The caregiver and her friends

ABSTRACT

This article is a personal essay about the lesbian friendship networks called upon when a dyke has to take on caregiving responsibilities for her dying mother and, especially, her partner who develops dementia and dies. The primary areas of concern are how friendships form a community's ethical base, the navigation of overlapping friendship networks, the different ways women come through, and the role our institutions play in creating “friendliness.” Underpinning these concerns is the way that lesbians create informal groups to investigate, inform, and affirm difficult decisions.

KEYWORDS:

• Aging
• caregiving
• community
• dementia
• friendship
• friendship definition
• lesbian ethics
• right to die

Notes

* One of my closest friends, who had been my first lover 50 years ago, was with us the night Susan died—one of friendship's most remarkable gifts to me.

* There are other ways to understand community, which include drawing a circle around all of the folks in a specific category: lesbians, schoolteachers, bartenders, AA participants, writers, ex-convicts; or all people related by blood; or in a geographic area; or in a religion (across geographic borders); or the members of specific ethnic or racial groups. A friend cautioned me not to conflate community and friendship, but I am wondering whether that's possible, at least for me. My friends share some basic values, even if we don't agree on everything. They are not my entire community, but they are the center.

* During Susan's illness, several of my friends asked if I resented doing for her what she would never be able to reciprocate for me, or if I worried about who would be able to help me as I aged. While I resented, sometimes, the time, organization, and physical effort it took to make sure she had the best life possible, I always knew she would have done the same for me if our roles had been reversed. The longer her illness went on, the less I resented doing things she needed. And somewhere in there, I developed a trust, perhaps naively, that I would be okay if/when I become unable to care for myself. I have friends, and they have friends. And I have learned where to look for help.

^† No, of course not everyone was uprooted—and this was more true for lesbians before we gained wider social acceptance in some places.

* When I was helping my mother in the last two years of her life, I began to notice how being “butch,” at least the way I have experienced it, began to dovetail with taking on traditional “women's” work—caretaking. That was a kick in the head. And another idea I got to talk about with my friends.

* http://thelastvisit.com/resources/advance-directives/five-wishes-a-planning-tool/

^† But here's another, unhappier instance of friendship networks failing: a number of years ago, I was invited to speak at a university in the Midwest. One of the lesbians who invited me had a partner who used a wheelchair. The town didn't have many accessible spaces for lesbians to socialize in. Some of her friends were building a new addition to their home, and she believed that they would add a ramp so she and her lover could visit there. But her friends did not. Should she have asked or helped them plan it? Should they have been more aware? How should we create an ethics that envisions what others need and encourages us to be willing to provide it?

* Well, I did yell it at one of my closest friends when we were out walking. Also something friends do: listen and don't take it personally when you are completely stressed and ranting.

^† Now, I am struck (again) by how few names we have for the many different kinds of friendships we make. BFFs don't cut it. We have our closest friends, our next-to-closest friends, the friends we make young, the friendships that we forge later in life; ex-lover friends and friends we've worked with, both on our jobs or in organizing; friends from our birth families. We have friends for a specific time or purpose, friends of friends who become or don't become close to us, friends we lose for a host of reasons, friends who we see frequently, friends far away who come when we need them. Should we try to find a lesbian Linnaeus? Or is it better to have to describe each of our friendships every time, without shortcuts?

* My anarchist editor-friend suggested that I should name all of the friends who helped; that not naming them puts them in the anonymous category of all those women behind the scenes whose labor goes into every creation. I asked another friend about it and she suggested a gathering of all their names—their first names. So, here they are: Adria, Andrea, Alicia, Babs, Barbara, Beth, Carol, Casey, Catharine, Chivvis, Claire, Dalit, Debbie, Debra, Diane, Dolphin, Duca, Esther, Eva, Fan, Gale, Hadas, Hannah, Happy, Irena, Jeanne, Jennifer, Jenny, Jewelle, Joan, Jo Ann, Judith, Julie, Kay, Kimm, Laura, Lepa, Luan, Lucy Jane, Louise, Marcy, Marg, Maria, Margo, Max, Maxxx, Meridith, Michal, Micky, Molly, Nava, Nell, Pat, Peg, Pnina, Rahel, Red Bear, Rhea, Ruth, Sally, Sandy, Simi, SJ, Sheila, Susan, Teya, Toni, Tryna.

Additional information

Notes on contributors

Elana Dykewomon

Elana Dykewomon is the award-winning author of eight books foregrounding lesbian heroism, including the novels Beyond the Pale, Risk, and Riverfinger Women. Her most recent book, What Can I Ask—New & Selected Poems 1975–2014, was published as a Sapphic Classic by Sinister Wisdom/Midsummer Night's Press. Elana is a long-time social justice activist, editor, and teacher. She lives in Oakland, stirring up trouble whenever she can. See www.dykewomon.org for info on her writing classes, editing, and publications.