Continue reading the LGBT Caregiving Blog Series Presented by ASA's LGBT Aging Issues Network (LAIN):
Two Relationships in One
Transcending Business as Usual
Complications of Transgender Caregiving
Caregiving in the LGBT Community
Share the Care for the LGBT Community
Seven Principles for Caregivers
Excerpted from Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela and Sheila Warnock (Simon and Schuster, 2004).
Principle 1: Sharing responsibility is the key to not burning out
Principle 2: It won’t work unless everyone gains something personally
Principle 3: know your limits and stick to them
Principle 4: There’s no one right way to do it
Principle 5: Anyone who wants to help should be encouraged
Principle 6: Trust the group; support each other
Principle 7: Keep your own life in good working order
Tompkins County, where I have lived for more than 40 years, is located 250 miles upstate from New York City. The city of Ithaca is a culturally rich, scenic, “enlightened” college town, home to Cornell University and Ithaca College. Although we have both city (no struggle) and county (big struggle) anti-discrimination ordinances, and a large LGBT population of permanent residents and students, the kind of “all-purpose” LGBT service organization present in many metropolitan areas does not exist.
LGBT students have college-initiated services and support groups, but those of us who are “aging” are dependent upon the same private and public institutions as the substantially larger heterosexual population: institutions that are often neither culturally competent nor interested in actively engaging with any of the “isms”—racism, sexism, homophobia, ableism, ageism. Outside the city this is, after all, a rural, predominantly white, conservative county, thus explaining the popular local bumper sticker: “Ithaca: ten square miles surrounded by reality.”
My close friend Candace was diagnosed with a slow-growing soft tissue cancer in 1998, a cancer that she was told, from diagnosis, would eventually kill her. In keeping with how she had lived her life before cancer, she sought to be fully alive as long as possible. And she was, until her death seven years later at age 62. She co-founded the Tompkins County Working Group on LGBT Aging, camped with her oxygen equipment in tow, cheered on her partner of 20-plus years as she swam in the annual hospice fundraising event. And it was all made possible, in part, during the last 18 months of her life, by the group of 30 who formed her “share the care” team.
Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill (Simon and Schuster, 2004, rev. ed.) by Cappy Capossela and Sheila Warnock is a book originally published in 1995, one year before Candace died. In her continuing desire to be present for her own living and dying, Candace read widely on the subject, came across Share the Care, and set the wheels in motion to form a group that would become part of her process. I was one of the women in this group.
If the goal was to be able to stay in one’s home as long as possible, and have nonmedical care— watering plants, dog walking, rides to and from medical appointments, grocery shopping, companionship—provided by a network of those who check in and hang out, this is what those of us in the share the care group gave Candace. Perhaps most importantly, our involvement allowed the people closest to Candace, her partner and grown children, to have more quality time with her.
Rather than the depressing but necessary undertaking I had anticipated, I found my “share the care” experience incredibly moving, instructive and energizing. Being one of Candace’s caretakers taught me how caring for someone who is seriously ill—in this case someone who was dying—could be an integral part of living, a bittersweet part, but one with deep, life-altering rewards. I also came to understand that if you are not solely responsible for someone’s care, you have the psychic room to become that much more emotionally involved. I knew that it wasn’t all on my shoulders.
Following Candace’s death, the Working Group Candace helped start undertook the development of a Share the Care for the LGBT Community project. Would it be possible, we asked, to put together a group of 30 people if the person needing help was 71 or 81, rather than 61, especially if the person didn’t have as wide a circle of friends and family as Candace had? Probably not, we realized, given the physical limitations of age and the decreasing number of those of us who would still be around.
What would it take? Beyond the core group of one’s family of birth or choice, friends, co-workers, religious or spiritual group members, could we turn to the larger LGBT community? Could we call upon people who are not actively involved in one’s life but are a “member of the tribe”? If there will be strangers in your home, wouldn’t it be better to have those strangers be comfortable with you being LGB or T? This is the caregiving support structure we are working to develop.
The Share the Care for the LGBT Community model is potentially adaptable in as many different settings as one has the imagination and organizational skills to implement. It is easier to use with people who are “out” rather than those whose lives have been private and closeted. Basic computer knowledge helps with setting up a group and communicating, although our 30-member Ithaca group coordinated everything by phone and loose-leaf notebook. There are now easy-to-use websites (www.caringbridge.org) that assist in sharing health and other vital information with as large an audience as the care receiver wants to reach. The idea is to build upon the individual’s needs and resources to make the experience the most meaningful for all.
Nancy K. Bereano is a member of both ASA’s LGBT Aging Issues Network (LAIN) Council and the Advisory Council of the National Resource Center on LGBT Aging. She is the founding editor and publisher of the award-winning feminist and lesbian press, Firebrand Books.
This article was brought you by the editorial board of ASA’s LGBT Aging Issues Network (LAIN).
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