Living in the Land of Limbo

Fiction and Poetry about Family Caregiving

Carol Levine

• Publisher: Vanderbilt University Press
• Year: 2014
• ISBN:
  9780826519719
• Topic: Medicine
• Subtopic: Caregiving

Living in the Land of Limbo is the first anthology of short stories and poems about family caregivers. These men and women find themselves in "limbo, " as they struggle to take care of a family member or friend in the uncertain world of chronic illness. The authors explore caregivers' experiences as they deal with family conflicts, the complexities of the health care system, and the impact of their choices on their lives and the lives of others. The book includes selections devoted to caregivers of aging parents; husbands and wives; ill children; and relatives, lovers, and friends. A final section is devoted to paid caregivers and their clients. Among the conditions that form the background of the selections are dementia, HIV/AIDS, mental illness, multiple sclerosis, and pediatric cancer.

Many of the authors are well-known poets and writers, but others have not been published in mainstream media. They represent a range of cultural backgrounds. Although their works approach caregiving in very different ways, the authors share a commitment to emotional truth, unvarnished by societal ideals of what caregivers should feel and do. These stories and poems paint profoundly moving and revealing portraits of family caregivers.

PART I

Children of Aging Parents

The typical family caregiver—as portrayed over and over in the media—is a forty-something woman taking care of a parent (or two) who has young or teenage children and a full-time job. Through it all she gives credit to her patient husband and says it is a blessing to take care of her beloved parent (or two). This scenario is, for many people, the way things are, ever were, and ever should be.

Certainly such situations exist. But this picture fails to capture the reality of many caregivers’ lives. With the aging of American society and advances in health care technology, more people with serious chronic illnesses, especially dementia, are living longer, increasing the extent and intensity of care and support needed. Caregiving takes place over years, not months, and family members’ chronic conditions require more and more medical interventions and a tote bag full of medications. The “sick room” of nineteenth and early twentieth century stories today looks more like a hospital room than a bedroom.

To take one example: Julia Stephen, Virginia Woolf’s mother, was a nurse. In 1883 she wrote a guide called “Notes from Sick Rooms.” Given the complexity of home care today, it is disconcerting to read Stephen’s extensive comments about the persistent problem of nothing less than crumbs in the bed. While crumbs in the bed may not rate high on the list of today’s caregivers’ worries, much of caregiving involves just that kind of mundane task, part of the range of high- and low-tech tasks that characterize caregiving today. Tedium is interrupted by crisis. And through it all, the caregiver does not know when one will give way to the other.

In addition to advancing ages, the population is also becoming more diverse. As a result of these and other societal changes, the picture of family caregiving today is more a mosaic than a single image. Caregivers today are almost as likely to be men as women (although women still carry the heaviest loads), they come from all ethnic groups, and they react differently to the responsibilities thrust upon them as parents age.

The stories in this section illustrate that diversity. In “Diem Perdidi” (I have lost the day), Julie Otsuka describes an aging parent’s deterioration into full-blown dementia. In a sly reference to the standard questions a doctor may ask an older patient, the story begins, “She remembers her name. She remembers the name of the president. She remembers the name of the president’s dog. . . .” But “She does not remember what she ate for dinner last night, or when she last took her medicine.” Nor does she remember the daughter/narrator’s name. This careful cataloging of what “she” does and does not remember is suffused with her memories of being a child interned with her Japanese-American family in World War II.

Rick Moody’s story “Whosoever: The Language of Mothers and Sons” is almost a Biblical incantation. This story is the first chapter of Moody’s 1996 novel “Purple America,” which takes place in suburban Connecticut. The son who returns home without realizing how disabled his mother has become gives her a bath. Standard caregiving task, but Moody turns it into a mystical experience. “Whosoever knows the folds and complexities of his own mother’s body, he shall never die.”

In the third story in this section, “The Third Dumpster,” by Gish Jen, two Chinese-American sons try to fix up an old house for their parents, who have rejected assisted living because of the Western food. They scoff, “Lamb chops! Salad!” “Their parents were Chinese, end of story, as Morehouse [one of the sons] liked to say.” These differences in opinion between parents and children about where to live or who should provide care are familiar to many caregivers.

Two of the poems in this section continue the imagery of water and bathing in Moody’s story. “Water” by Li-Young Lee has many images of water, but the poem is mainly about his father: “Water has invaded my father’s / heart, swollen, heavy, / twice as large. Bloated / liver. Bloated legs.” He gently washes his father’s feet, testing the water with his wrist. He knows that water will kill his father, even as water brought him freedom from torture in Indonesia to America. In “Lucky” by Tony Hoagland, again a son bathes his mother, now a “childish skeleton.” His act of devotion is also an act of revenge, against an “old enemy.” Hoagland has described this poem as being “American” in its “merciless candor.”¹

Two other poems are about sons and fathers. The spare language in David Mason’s poem “Fathers and Sons” conceals the emotion a son feels as he helps his father go to the toilet. “Yesterday” by W. S. Merwin is about the relationships between two fathers and sons—the friend he meets who describes a visit to his father, and the memories this conversation evokes about the poet’s own father. The friend’s distant relationship with his father is evoked simply yet powerfully.

Robert Pinsky’s “Ode to Meaning” is a dense and complicated poem with many classical allusions. Its link to caregiving is not immediately apparent. It is, as the title says, an ode, a hymn of praise. In it Pinsky refers to his mother’s fall on her head. He says, “For years afterward, she had various symptoms that made the household somewhat chaotic. Meaning became a prized rarity. . . .” The opposite of meaning, he says, “is not necessarily meaninglessness: it might be the arbitrary.”² The third stanza, where the words appear in alphabetical order, illustrates this.

Finally, this section ends with two poems about sons and mothers. James Dickey, in “Buckdancer’s Choice,” describes his mother in her invalid bed, warbling the thousand variations of a minstrel song. Both she and the classic buck-and-wing men are dying out. Raymond Carver conveys a son’s frustration with his mother’s failing memory and constant neediness in his poem “Where the Groceries Went.” On the phone he reminds her that she has plenty of food in the house. But she is “afraid of everything.” And while he feels he is trying to be a good son, she is bitter. She says, that if only he would help her, then he could go back to “whatever / it was that was so important / I had to take the trouble / to bring you into this world.”

NOTES

1. Brian Brodeur, “Tony Hoagland,” How a Poem Happens: Contemporary Poets Discuss the Making of Poems (blog), Nov. 5, 2009, howapoemhappens.blogspot.com/2009/11/tony-hoagland.html

2. Robert Pinsky, “Contributors’ Notes and Comments,” in The Best American Poetry 1998, ed. David Lehman and John Hollander (New York: Scribner, 1998), 317–318.

1

Diem Perdidi

Julie Otsuka

She remembers her name. She remembers the name of the president. She remembers the name of the president’s dog. She remembers what city she lives in. And on which street. And in which house. The one with the big olive tree where the road takes a turn. She remembers what year it is. She remembers the season. She remembers the day on which you were born. She remembers the daughter who was born before you—She had your father’s nose, that was the first thing I noticed about her—but she does not remember that daughter’s name. She remembers the name of the man she did not marry—Frank—and she keeps his letters in a drawer by her bed. She remembers that you once had a husband but she refuses to remember your ex-husband’s name. That man, she calls him.

She does not remember how she got the bruises on her arms or going for a walk with you earlier this morning. She does not remember bending over, during that walk, and plucking a flower from a neighbour’s front yard and slipping it into her hair. Maybe your father will kiss me now. She does not remember what she ate for dinner last night, or when she last took her medicine. She does not remember to drink enough water. She does not remember to comb her hair.

She remembers the rows of dried persimmons that once hung from the eaves of her mother’s house in Berkeley. They were the most beautiful shade of orange. She remembers that your father loves peaches. She remembers that every Sunday morning, at ten, he takes her for a drive down to the sea in the brown car. She remembers that every evening, right before the eight o’clock news, he sets out two fortune cookies on a paper plate and announces to her that they are having a party. She remembers that on Mondays he comes home from the college at four, and if he is even five minutes late she goes out to the gate and begins to wait for him. She remembers which bedroom is hers and which is his. She remembers that the bedroom that is now hers was once yours. She remembers that it wasn’t always like this.

She remembers the first line of the song, “How High the Moon.” She remembers the Pledge of Allegiance. She remembers her Social Security number. She remembers her best friend Jean’s telephone number even though Jean has been dead for six years. She remembers that Margaret is dead. She remembers that Betty is dead. She remembers that Grace has stopped calling. She remembers that her own mother died nine years ago, while spading the soil in her garden, and she misses her more and more every day. It doesn’t go away. She remembers the number assigned to her family by the government right after the start of the war. 13611. She remembers being sent away to the desert with her mother and brother during the fifth month of that war and taking her first ride on a train. She remembers the day they came home. September 9, 1945. She remembers the sound of the wind hissing through the sagebrush. She remembers the scorpions and red ants. She remembers the taste of dust.

Whenever you stop by to see her she remembers to give you a big hug, and you are always surprised at her strength. She remembers to give you a kiss every time you leave. She remembers to tell you, at the end of every phone call, that the FBI will check up on you again soon. She remembers to ask you if you would like her to iron your blouse for you before you go out on a date. She remembers to smooth down your skirt. Don’t give it all away. She remembers to brush aside a wayward strand of your hair. She does not remember eating lunch with you twenty minutes ago and suggests that you go out to Marie Callender’s for sandwiches and pie. She does not remember that she herself once used to make the most beautiful pies with perfectly fluted crusts. She does not remember how to iron your blouse for you or when she began to forget. Something’s changed. She does not remember what she is supposed to do next.

She remembers that the daughter who was born before you lived for half an hour and then died. She looked perfect from the outside. She remembers her mother telling her, more than once, Don’t you ever let anyone see you cry. She remembers giving you your first bath on your third day in the world. She remembers that you were a very fat baby. She remembers that your first word was No. She remembers picking apples in a field with Frank many years ago in the rain. It was the best day of my life. She remembers that the first time she met him she was so nervous she forgot her own address. She remembers wearing too much lipstick. She remembers not sleeping for days.

When you drive past Hesse Park, she remembers being asked to leave her exercise class by her teacher after being in that class for more than ten years. I shouldn’t have talked...

Table of contents

• Cover
• Title Page
• Copyright
• Dedication
• Contents
• Acknowledgments
• Introduction: Family Caregivers in Fiction and Poetry
• Part I. Children of Aging Parents
• Part II. Husbands and Wives
• Part III. Parents and Sick Children
• Part IV. Relatives, Lovers, and Friends
• Part V. Paid Caregivers
• Resources
• Contributors