Giving / caring for: caregiver?

I just went to my first support group meeting for caregivers of cancer patients. I was a nervous wreck. One by one, we drifted into the hospital meeting room, and made small talk to relieve some of the discomfort of being strangers. We negotiated seats at the table: not too close, not too far.  I took the corner position closest to the door, for easy escape. I noticed that there was a full-length keyboard tray under the table surface–aha: a computer table–and stopped myself from pulling it out. That would make me the center of attention, not keep me invisible. I wanted to observe, not participate.

The facilitator sent around name tags. Someone said, “let’s label ourselves,” and my mind was off to the races with a feminist theory-inspired critique. The analytical side of my brain is a great protector against emotion–during and since the meeting, it has been ruminating insistently.

There are so many labels to which I ascribe myself or inscribed on me, so many groups to which I belong: white, upper-middle class, woman, well-educated Obie, lesbian, parent, women’s soccer fan, environmentalist, etc. Through each of these lenses I view the world and the world views me. I am comfortable in all of my identities, whether or not other people accept them.

By being at that meeting, I was labeled “caregiver,” a double-whammy unhyphenated word. In this context, “care” means “take care of”: look after, provide for, protect. The OED fourth definition of the verb “to give,” is “to sacrifice, devote, dedicate.” When Susan is feeling poorly and can’t take care of herself, both the words “care” and “giver” are true. The element of selflessness, the lack of agency, bothers me. The permanence of caregiver as an identity scares me, particularly when the modifier is “of someone with cancer.”

After the nametagging and then words about confidentiality, we each introduced ourselves. It sounded like an Alcoholics Anonymous meeting.

“My name is Kim. This February, my partner was diagnosed with stage IV ovarian cancer, had all of her ‘girly bits’ taken out, and has finished chemo with a clean CT scan.”

There were medical terms and drug names I’ve never heard of. There were durations of giving care that simultaneously comforted me–people had lived–and depressed me: the people with cancer weren’t doing well; this is a deadly disease. And again, as with the word “giver,” there is selflessness. In a caregivers support group, we don’t introduce ourselves; we present our givee’s disease and what the cared for has been through.

My intellectual conclusion that a caregiver lacks permission to act mirrors frustrations several of the women expressed. Where is the line between the person with cancer’s ability or right to make decisions for him/herself and the caregiver’s, whose life is also affected? Of course there is no line, and the grays are like ever-shifting sands. We wish life could cut us a break. We wish that we wouldn’t have to be caregivers any more. And yet, it appears that once a caregiver, forever the experience of having been a caregiver, even if it’s been 15 years since one has given care. Whether I’m actively coaching or not, I will have always been and identify as being a soccer coach. Coaching and caregiving: purely in terms of being experiential labels, they are the same. In terms of the experiences themselves: not so much. Who wants to identify with such a negative experience? Not me. Where are the positives? Am I supposed to find a silver lining?

Did you notice that I said “the women” at the meeting? Is it usually only women who attend meetings of caregivers? Given the social rules that govern men, I would imagine it would feel uncomfortable, outside of a gay or other single-sex context, for men to walk into a meeting for caregivers. “Caregiver” at least for people over forty, sounds like a stereotypically female role. Maybe men have an easier time joining online forums. Or maybe my interpretation of this being a female/male dichotomy is incorrect. But I doubt it. [A month later: I’m happy to say: I was incorrect. The next meeting was 30% male!]

All of us sitting around the table were not only women but also white. I sat there, listening while making a paper airplane out of my napkin, thinking about race. Where do women and men of color go? Perhaps they go to groups hosted by churches. Perhaps they do come to meetings like this. Perhaps it comes down to people feeling comfortable, because without comfort, how does one go to a place where deep emotions will be bared? Unconsciously, I assumed the group would be female, white, and of a similar socio-economic status to my own. Certainly a person of color would think about this consciously, whether deciding that it did or didn’t matter in this context. The hospital environment itself may be racially “coded.” Undoubtedly a person without much money wouldn’t have time for the luxury of taking care of him/herself by going to a mid-day meeting.

Although I am financially comfortable and white, as a lesbian, there are situations in which I expect to feel different from most of the world. Assuming, albeit incorrectly, that everyone would be straight made it all the more difficult for me to make myself step through that meeting room door. My teenage self was  worried: I would be visible as being different. As an adult (more logically), I am very aware that my interpersonal interactions with my partner are quite dissimilar from traditional relationships between women and men, and therefore I face different issues as I give care to my partner. This is not to say that all women and all men are different from one another. But, there is a much greater likelihood, for example, that my partner won’t get angry at me for asking the doctor questions on _our_ behalf. It is probably easier for both of us to see this disease as affecting our entire family and therefore important to talk about it openly.

I’m done ruminating for now; for better or worse: I am a caregiver. If the label sticks, wear it.

Postscript: I did wipe aside my analytical haze quite often during the meeting, enough to know that it is a good group for me.

CC BY-NC-ND 4.0 Giving / caring for: caregiver? by Kim Brookes is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. Permissions beyond the scope of this license may be available at Permission to Use.