The Anthology Giving Voice to the Labor of Caregivers

Eleanor J. Bader: Do you have personal experience as a caregiver?

Elayne Clift: Yes. When I was seven years old, my mother had her first mental breakdown. My older sister was 12 and my brother was three.

As far as I’m concerned, my mom was a victim of the psychiatric establishment. She was in a less than satisfying marriage. She was also very smart, but had no place to put her creativity and intelligence, so she became depressed. In those days—the early 1950s—the treatments were powerful drugs like Lithium and Thorazine, and electroshock therapy. These treatments did not work for my mom and she was repeatedly hospitalized, often for long periods. She started out being treated in high-end hospitals and ended up in state care.

My dad, meanwhile, had severe asthma and a heart condition. He was also not very capable of lending emotional support.

By the time I was in middle school, my sister was in college and I was doing a large amount of caregiving: going grocery shopping, making meals, keeping an eye on my brother, and worrying about everything. Unfortunately, I know first-hand about the loneliness and fear that come with feeling responsible.

Later on, when I had children of my own, my role as a caretaker changed. My son, who is now 40, was first diagnosed as learning disabled but was eventually diagnosed as being on the high-functioning end of the autism spectrum. He lives on his own now but needed, and still needs, a lot of support and supervision.

All of these experiences sensitized me to the issue of caregiving.

EJB: What prompted you to put together an anthology about this issue?

EC: I have a group of women friends who live in different places along the East Coast, and we get together periodically. The last few times they met I wasn’t able to be with them, but I was told that the conversation turned to caring for ailing husbands and partners. These women are dealing with the emotional strain, financial pressures, physical exhaustion, and terror that go hand-in-hand with this type of work.

After one of the get-togethers, one woman in the group suggested that I write about caregiving, and since I had pulled anthologies together before—this is my fourth—it seemed like a good idea. I felt like an anthology of personal stories could offer something important not only to caregivers, but to society more generally. In addition, I know that caregivers need validation and support. It’s often the only thing that keeps them going, and I see Take Care as a way to provide this affirmation.

EJB: How did you go about collecting the essays and poems that you included?

EC: I advertised in Poets & Writers Magazine and online and received more than 30 submissions. I was surprised by how well written most of the pieces were. Early on, I worried that I’d have too many contributions that addressed caring for someone with dementia, but people wrote about a range of conditions. 

There are also other ways that the collection is diverse. Susan Leader wrote about the chevra kaddisha, the Jewish burial society as an “esoteric sisterhood.”  Weam Namou wrote about the honor of following the Chaldean Christian customs of her native Iraq despite immigrating to the U.S., and Susan Cushman wrote about visiting Urania, the frail 86-year-old woman who had mentored her after she decided to convert to the Greek Orthodox religion. 

This makes Take Care unique. There are many academic works about caretaking and lots of individual stories about Alzheimer’s disease, but I hope that this collection will fill a void and give readers a concrete idea about what it’s like to actually take care of someone. I also hope that by looking at the issues through the lens of gender, it will provide a glimpse into the many ways that women support one another.

EJB: All of the pieces in the book involve loving relationships between the person receiving care and the caretaker.  Did you get any writing from people who resented being a caregiver, or who bristled at the expectation that they’d do this work?

EC: Well, one essay does talk about not being cut out for caregiving and coming to grips with the fact that her daughter was better suited for the job, and another acknowledged that the family felt stretched so thin that they decided to place their mother in a nursing home. Ellen Meeropol’s essay, “Being My Dad’s Many Daughters,” reflects on a long-standing father-daughter political difference, which she continued to think about in the context of taking care of him.

Overall, though, I didn’t get submissions from people who came from dysfunctional families. Perhaps this was because they did not want to revisit the past, or didn’t want to feel bad about themselves.

EJB: Every study acknowledges that women do far more caregiving than men. Do you think this is simply because of sexist expectations?

EC: Research shows that men manage caretaking, writing checks, making appointments, driving to pick up necessary items, but they tend to avoid the nitty-gritty tasks like bathing, changing diapers, and feeding their loved ones. Many men seem uncomfortable caring for their parents or spouse but, I have to say, I see that changing.

My daughter is 43, and in her cohort men step up to do childcare, cooking, and some cleaning. This gives me hope that if we can survive the Trump years, the next generation will share caregiving tasks more readily.

EJB: The anthology focuses only on the personal aspects of caregiving. But is there a political dimension that you want to discuss?

EC: When I began this book project, I had no idea that Donald Trump would become president! Now that he is, there is a clear political dimension to health care issues, especially in terms of the massive cutbacks his administration is proposing, including enormous reductions to Medicaid. Access to quality long-term care also needs to be available and affordable. Caretaking is clearly a policy issue, not just a family issue. No matter one’s means, it’s a huge economic issue. Lastly, we should stop assuming that women can just take over when someone they love falls ill.

But the issue is even bigger. I’m in a blind rage over Trumpcare. If the Affordable Care Act is repealed the cost will literally be people’s lives. When I think about how close we’d come to having a real national health program like the rest of the developed world, I become furious. Caretaking is about health, but it’s also about human rights. The absence of ethical principles among the Republicans is so blatant. Where is their moral compass? Still, given the madness of Trump’s politics, I’m proud to have put Take Care out in the world, and I hope that it exposes a wide audience to the reality of caregiving. I know that the book is not comprehensive, but if it validates women caregivers and makes them feel less alone, it will have made a contribution.

EJB: What’s next?

EC: I’ll be doing readings from Take Care in my home state of Vermont, and I’m scheduled to read at Blue Stockings in New York City on July 17th as well as in other venues across the country.

The views and opinions expressed in this article are the author’s own and do not necessarily reflect those of Lilith Magazine. 

3 comments on “The Anthology Giving Voice to the Labor of Caregivers

  1. Catherine Cadieux on

    Elayne, congratulations on sensing the need for this beautifully named and diverse collection of personal stories about this somewhat hidden facet of real life,and doing the work of gathering them. It sounds like a book for a wide audience, thanks to your ability to find redemption in your and others’ personal experiences in these difficult and exhausting life transitions. More power to you!

  2. marilynrice on

    What a wonderful contribution to the stories that need to be shared and the discussions we need to have, especially in light of the repeal and maybe some day replace inadequate health care coverage with none at all!! Congratulations Elayne.

  3. nextstepincare on

    I look forward to reading this book. My anthology of fiction and poetry about family caregiving –Living in the Land of LImbo: (Vanderbilt U.Press,2014) includes women (and men) who have turned their caregiving experiences into art. They include Lorrie Moore, Mary Gordon, and Chana Bloch. I have written nonfiction about my own experiences as my late husband’s caregiver for 17 years, so I know both genres have strengths. Carol Levine

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