Cohen, Marion Deutsche
|Genre||Memoir (165 pp.)|
|Keywords||Abandonment, Acculturation, Caregivers, Catastrophe, Children, Chronic Illness/Chronic Disease, Disability, Empathy, Family Relationships, Humor and Illness/Disability, Illness and the Family, Narrative as Method, Parenthood, Psycho-social Medicine, Rebellion, Sexuality, Suffering, Survival, Women's Health|
|Summary|| In Dirty Details, Marion Deutsche Cohen writes about the unrelenting labor entailed in caring for her husband Jeffrey at home as multiple sclerosis turns his symptoms from "mere inconveniences" (11) to extraordinary demands, which can disturb her sleep as frequently as twenty times a night. The premise of her unsparing narrative is that "we have got to spill the dirty details" (26) of such arrangements before the endurance-draining responsibilities of home care such as hers can be understood and redressed. In a culture that favors narratives of seemingly heroic individual effort, Cohen's brutally forthright descriptions of the effects of Jeff's needs on her life can be mistaken for a self-pitying complaint, rather than an urgent, revelatory, political call to action. Like her husband, a well-published physicist at the University of Pennsylvania when diagnosed with MS at age 36 in 1977, Cohen is an accomplished professional. With a PhD in mathematics, Cohen teaches college students as well as publishes poetry and prose. She and her husband also shared, with increasing asymmetry, the parenting of their four children. |
Cohen captures the wearying routine of her days in her narrative's echoing refrain, "nights, lifting, and toilet." The nights refer to Cohen's dangerously disrupted sleep. Her husband's respirator can sound every half hour or so, inciting her to worry "about the psychological effects of seldom being allowed to finish my dreams" (23). (When she asks if the machine can be fixed, she's told that it's supposed to behave that way. By implication, so is she, despite the toll on her well-being.) Yet she daily rallies the strength to lift her husband on and off the toilet, a feat, among others, that sometimes defied the powers of several hospital nurses working together. Toilet also means responding to Jeffrey's regular calls to her to drop what she's doing, run upstairs, and bring him a jar. The jar at least relieves her from lifting. She experiences only intermittent relief, however, from finding and keeping home health aides who are able to show up reliably and behave civilly during the few hours per day they can be funded. What results from these tests of human stamina, Cohen tells us, is not "ordinary stress" that some optimistically believe can be managed by taking stress reduction workshops, but rather "dire straits." "Calling dire straits stress," she corrects, "undermines well spouses and makes us feel alienated and confused about where we stand" (32).
It's that standing in the broadest sense of the word that Cohen's book most searingly addresses. While Dirty Details contains one woman's account of caring for a disabled husband at home, the book's wider purpose is to make the labor of family caregivers visible with all its strains, conflicts, messiness, failures, anger, and, at times, humor. As the straights become increasingly dire, though, Cohen writes about what happens to love as she moves from sustaining tenderness, candor, and their physical intimacy to diminishing her compassion for Jeff and saving herself: a "pure survival instinct" (87). After sixteen years in his family's care, Jeff at first reluctantly enters Inglis House, a residence that provides as much independence as possible for those who cannot live independently, where he continues to write and publish. Cohen's professional life, social life, and beloved parenting once again flourish. The story she is freed to write (illustrated with photographs by Anna Moon taken with Jeff's consent) lead readers away from her particular circumstances toward a comprehensive interrogation of social and medical systems that operate by leaving the most chronically ill and disabled citizens in their families' care by default. And leave the families in dire straits.
|Commentary|| Marion Cohen's memoir is both uncomfortable to read and necessary to read. Without having the experience of intensive at-home caregiving themselves, or even of participating in or observing such care in their patients' homes, physicians, nurses, and social workers can only thinly imagine the toll their discharge orders can take on families. Neither are medical professionals likely to picture what the care of their patients amounts to in the hands of exhausted, unsupported, often economically disadvantaged family members. As in the case of the Cohens, middle-class, even professional families become economically compromised. Also like the Cohens, many families must let at least some of the responsibilities of home care fall to their children, even those as young or younger than the Cohen's ten-year-old son. |
For myriad reasons, the circumstances of home care have grown in scale since Cohen published her book in 1996, although the remedies have scarcely changed. It has been estimated that in 2006 between 30 and 38 million adult caregivers were providing care to other adults at an average of 1,080 hours a year. The estimated value of their unpaid labor (averaged very conservatively at $9.63 per hour) amounted to $354 billion. That amount is equivalent to the entire Medicare budget ($342 billion in 2005), more than the total public and private spending for nursing home and home health care combined ($206.6 billion in 2005), and as much as the total sales of the world's largest companies (Wal-Mart $349 billion in 2006 and ExxonMobile $335 billion). Despite all that, the most politically visible action has been for respite care, a scant remedy in view of Cohen's story. (See http://assets.aarp.org/rgcenter/il/ib82_caregiving.pdf)
Marion Cohen's story further challenges the assumption found in some book reviews of caregivers' narratives and theories of the ethics of life writing that those needing care at home are the only vulnerable persons in their households. Cohen's book asks us, as does Eva Feder Kittay's theorizing about dependency relationships, to consider new ways of thinking about the ethics of responsibility, including the responsibility of all citizens toward those citizens who provide medical services at home to relatives, friends, and neighbors at no direct cost to the community. (See Love's Labor: Essays on Women, Equality, and Dependency. Routledge, 1999.) With a growing population of chronically ill and disabled citizens in the United States, we are all likely to give or receive extended care during the course of our lives.
Marion Deutsche Cohen has also written about this experience in a collection of poetry, Epsilon Country (see this database).
|Publisher||Temple University Press|
|Annotated by||Schilling, Carol|
|Date of Entry||10/12/08|