validation

What I've been gradually working through the last few weeks is that I need to learn a new way of validating myself. I am someone who has been able to validate myself by achievement, by what I can contribute to the public world (on a small scale). But caregiving is like housework--you wash the dishes and they just need washing again the next day, it doesn't accomplish something in the same way as writing a book. I'm sure there will be parts of my life in which I will still accomplish things, but to grow into the caregiving role that I am beginning to play, I need to give up depending on validating myself by achievement.

Some caregivers validate themselves by feeling that self-sacrifice is an honorable path, but I am too much of a feminist to want to go there. Instead, I'm wondering if I can learn to validate myself not by accomplishing something predictable and concrete, but by the fruits of my actions. In the religious circles I run in, people talk about how we can only know if we are doing God's will by the fruits of our actions. If unexpected good things grow out of what we do, then we are following God's path. It involves giving up trying to be in control, but looking for the good that can come out of difficult situations.

Composing a Life

Someone recommended to me Composing a Life, by Mary Catherine Bateson. Bateson writes about her experience and four friends, focusing on how women since feminism have come to invent their lives as they go along. The recommendation came because I was talking about what I anticipate for my life as a result of John's illness and I said "It isn't who I expected to be."

Bateson's book does have a chapter on caregiving, but she focuses mostly on a very broad notion of caregiving that we do in the workplace and all sorts of settings, not just in the home. She emphasizes interdependence, complementarity, and collaboration (my first reaction is that doesn't do me much good with John).

There is something freeing about Bateson's notions of how life is more creative if it doesn't follow a linear path. And I'm thinking about her idea that parenting is an analogy for much of what we learn in maturity: "the willingness to relinquish control gradually and welcome the transition to an unknown future."

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?

Feminism again

I posted a query about feminist theory of caregiving in the comments here. Scotlyn wrote a wonderful reply:

Pam, I can’t give you any ready answer with this, although I do understand what may lie ahead in relation to caring, having spent ten years helping to care for my husband’s uncle, who suffered from all of the worst manifestations of Alzheimer’s among other things. It is extremely difficult to bear sometimes. Not being recognised is par for the course, and it is hard enough, but Paddy, for example, came to fear things like taking a meal I had prepared in case I was trying to poison him…well, you can imagine.

What kept me going through the hard times, and also through the strange times when people kept saying “aren’t you good to him” (which I read as code for “I can’t imagine why you would even bother,”), was this. I spent much of my feminist youth arguing for independence for women (from our caring roles, among others). But as I grew older, had children, and acquired dependent relatives by other means, I have come to appreciate the value of “family,” small “f,” as opposed to Family, capital “F,” which is what homophobic, patriarchal defenders seek to protect.

In “families” - that is, the real life close-knit connections that people build for themselves within their closest circle - whether by choice, by birth, by adoption, by fostoring, or simply by close contact, each individual matters, not because they can contribute any material benefit, but because every person has a value and a place of their very own. Interdependence, rather than independence, defines how we operate within “families.”

To me, my role as a carer in a small-f “family” falls between two strong tendencies which powerful interests emphasise - but in opposite directions. The capital-F “Family,” that I learned in my Christian childhood was part of God’s plan, is a pre-determined set of rigid roles - “wife” “husband” “son” “daughter” - which lays out rules about who can participate (not lesbians or other homosexual folk), who is in charge (the father), and what the role consists in (wife=caring/nurturing).

On the other hand, the apparent liberation of being “independent,” is in some ways the capitalist trap, which says that people only have value as producers and consumers - if they are dependent on others they no longer have any value. That striving for independence can doom us to living each on our own island without being able to reach out to one another in care and/or in need.

But no one person can spend their life without needing - in childhood we need our parents or care-givers, and in age we will again (should we be so lucky to see it), and in between, some smaller proportion of us will always need some degree of care from others. And, as I see it, during the mid-adult years, those of us who are both strong and able do owe a duty of care to those within our reach who are in need - we owe it indirectly to those who have cared for us in the past, and those who will care for us in the future.

And, although it breaks my heart to say it, because I know for some avoiding this is for all practical purposes impossible, I do feel we relegate this duty of care to the state at our very great peril.

and then further:

Anyway, I have one more thought which relates back to the original quote that started this thread (learn to relevance:-)), as well, which is that, to me, the word “choice” also has some of those capitalist trap overtones. Capitalist market theory is about providing endless “choices,” from which ideally free agents can “choose,” but in real life we continually find ourselves in situations in which we really have little or no choice. And is the illusion of “choice” part of the illusion of “control?”

I know the situation you are struggling with is not of your choosing, nor of your husband’s choosing. It is what it is, and for no good or understandable reason.

It is important to remember that we are not necessarily diminished by recognising such limitations and still going on to live (and to love) as good and hard as we can within situations not of our choosing and beyone our control.

Just to live and to love, despite all, are sometimes in themselves the ultimate triumph.

I'm not sure I'm willing to give up seeing choice as central to feminism (partly because I think it a better center than self-realization, partly because my experience as a sexual abuse survivor makes it especially important to me to feel some control). I do believe that in addition to situations in which we have no choice, there are also meaningful choices and meaningless choices. Choosing between McDonalds and Burger King is a meaningless choice.

I am a part of a particular liberal Christian tradition that says if I look at my deepest desires, they will lead me to be the person God wants me to be. That and feminism lead me away from the traditional role of the self-sacrificing woman. Instead, I believe that to grow means being willing to chose to do things that are hard and painful. I think of those things as being for the good of the world. I will think more about Scotlyn's idea of small "f" family. Owing a duty indirectly to those who cared for me in the past is tricky for me because my mother abused me. I don't easily trust the idea of family as a refuge.

choices

I brought up feminism and caregiving with my bicycling partner this morning and she could relate because she is a stay-at-home mom. She asked me how I define feminism and I said feminism is about empowering women (somehow I didn't want to define it as about self-realization for women). She spoke of how her mother fought for feminism; my friend is of a younger generation and didn't have to fight. I said she had choices and she used them--that is what her mother fought for.

In effect I was defining feminism as women having choices. Then I realized that is what John sees as my different culture--my expecting and wanting to have choices instead of accepting what happens as just the way it is. Life hits us with plenty of situations where we don't have any choice, but we can work towards a society that maximizes the choices people have. Thinking about it that way gives me more courage to stand up for my perspective--it is a feminist principle that people should have choices, though it isn't always possible. I don't have a choice, but I'm entitled to feel anger about that.

Feminism and caregiving

Feminism saved me when I was young. I grew up with abuse from my mother and grandmother, and my reaction was not to want to be a woman. By the time I got to college, planning to major in astrophysics, my way of being was to be one of the guys. Feminism saved me from being totally male-identified--it gave me a way to accept being a woman without becoming my mother or grandmother.

As a teenager, I didn't expect that I would ever marry or have children. I married only in my early 30s, with the understanding that John and I would equally share household tasks and with a prenuptual agreement (which my lawyer now tells me will provide some protection for my assets if we need to get John onto Medicaid). So into order to find myself in this new challenge I want to think about whether there is a feminist approach to caregiving.

I did a little web searching on the topic. I may just have to track down a special issue of a journal on Fundamentals of Feminist Gerontology. The trouble is, the focus is likely to all be on daughters caring for mothers. I found one article that argues that too many studies focus on how women put their own health at risk while caregiving and asserts there should be more focus on the autonomy of older women rather than their role as caregivers. Not what I am looking for.

There is certainly need for a feminist call for change in the system to give caregivers more choices. I read a blog by a gerontological psychiatrist in England and government funding of long-term care makes a big difference. If Medicare covered long-term care for people with dementia I would be in a very different situation. Even leaving aside the issue of how to pay for it, in a rural area like the one I am in nursing home care for people with dementia is way behind best practices. I'm guessing I may end up keeping John at home because nearby facilities won't be able to handle the behavioral challenges constructively. Feminism tells us that we need social solutions to problems like caring for people with dementia, not just private solutions.

But there are other feminist issues besides having choices. Caregiving can be a way of asserting identity for minorities. For wives who are caregivers to their husbands, caregiving is an odd change in roles where we have increasing power over our husbands, want it or not. I feel that already when I go with John to a doctor's appointment and the doctor listens to me. To claim to know what is best for another person is a mix of power and burden. The issue of identity and the issue of power come together when I increasingly become the sole decisionmaker and choose to handle things my way. In a posting in an email group today, a woman wrote that she was going to ignore a doctor's advice on a particular issue because she knew more about her husband than the doctor did.

The interesting question would be what would we do if we had a choice of caregiving at home or a facility that followed the scientific best practices? Would we assert that local knowledge--our personal knowledge of what will work with our spouse--is better than standardized best practice? I think many people in the email group would. Is that because we are socialized to feel responsible for providing care? Or is it a rejection of rationalization and the scientific approach, instead claiming the value of our local knowledge and culture?

I don't know if any of this makes sense yet, but it feels like something that is important for me to explore.