Tea Leaves, The SAGE Center and LGBT eldercare in The Huffington Post

How Caring for My Mother Brought Me Into the LGBT Caretaker Club: A SAGE Experience

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When my mother became terminally ill, I went home to take care of her without a second thought. I worked as a freelancer at the time, so my work life was portable. As an only child I had no siblings to turn to (or to fight with or resent later). The fact that I am a lesbian was never an issue with my parents.

If anything, having to “come out” only made us closer. In my early 20s I was suddenly in a situation where my parents and I had to work through my declarations of being a lesbian and everything that meant in the early 1980s. I come from a background — working-class (no complaints) and British (stiff upper lip) — where we rarely expressed our feelings. In many ways my coming out as a lesbian was an extension of my mother’s feminist politics. (When I told them I had something to tell them, her guess was that I was either gay or pregnant.) My father did struggle temporarily with the fact that I am a lesbian, but after I came out to my parents, he told me for the first time that he loved me.

However, as a lesbian caretaker of my terminally ill and elderly mother, I became part of a trend that I came to consider after writing Tea Leaves: A Memoir of Mothers and Daughters, recently published by Bella Books.

“Out and Aging,” a 2006 report, found that 36 percent of LGBT boomers are caring for aging parents. One significant reason that a higher percentage of us care for aging parents than heterosexuals is that we are less likely to have children to care for. Even when we are partnered, we are often perceived as “not having families.” This was not the case with me — both of my parents loved and accepted my partner. My mother left a letter to be read after her death, entitled, “A letter to my unexpected daughter-in-law, Barbara.”

It could very well be that people in the LGBT community (which crosses the spectrum of ethnicity, culture, and class) inhabit the role of caregiver in a spiritual sense (much as gays, lesbians, and transgender people inhabited the role of the two-spirit or “berdache” in many Native-American cultures).

It is true that there is a youth culture in the LGBT community (reflected in the gay media and consumer culture), but at the same time we inhabit the role of the “outsider” in society and may perceive the wisdom of elders — both family members and our friends who have become family — as important.

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Tea Leaves and the Affordable Care Act in The Huffington Post and On The Issues Magazine

Health Reform, The Supreme Court And What I Learned From My Mother

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As the Affordable Care Act worked its way through the courts in the past three years, I began to reflect on how it might have affected my own life and that of my mother, who died of cancer in 1994. After much deliberation, the Supreme Court just ruled that the Act is constitutional.

Like most people, I, too, was confused about the Act but I knew that it would benefit me along with millions of others. People like me and my mother need a health care system we can believe in — something better than what was in place.

The medical system is mostly a profit-making structure that overlooks the most vulnerable sectors of our society — especially older women.

I was a witness to this when my mother was dying from fourth-stage cancer that had metastasized to her bones. She initially became aware of the cancer when she woke up with a crushing pain in her sternum. Her doctor at a health maintenance organization (HMO) diagnosed her with arthritis and suggested she take extra strength Tylenol. He refused to give a referral to a specialist.

It’s often said that women become invisible after the age of 45. We also become invisible to the medical system. Older women are more likely to have complicated medical issues and are more likely to be low-income, having spent fewer years in the workforce because of raising children and caretaking elderly parents.

The Patient Protection and Affordable Care Act has already been helping the elderly population. As of January 2011, Medicare has been providing no-cost screenings for cancer, diabetes and other chronic diseases. At the same time, the Affordable Care Act established a new Center for Medicare & Medicaid innovation that tests better ways of delivering care to patients.

These two provisions alone are evidence that the healthcare reform has begun to improve the medical system — both in terms of preventive treatment and in research. Medical treatment is likely to become less fragmented (and profit-driven) and more transparent. As a result, people will get better treatment and are less likely to fall through the cracks.

If ObamaCare had been in place in 1994, the year my mother died, it may have made a difference. However, my mother also needed the one thing that cannot be legislated: trust. Her experiences as a nurse, as a working-class person and as a woman taught her not to trust the medical system. In many ways, this distrust was generational. My grandmother, at the end of her life, had several heart attacks and was hospitalized in a nearby inner-city teaching hospital. When my mother went to visit, she found interns prepping her mother for a gynecological exam. She stopped them; my grandmother, who was 77 years old, died a few days later.

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