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Heroism At Home: An Intimate Look At Growing Ranks Of Caregivers

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If you’re an adult living in the U.S., it’s a good bet that you (or your neighbor or close friend or colleague) are caring for an elderly family member. Indeed, more than 43 million Americans — about 18 percent of adults — care for a family member or friend 50 or older, according to the Family Caregiver Alliance; 15 million of these caregivers tend someone who has Alzheimer’s disease or some form of dementia.

Currently, family (read: unpaid) caregivers are the largest source of long-term care in the U.S. and health scholars expect that by 2050 the demand for such care will nearly double — and that family caregivers will have to continue meeting the greatest part of that need.

But the statistics don’t reveal the intimacy of such caregiving relationships: the terror of a mind slipping away, the humiliation and messiness of chronic illness, the often violent and shocking ways that bodies unravel. In her new book “The Caregivers: A Support Group’s Stories of Slow Loss, Courage And Love,” journalist Nell Lake details her two years observing a caregivers support group that includes a 50-year-old botanist who moved in with her aging mother to care for her, and a survivor of Nazi Germany who devotedly tends to his ailing wife, and others in the group (some of whom are dealing with serious health problems of their own). While documenting their lives, Lake offers views into the complexities of caregiving: the profound stress, the upheaval of family roles, the slow, often excruciating grief, as well as the graceful humanity of it all.

Here, lightly edited, is my Q & A with Lake, who lives with her family in Northampton, Mass.

RZ: You begin your book on a personal note, with a memory of your grandmother. Can you tell us a bit about her and how her story moved you to write about the larger issue of caregiving in America?

Journalist and author Nell Lake (photo: Sarah Prall)

Journalist and author Nell Lake (Courtesy Sarah Prall)

NL: My grandmother was a poised woman who lived her life with great energy. She had raised three children, kept a beautiful home, was active physically and also politically—involved in environmental causes and in the nuclear freeze movement in her community. She prized her independence and physical vitality, and, as she aged, she expressed a fear of ending up frail and in a nursing home. She kept materials from the Hemlock Society in a kitchen drawer.

In the summer of 1984, when I was 18, she found out from a doctor that she might have cancer. That night, she went to her garage, sat in her car, and turned it on. A neighbor found her the next day.

While my grandmother’s suicide didn’t directly spur me to pursue a story about long-term care and family caregiving, once I was sitting in on the caregivers support group, it was clear to me that I was immersing myself in the stage of life, an experience, that my grandmother had feared and successfully avoided. It became especially moving, then, for me to follow others who were making their way through the “shadow part of life,” as I put it in the book.

My memories of her shaped my lens: I wondered, Can we find ways to embrace this part of life, to meet it with less fear? Can we also try to make it better for everyone?

How did you connect with the hospital caregiver support group?

In late 2009, I went to a dinner party, a birthday celebration for a friend. I ended up seated next to a man whom I call Ben in the book. He told me that he was the lead behavioral health counselor at our local hospital, and that he also facilitated a weekly support group there for family caregivers. I told him I was a journalist interested in healthcare and mental health issues. He suggested I might want to sit in on the group, and later he asked the group members’ permissions. Before long I was listening to their stories.

Is there any particular quality you discovered about these caregivers that you didn’t expect?

It may sound surprising, but spending two years with the support group gave me a new and better sense for what constitutes heroism. I saw heroism in Penny, who had taken her forgetful mother, Mary, into her home. Caring for Mary was not easy, but Penny met Mary’s needs as best she could, sought to provide her mother with as much comfort, care, and happiness as seemed possible. I saw heroism, too, in Daniel, a caregiver who was himself quite frail, and whose wife was bipolar and in pain. Daniel also bravely did his best to meet his wife’s needs.

Their heroism, to me, was a willingness to keep returning to difficult circumstances, to persevere and act compassionately, to try to ease others’ suffering.

This idea of heroism is similar to the notion that bravery is not the quality of being free from fear; rather, bravery is a willingness to act in spite of fear.

Some (many?) caregivers are reluctant to take on so much responsibility, but feel they have no choice. Is this true for most informal caregivers these days and how does our modern notion of caregiving differ from past generations?

In the most important sense, there was less choice a century ago. The word “caregiver” didn’t exist; the words “daughter” or “wife” or “sister” sufficed to describe a caregiving role. Continue reading