Carole Levine has worked for over 20 years in the field of caregiving, most recently as the director of the Families and Health Care Project with the United Hospital Fund which “focuses on developing partnerships between health care professionals and family caregivers, especially during transitions in health care settings”. She is the editor of three books related to caregiving. The most recent, Living in the Land of Limbo: Fiction and Poetry about Family Caregiving, published in 2014 is unique.
There are thousands of books about caregiving – books that examine policy implications and caregiving as one piece of the growing health care system, books that offer tips and resources for caregivers, books that teach professionals about how to effectively work with caregivers, and memoirs describing the personal caregiving experiences of the authors. Living in Limbo is unique because it is an anthology of poetry and short fiction that touches on caregiving in a variety of ways. It’s a collection that Levine compiled, in part, while caring for her late husband who was severely injured in an automobile accident. During this time she found herself turning increasingly to poetry and short fiction and found it to be “a source of solace and a way to gain meaning from what sometimes seemed bereft of meaning”.
The pieces gathered here are grouped into five sections around the relation of the caregiver and the care recipient: children of aging parents; husbands and wives; parents and sick children; relatives, lovers, and friends; and paid caregivers. The common thread throughout the book is the portrayal of these relationships in all their complexity and messiness. And, as the title of the book implies, all of the pieces convey a sense of being in limbo, “a state of uncertainty, a feeling of being trapped, waiting for events beyond one’s control to unfold”.
At some level, we can all understand the difficulties of caregiving. Intellectually, even somewhat emotionally, I understand the exhaustion, the emotional ups and downs, the sacrifices that caregiving can require. At a deeper level, however, facts, figures, and discussions of the resources caregivers need only give a surface understanding. The fictional portrayals in this book, undoubtedly based on real experiences in many if not all cases, provide a more visceral sense of the caregiving experience.
Two of my favorites are “Diem Perdidi” by Julie Otsuka and “Whosoever: The Language of Mothers and Sons” by Rick Moody. They are both stories that read like the author’s stream-of-conscious experience. In “Diem Perdidi”, Otsuka depicts a mother’s fading memory. The title means “I have lost the day”, a phrase she remembers from high school Latin at the same time she can’t remember her daughter’s name. What “she remembers” is intermingled almost seamlessly with what “she does not remember” with an apparent randomness that illustrates the unpredictability of what will be remembered when. Memories of the distant past are confused with the present and short-term memories become less frequent. “She remembers less and less every day” until the by the end of the piece she no longer remembers the things she remembered at the beginning.
A similar style in “Whosoever: The Language of Mothers and Sons” gives a heartrending description of a son caring for his mother. The intimacy of bathing and dressing his mother is told with a bluntness that is almost brutal as is the way his emotions move quickly between anger, sadness, and love. The mother is unable to communicate, but in a shift to her point of view we see that her mind is clear. She knows what she wants to say but she can’t form the words and so “she sends no message but pathos.” Both her and her son’s sense of helplessness is palpable.
Both of these pieces are spare, but emotional, depictions of caring for an aging parent. Other pieces in this section also graphically touch on the intimacy of a child caring for a parent, the clashes that can occur between the needs and wants of children and parents, and culture differences between the generations in immigrant families.
The stories and poems in the section on husbands and wives explore the many different ways spouses respond to the changing roles and relationships brought on by illness and disability. Couples pull apart and move closer together, provide care out of obligation and out of devotion, and learn to interact in new ways.
One of my favorites in this section is “The Bear Came Over the Mountain” by Alice Munro. Fiona begins forgetting things. “’I don’t think it’s anything to worry about’, she said. ‘I expect I’m just losing my mind’”. Shortly after this statement her husband Grant is admitting her to Meadowlake where over time she enters into a relationship with another resident named Aubrey. She accepts her husband’s visits as something she must accommodate, but it’s not clear that she actually knows who he is. Grant copes with this as best he can. When Aubrey’s wife returns from vacation and takes him home, Fiona sinks into despair and stops eating. Throughout Grant is reflecting guiltily on his own past indiscretions. Ultimately, Fiona forgets Aubrey and she and Grant are able to move into a different phase of their relationship.
There is a bit of a soap opera feel to the plot in this story, but relationships like Fiona’s and Aubrey’s are not unheard of as the spouse suffering from dementia declines. In fact, a real life example is beautifully told as part of HBO’s documentary series The Memory Loss Tapes. Grant’s experience reveals some of the challenges of the caregiving spouse in this situation.
There are many other pieces in this collection that provide a window into the challenges and the joys of caregiving. If you are a caregiver, you may, like Carole Levine, find some solace in this volume. If you provide support to a caregiver, the pieces gathered here may help you better understand their experience.
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