Former First Lady Rosalynn Carter once said, “There are only four kinds of people in the world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
A new book will help us feel more prepared for this fact, and more compassionate with ourselves and family members as we face difficult decisions. I think it is one of the best books on caregiving that I have read, and certainly one of the most readable.
In the book “The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love” (Scribner, February 2014), journalist Nell Lake observes the members of a caregiver support group at her local hospital, following their stories as they unfold over two years. Lake is interested in writing a book about caregiving partly because her maternal grandmother, who was diagnosed with cancer in her late 70s, committed suicide rather than “lose control” of her life and be dependent on others. Lake’s own mother is still vital and independent, but Lake wants to learn more about caregiving so she can find ways to navigate her relationship with her mother if her mother needs care. Lake is also aware that, with more people living longer, providing quality, affordable long-term care and support for family caregivers is one of our greatest public health issues.
Led by a social worker, the support group reflects the surrounding community: white and mostly middle-class. (Lake acknowledges the inherent limitations of that fact.) As Lake observes the group, she becomes like a caregiver herself, visiting the group members in their homes and their loved one’s facilities, and sharing in some caregiving tasks. She comes to know the families like a friend, and the resulting stories are deeply moving, as engrossing as a well-wrought novel.
Caregivers are not Saints
Since 43 million Americans—18 percent of adults—care for family members over age 50, many of us will recognize ourselves in this book. There is the middle-aged daughter who works full-time but shares her home with her mother with early-stage dementia; the husband who cares for his wife with bipolar disorder and multiple physical ailments; the older woman who cares for her husband with Parkinson’s disease at home until he needs more help than she can provide and she moves him into a nursing home; the wife who struggles with losing the husband she knows to early-onset Alzheimer’s disease. This recognition gives us strength by showing us that we are not alone—especially that we are not saints. We all struggle with the “unpleasant” emotions of caregiving, such as guilt, anger, resentment, boredom, and impatience. We share frustrations with siblings who shirk their responsibilities, and facility staff who fail to communicate with us about important changes in our loved one’s health. (One daughter, for example, arrives at her mother’s nursing home to find that her mother has had a major stroke. No one called her.)
I could not put this book down. It’s devastating and heart-breaking, but hopeful; beautifully written but grounded in the details of everyday life. As a former caregiver (who attended a caregiver support group for eight years), I believe that “The Caregivers” fills a real need, and is unique among caregiver “lit.” Rarely will we read such an in-depth look at a broad cross-section of family caregivers—those who care for loved ones in their home, and those who care for and advocate for their loved ones in a facility, as well as caregivers for loved ones with a range of diagnoses. I think the book deserves a wide audience, including anyone who anticipates having to help a family member or friend in the future, or is thinking about how they would like to be cared for if they need long-term care (and 70% of us will need such care at some point in our lives).
Caregiver Support Groups can Offer Deep Friendship
Having just written a blog post about aging “in community” versus aging “in place,” I was struck by how “The Caregivers” illustrates a way in which family caregivers can come together to form their own “community.” By listening to and empathizing with each other’s “stories, complaints, and worries,” by laughing with each other, celebrating birthdays, and visiting each other outside the group in times of need, the group members offer each other one of the key elements of “community”—deep friendship.
I have two minor criticisms of the book, however. As Lake switches from talking about one support group member to another, I had trouble remembering who was who. It’s a fairly large cast of characters, and I could have used more reminders of who they were. Another minor criticism is Lake’s description of dementia. She says that “our selves are based on memory…A relationship exists because a person remembers who the other is, recognizes him.” This seems to imply that you cannot have a relationship with a person if they don’t know your name or remember why you were important to him. I disagree. As my mother’s dementia progressed, and it wasn’t clear if she remembered exactly who I was, I still felt I had a relationship with her—loving and in-the-moment. Our relationship changed, yet in some ways it deepened. As caregivers, we grieve the long, “slow loss” of the vital and competent person we remember, yet find ways to connect with and enjoy the person who remains.
An Inside Look at a Secret Club with Millions of Members
Caregiving can feel like a secret club—invisible to family members, friends and coworkers who have no idea what we do every day, the stresses we feel. “The Caregivers” offers an inside look at this club, and validates why communities should provide more taxpayer-funded caregiver support. For those of us who are already caring for a family member or friend, the book provides reassurance that our experiences and feelings are normal. For those who have not yet been “called,” it’s a book of great depth and spirit that will light the way ahead.
To learn more about “The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love,” visit Nell Lake’s website.
Have you had any experience with a caregiver support group? Did you find it helpful? And are there other books you would recommend that give readers a similar, in-depth look at the day-to-day life of family caregivers? Please share them here.