The Burden of Caring

A Valley journalist delves into the challenges faced by family caregivers.

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Monday, February 10, 2014
Sarah Prall photo

In her new book, The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love (Scribner), Northampton journalist Nell Lake chronicles the two years she spent observing the members of a caregivers’ support group at Cooley Dickinson Hospital.

It’s an elegantly written and thoughtful book that considers one of the biggest of the Big Questions we face as a society—how do we care for a ballooning aging population, with people living longer but with more health problems?—as well as the personal challenges of individuals who care for loved ones who are elderly or infirm. Lake, who began attending the meetings at the invitation of the group facilitator, a friend of a friend, spent countless hours with group members both inside and outside the support group, as well as with the parents and spouses they care for, and she recounts their daily struggles: shuttling their relatives to doctor’s appointments, providing hands-on, intimate care and navigating the often frustrating and baffling healthcare system while holding down jobs, running their own households, living their own lives.

The emotional toll of that work can, of course, be daunting. In their meetings and in their conversations with Lake, the support group members spoke about the physical, logistical and—as anyone who’s ever spent time on hold with an insurance provider can understand—bureaucratic burden of caregiving. They also shared, openly and movingly, their love for their charges, as well as their more difficult emotions: anger, frustration, ambivalence, resentment—and, almost always, guilt.

Strong-willed “Penny” (Lake uses pseudonyms for almost all her subjects) moved across the country to live with and care for her equally strong-willed mother, who suffers from dementia. (One out of three elderly people will die with some form of dementia, writes Lake, calling it “a central and frightening specter of old age because it slowly diminishes personhood itself and devastates the relationships that personhood enables.”) Daniel, in a twist on the usual scenario, is an octogenarian with his own health problems who is caring for his 25-year-younger wife, who is bipolar. In perhaps the most heartbreaking story, Lake writes about Liz, who finds herself caring for a husband who was verbally abusive for years and has become more so—dangerously so—now that he has dementia.

For participants, Lake told the Advocate, the group offered a “safe space for talking about your experiences and for being known. Because caregiving is often very lonely.” That, she added, may be one reason why the members were willing to welcome her and her reporter’s notebook into the group: “I’d like to think having a journalist listen and seek to understand was a similar experience: someone trying to understand, to know you and recognize you,” she said.

“I think a lot of them were motivated by a general sense of altruism, that sharing their experience might help others, not just caregivers but people who might want to understand what one of their family members were going through,” Lake continued. Indeed, when Lake described the purpose of her project to Penny, her subject summed it up as “sort of a support group in a book.”

Initially, Lake said, she envisioned writing a magazine article about the group. But as time passed and she came to know the members and their struggles more closely, the idea of writing a book—something she’d wanted to do for some time anyway—developed. Week by week, the group developed a level of intimacy that knitted together not only the members but Lake as well.

“Sitting in this kind of enclosed space, listening to people talk about these really acute challenges and in some cases quite serious dilemmas, was really moving and really compelling,” Lake said. “This is a real and nearly universal issue for us in America now. I could recognize that. And then [there’s] just the larger human theme, which so much of literature explores, of our basic vulnerability as human beings, and that was moving to me as well.”

As a journalist, Lake had to balance her deepening personal relationships with her subjects—“Over time I got close to people,” she said—with a necessary professional distance: “That was a constant sort of internal negotiation for me, no question. I was giving people help; I was giving people rides sometimes when they needed it. And listening in a way I think we all wish our friends would listen … and sometimes knowing the details better than anyone else in their lives.”

Sometimes, she said, one of her subjects would refer to her as a friend, and that would give her pause. “I do consider them friends now, but a particular sort of friend. I definitely tried to maintain very clear boundaries in terms of what they heard from me. I was still an observer, in the sense that I didn’t talk about my own life. I certainly didn’t give advice. I might reflect on their experience as a way of advancing the interview, but [there] was still this kind of basic principle of not affecting the story and giving them space to have their own experiences,” Lake said.

Her role within the support group, she added, was “simply witnessing. ‘Observing’ sounds a little too cold for what the experience was.”

Which is not to say that the work didn’t have a personal effect on Lake. “Sometimes I had to remind myself that the whole world is not about illness, death and dying,” she said with a laugh.

But writing the book also helped the 47-year-old Lake process her own thoughts about how she and her family will address issues of aging and caregiving. “I felt like it made me more clear-eyed about what people I love are likely to go through, what I’m likely to go through, and ways I might make that experience easier and even fulfilling,” she said.

Lake’s family has already grappled with some serious end-of-life issues: her grandmother committed suicide when faced with a possible cancer diagnosis. “It’s clear to me that, by committing suicide, my grandmother wanted to avoid being an invalid, dependent,” Lake writes in The Caregivers. Ending her own life, she adds, allowed her grandmother to sidestep “the fading of the light, declining vigor, the decay, the messiness of illness and dying.”

“Her suicide was one reaction to the prospect of decline, aging and decline,” Lake told the Advocate. “And I now have this other potential response to that, which is to embrace as much of everything that comes along as is possible.” As her own mother ages, for instance, she said, “I might be able to respond to her needs with less fear, more openness, more wisdom, and also work with my siblings in a less reactive way than I … would have beforehand.”•

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