The Waiting Room: Caregiving as a Liminal Space

I have had my nose in books since early childhood. Reading was the perfect way to make the world fall away and a remarkable way to have an infinite number of experiences. It was with eager anticipation that I read Living in the Land of Limbo, an anthology of poetry and fiction that offers masterfully written and profoundly moving portrayals of caregiving. Carol Levine, the editor, is director of the United Hospital Fund’s Families and Health Care Project, and has published a number of articles on family caregiving in peer-reviewed journals. This anthology took shape during her 17 years as a caregiver after a car accident left her husband Howard with quadriplegia and a traumatic brain injury. She found that reading fiction and poems about caregiving brought comfort and meaning while she lived in a liminal space with no sense of when, where, or how the caregiving journey would end. Levine defines the purpose of this book by contrasting it with more “practical handbooks:” “It is not intended to teach, train, or inspire. It offers no helpful tips about reaching out to others for help or navigating the health care system. It does not encourage policy makers to recognize and support family caregivers in tangible, not just theoretical ways. Such books have worthy goals, and I have contributed to many of them. This book is intended to enrich readers’ understanding of family caregiving, whether the reader is a family caregiver, health care or social service professional, relative, or friend. It does this by drawing on a largely untapped resource: the wisdom, wit, and artistry of the creative writers of the past half-century. Poets and writers of fiction have much to say about suffering, healing, grief, and the human condition—the essence of caregiving.” With an aging population, caregiving has become a normative experience for families—almost as universal as birth and death. Most families willingly take on the care of their loved ones needing chronic or terminal care. In 2012, more than 65.7 million family caregivers, about 29% of the U.S. adult population, provided care to loved ones who were ill, disabled, or elderly (National Alliance for Caregiving, 2012). The book is organized into sections that reflect the relationship of the caregiver to the care recipient: 1) caregivers of aging parents; 2) husbands and wives; 3) ill children; 4) relatives, lovers, and friends; and 5) paid caregivers. A variety of conditions are addressed, including dementia, mental illness, pediatric cancer, multiple sclerosis, and human immunodeficiency virus (HIV)/acquired immune deficiency syndrome (AIDS). The stories represent diverse ethnic and cultural backgrounds as well. Quite a few renowned poets and authors fill these pages, including: Alice Munro, W. S. Merwin, James Dickey, Robert Pinsky, Mary Gordon, Rosellen Brown, and C. K. Williams. One approach to reviewing this anthology is to share some of the selections and what they might offer to you. In one of my favorite poems in this anthology by Raymond Carver called, “Where the Groceries Went,” a mother calls her son on the phone for the second time that day to complain that she has nothing to eat. Frustrated with her failing memory and neediness, he reminds her that she has plenty of food in the house from a grocery trip that morning. In response, his mother says: “Honey, I’m afraid. I’m afraid of everything. Help me please. Then you can go back to whatever it was you were doing. Whatever it was that was so important I had to take the trouble To bring you into this world.” For me, the “Diem Perdidi” (I have lost the day) story in which Otsuka recounts in careful detail what her mother does and does not remember was very poignant, perhaps because of my father’s dementia, which was similar. The story begins, “She remembers her name. She remembers the president,” in a clever parody of a memory test, but “She does not remember what she ate for dinner last night, or when she last took her medicine.” The mother does not remember her daughter’s name, yet her memories of her internment as a child with her Japanese American family during World War II persist. In Ricky Moody’s story, “Whosoever: The Language of Mothers and Sons,” the role reversal of adult children caring for parents is familiar. However, Moody transforms the ordinary task of bathing with his invocation, “Whosoever knows the folds and complexitites of his own mother’s body, he shall never die.” We see the son being tender (i.e., wiping “stalactites of drool from her mouth”) as well as feeling spiteful (“fed up with comforting and self-sacrifice”) in providing care. Particularly powerful is the shift in perspective in this story to his mother, who is cognitively intact but has a neurological disease that makes her unable to move or talk. Her suffering is apparent as she tells her son in a heart-wrenching whisper that “Your mother is in some marvelously big trouble. I am alone.” The struggles of an elderly husband trying to keep a promise to his wife that she would die in her own bed are the focus of “Mrs. Cassidy’s Last Year” by Mary Gordon. The wife is now demented, violent, and obscene: “so strong and so immobile.” The effort required to keep this promise has driven the husband to the point where he feels that he has “sinned against charity. He had wanted his wife dead.” This is not reading for the faint of heart and seems an inevitable conclusion in this caregiving crisis. In “People Like That Are the Only People Here,” Lori Moore describes a mother reflecting on her baby who has had cancer surgery: “How can it be described? How can any of it be described? The trip and the story of the trip are always two different things.” A son returns home to care for his demanding mother in “The Caregiver” by Eugenia Coller. This story highlights the toll of caregiving on the health of caregivers, the stigma of HIV/AIDS, and the complexities of family relationships which cause additional suffering. This anthology has several strengths. First, as with all art, the stories and poems distill the emotional truth to reveal an experience that is universal. The contemporary focus of this collection contributes to an immediacy in understanding; neither the contexts nor words pose a barrier as they might with older literature. Second, the stories raise important moral questions about spousal or filial piety. How much care should one provide? How long should one be expected to put his or her life on hold for another? What is the right response in the face of hopelessness or unrealistic hopes? Third, the characters we meet are simultaneously ordinary and yet extraordinary. They represent the essence of caregiving in their suffering, grief, ambivalence, loneliness, powerlessness, and recognition of the absurd. Finally, fiction has a long history of being a place where one can “say the unsayable,” and here we meet caregivers who behave in spiteful or angry ways that are described without shame or judgement. That may provide a bit of comfort and relief to caregivers feeling guilty over words or actions they regret. It is part and parcel of the human condition to have moments in which we wish we had “behaved a little better.” The weakest sections of this collection are those addressing paid caregivers—the literature addressing this perspective is scant. In addition, the stories about AIDS are somewhat dated by successes in treatment that no longer make it life-threatening. This book is an engrossing and insightful read that can be recommended to anyone wishing to enrich their understanding of the caregivers’ predicament—the worries, isolation uncertainty, and losses as well as the satisfactions. The brevity and completeness of the selections reduce the time commitment and are likely to stimulate reflections on and connections with one’s own experience. Selected readings can easily be incorporated to enhance a range of courses across disciplines, and particularly to address topics such as end-of-life care, caregiving, or the lived experience of aging. Overall, the knowledge and understanding one gains in reading these stories transcend “the verbal, linear, and measureable” aspects of aging (Kivnick and Pruchno, 2011, p. 143). These stories and poems are likely to change perceptions and perspectives, and stimulate lively dialogue on the disturbing as well as the affirming aspects of caregiving.

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