, which he acknowledged. I asked him about what he wanted to get done, and he said first of all work on the historical research project he wants to do. I asked him if he wants to make a commitment to more exercise, and he said no. He takes a half an hour walk most days, goes to physical therapy once a week, and occasionally does the exercises at home. I wish he would go to the Silver Sneakers exercise classes that work on strength and range of motion.

I pushed him that he should start organizing and writing out information on his family heirlooms, and he said "give me two years before I start." I said we can't count on him still being able to do it in two years. I want to get rid of stuff, while he feels it is his connection to his family. I'm happy to keep things for the kids, but it isn't going to mean anything to the kids unless he writes down the information.

I asked him what he would do differently if he only had six months to live. He couldn't think of anything.

communication without words

I attended a conference on environmental ethics this weekend. This morning I heard a talk on “Nature’s Voice and Human Flourishing: The Possibilities of Ecological Democracy” by Roger S. Gottlieb. Gottlieb wants to imagine a democracy that includes participation by non-human life, and so he spoke about how we can communicated with other living things even though we can't argue with them. He had a phrase I liked and thought I had written down, but I don't find it in my notes. It was something about how we communicate by aligning ourselves with the other. It struck me as an important seed for me, to think about communicating without words. Trying to imagine what it would be like to be John doesn't get me very far, because I would react so differently if I were in his situation. But I'm beginning to develop my sense of what he would want.

Update: I got a copy of the paper. The word is "attunement." He writes:

An “ecological” democracy would require that we learn to pay attention to what nature is saying to us: both by awareness of scientific knowledge and by a personal and collective process of attunement to plants, animals, and even ecosystems. By analogy this may not be totally unlike the attunement required for communicating with the severely handicapped, partnering with domesticated animals, or practicing truly sustainable agriculture. It may remind us of what political justice would look like between cultures so essentially different that they could not argue for their own interests in terms the other could understand.

book: Three Dog Life

I'm reading A Three Dog Life, by Abigail Thomas. Her husband suffered a traumatic brain injury, which left him unable to care for himself and psychotic. She writes about how her life changed and about her dogs. To me, her story seems a bit muted, with the dogs for light relief. I would have liked to hear more of the raw pain. But that is me; I suspect what she provides is all that most readers want to hear.

I do like her honesty about the process of learning what she can do and what she cannot manage, coming to terms with her husband staying in a facility. She says she couldn't bring her husband home: "I wouldn't be Rich's wife; I would be his jailor and my own. This was a sacrifice that made no sense; I couldn't do it." She says it took her years to be able "to say the words I want to live my life without feeling unnatural, selfish, cowardly."

What seems to have brought her peace was feeling that her husband would have more appropriate (specialized) care at the facility than at home. I wish I thought that was usually available when needed.

support

I found a new support organization, which I am very hopeful will help me feel less alone. It is called the Well Spouse Association. I've been wishing I could connect with other caregivers who are below retirement age and caring for spouses, not parents, and I think this organization is where I will find them. I'm even tempted to go to their conference in Chicago in October.

If anyone is interested in the journaling workshop I have been doing, there is a new group starting October 14. The cost is $100. The information:

What: Join us for a five-week journaling workshop conducted through e-mail. Relieve the stress of caregiving and share. We’ll only say what we love in the writing.

Where & When: Offered through group e-mails, starting October 14, 2008 & January 13, April 14, July 14, and October 13, 2009. E-mail Lgood67334@comcast.net for information.

Why: Caring for oneself is as essential as breathing, but caregivers lose site of that fact. Journaling is a caregiver’s oxygen mask.

Who: Instructor B. Lynn Goodwin is a veteran of six years of caregiving, a freelance writer and editor and a former college and high school teacher.

Contact: B. Lynn Goodwin, Lgood67334@comcast.net. Put “Journaling” in the subject box.

Curious? Want to see if this would work for you? If you have not been in one of my groups, cut and paste 15 to 1500 words of your journaling into the body of an e-mail and send it to me. I’ll tell you what I love and what stays with me.

managing life

There are a lot of complexities we have to deal with these days--what do people do when they can't manage? A friend was worrying about that, concerned about what she will do when her aging father can't help her with the things that she can't manage for herself after treatment for brain tumors and lung cancer. The latest is a large erroneous charge on her cell phone bill.

John said his 96 year old aunt isn't going to work on adding me as a backup for her power of attorney right away because she is struggling with her quarterly taxes. What happens when she can't manage her taxes any more? John and I pay someone to do our taxes, but there is a lot of work that has to be done to ready the material for the tax preparer. I'm getting close to taking over the last of the billpaying from John, because it bothers me he hasn't gotten doctors bills paid. I can handle his and my financial life, but I can't imagine dealing with his aunt's as well. He certainly can't manage hers. My mother has a secretary who comes once a week to deal with bills and accounts, but not many people hire someone.

The one I care for

Another writing for the journaling workshop, on the topic: "The one I care for."

John grew up in Houston, TX, where both his parents were schoolteachers. He had difficulty both with learning disabilities and with not fitting in with his peers, but his mother gave him a lot of support. His father died when he was in high school, his mother when he was in college. He has one brother but they became alienated from each other when John was in high school and his brother in college.

After college John joined the army because by signing up for three years he could choose to go to the language school instead of being drafted and sent to Vietnam. He studied Russian, hoping to later do Russian history, and that specialty got him a posting in the Washington DC area. When he had finished his time in the army he did first a masters degree and then a PhD in history (though not in Russian history because he had found the language so hard). He was in his mid thirties before he got his first full-time professional job.

That job was as a historian working on a contract for the National Aeronautics and Space Administration. John and I met when he read an article I had published and called me up for help in getting started in space history. We build a relationship long distance. When his three year job ended he moved to South Carolina where I had a permanent job and we married the next year. He had lived alone for 25 years before we married. He struggled for several years in temporary jobs before landing a permanent job at the local community college.

His professional ambitions didn’t come to much after an article that took him forever to write was rejected. But that made our life a little simpler, as I had a good job and it would have been hard for me to move for a better job for him. We had kids and our first child particularly had several problems that needed treatment and it was a struggle to manage everything. Two jobs, two kids, and a house was a bit more than we could handle, particularly during the period when a lot of my energy went into healing childhood wounds.

Looking back, I’m aware of the fights I didn’t win. I said I was not willing to have guns in the house, but he has a couple of nonworking guns that he inherited and they are in our attic. I said that was unacceptable to me, but he wouldn’t listen. I tried to get him to stop listening to books on tape while doing things with the kids, but he wouldn’t. I asked him earlier this year to start reducing the size of his wine collection (to buy less than he drinks or shares) and he refused. He would say I don’t give him credit for the things he did change, for example not having the TV or radio on when I am in the room.

John often made mistakes and sometimes he would get overstressed and not cope well, but he didn’t get really angry and he never once threatened to leave me. I got frustrated enough with his mistakes and inefficiency to push him to be evaluated for ADD, but then he wouldn’t take medication for it (except for sleep, which did help). I thought of it as a marriage that was balanced because we each put up with a lot—he put up with my healing journey and I put up with his forgetfulness and mistakes. Occasionally I could hardly bear it, as when he forgot repeatedly to take our son to his piano lesson. Thankfully he almost never forgot to pick the kids up from daycare or school.

John was interested in hearing about my inner journey, but he always said while he admired my ability to listen to what was inside me and to experience the world spiritually, he didn’t have that himself. When I was on a journey very specific to my childhood experiences that made sense, but in recent years I have tried unsuccessfully to push him to find his own way to grow. He always said he was content with himself; he didn’t feel any need to change.

It has made my life easier to have a husband who is never dissatisfied with anything. But oh I have wished he would try harder, hold himself to a higher standard. I wish he would try harder to fight his illness (for example by making exercise a higher priority). But he doesn’t fight me, and I should be grateful for that.

car shopping

We bought John a new car today, a Scion XD hatchback. It sits up a little higher than a sedan and the seat is more upright. For the first time since 1985 we don't have a minivan.

Toyota has a no haggle policy on Scions but I had printed out a blue book value for our trade in, which was considerably more than they wanted to give us. I made it clear to the salesman that we knew exactly what we were doing. John did the final insisting that we weren't going to compromise significantly on the price we wanted for our trade-in, and we got what we wanted.

Yesterday John made hotel reservations for our son's parents' weekend, only he made them for entirely the wrong weekend. But if I organize what he needs to do, he can still do things.

Meaning

Someone in a group I'm in wrote about struggling to find meaning in caregiving. That sparked me to write some thoughts of my own, which I've edited to take out my replies to her.

How to find meaning? In my own personal healing journey I've been able to find meaning by giving back to others. We can do that in all kinds of small ways. I'm so grateful simply when I run into someone who understands how bad it is—today a couple of colleagues who witnessed a form for me.

Can we find creativity in the ongoing situation? Again I'm thinking of my earlier healing journey, where I worked through painful memories and felt such satisfaction if I could find a creative way to get the feelings out. Is there anything that we can make beautiful? Is there a sense that finding ways to make the ill person's life as good as possible is a dance? Weaving a peaceful place around the pain and confusion.

Feminists have analyzed women's work as not valued because the same tasks have to be done over and over again. It isn't like building something—you sweep the floor and it just gets dirty again. Caregiving is full of such work. Someone has to hold the forces of chaos at bay. Celtic spirituality seeks to find the holy in the mundane, but that isn't easy to hold onto.

I recently read someone who wrote that from caregiving she learned to have faith in herself that she knew best, no matter what other people said or thought. But how can we be less lonely?