Summary:

Jonathan Franzen tells the story of his father’s slow and inexorable decline from Alzheimer’s disease. His story is a familiar one, and one that millions of people can now tell: at first the initial odd behaviors and memory failures attributed to various causes other than dementia, then the diagnosis and medical interventions to stem the inevitable, and finally the inevitable. While Franzen also describes the toll his father’s dementia exacts on the immediate family—as well as some truths it uncovers about his parents’ marriage—he does not put a significant emphasis on family effects.  

Interwoven in Franzen’s recounting of his father’s plight are a few digressions on Alzheimer’s disease. In one he wonders, as many others have, about whether Alzheimer’s disease is more a medicalization of certain behaviors than the result of brain pathology, or otherwise just “ordinary mental illness being trendily misdiagnosed as Alzheimer’s.” (p. 19) In others, he briefly summarizes the well-known theory involving plaques and neurofibril tangles as a cause of Alzheimer’s, and thoughts on how memories form and work in the brain. In yet one other digression, Franzen reminds us that Alzheimer’s disease as originally described in 1906 was a rare type of dementia characterized by early onset in middle age and rapid progression. He further notes that it was not until the latter part of the 20th century when Alzheimer’s disease was tagged as the fifth leading cause of death and the disease of the century, and only through the efforts of a coalition comprising clinical scientists, politicians, and patient advocates. 

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Two individuals share a struggle that is grueling, depressing, and whose outcome is probably preordained. The Mother (divorced, constantly tired, and fearful of sickness) is "not a good choice for the parent of a chronic invalid" (p. 168). The Son (smallish, clever, and born with some kind of tumor) has previously had an organ transplant (most likely kidney).

Their trek through the realm of sickness unfurls in seven scenes - all hospital wards and finally Hospice. First, the Son is an adolescent in a pediatric ward where the Machine (presumably renal dialysis) prevents his death. There he spots a baby that he dubs a "Not-Dead." She has multiple birth defects due to a chromosomal abnormality and is kept alive by technology. He intuits that while not dead, the baby is not "properly alive" either. He muses about his own status. His mother is always bedside, propping up his spirits.

Next he is in the ICU and then transferred to a medical floor. He receives a blood transfusion after disconnecting the Machine in a likely suicide attempt. Sometime later, he is back in the pediatric ward after receiving an organ transplant. The Son gets admitted to the Cardio-Respiratory unit for a severe infection. In and out of hospitals, he enrolls in college but quits. After getting married, he joins a commune of survivors of medical illnesses known as "The Saved." This collective lives on a farm and members avoid any contact with family.

The Son's health further deteriorates. He is hospitalized in terminal condition. By this time, he has his own child, a 14-month-old boy named Jaybird. In the oncology ward, doctors diagnose three tumors in the Son's brain but he refuses any treatment (surgery, radiation, or chemotherapy). He is moved to Hospice. His absent Father comes to visit and comfort him. When the Son dies, it is the Mother who is alone with him. The Son's wife, Father, Jaybird, and members of The Saved commune are all asleep in the Day Room. Only after the Son dies are the names of the Mother and the Son revealed: Julia and Jonathon.

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A mother (termed Mother in the story) discovers a blood clot in her young son's diaper and wonders "so what is this thing, startling against the white diaper, like a tiny mouse heart packed in snow?" This discovery leads to a diagnosis of Wilms' tumor--a childhood malignancy of the kidney, and surgery to remove the diseased kidney.The parents are thrust into a new world--the world of pediatric oncology ("peed onk") and meet the Surgeon, the Oncologist, and the other anxious parents waiting in the Tiny Tim Lounge of the pediatric ward. Everyone is named by their relationship to the Mother or by their profession--Baby, Husband, Anesthesiologist.The reader is privy to the inner thoughts of the Mother--her anger, denial, protective instincts and dark ironic vision. The Mother is also a writer and advised to take notes of this odyssey in case they need money to pay the medical costs. She feels alien to the culture of the pediatric ward--only her artsy friends understand her hell. Notes one (Green Hair) "Everyone's so friendly here. Is there someone in this place who isn't doing all this airy, scripted optimism--or are people like that the only people here?"When the Mother is given the option of no post-operative chemotherapy for Baby, the Mother grabs the chance to leave the hospital, clutching Baby, and says "I never want to see any of these people again." The piece ends on the rhetorical and ironic question--where's the money for these notes, for the story?

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A pot of boiling water falls off the stove. A diaper-clad toddler screams. His mother cries hysterically. The little boy is standing barefoot in a puddle of steaming water on the kitchen floor. The father who was busy hanging a door rushes into the room and quickly assesses the situation. He places the child in the kitchen sink and runs cold water over the boy.The child's skin is scalded. The father swaddles him in a wet towel but the toddler shrieks as if he is still being burned. Suddenly both parents realize they haven't checked the diaper. It burns their hands when they take it off. The diaper is filled with hot water that has collected inside it. The parents wrap their son in gauze and handtowels. They take him to the emergency room where "the child had learned to leave himself and watch the whole rest unfold from a point overhead." (p. 116)

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Blow’s account of growing up in rural Louisiana, exposed to negligence, sexual molestation, violence, and loss focuses on a child’s strategies of survival first, and then on sexual confusion, social ambition, and discovery of the gifts that led him to his life as a writer for the New York Times.  A major theme in the memoir is his learning to claim his bisexuality after years of secrecy and shame.  That emergent fact about his identity, along with moving to New York after a life in the rural South required an unusual level of self-reflection and hard, costly choices that challenged norms at every level.  His account of learning to assume a leadership role in a college fraternity and deciding to finally leave it behind offers a particularly vivid example of what it takes to resist perpetuating rites of humiliation and conformity designed to curb individuation.     

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This fine collection of work by Audrey Shafer is subtitled "Poems by a Doctor/Mother." The book begins with a section containing poems of personal history and experience ("that I call home"), descends into the nether world of anesthesia ("not quite sleep"), and in the final section returns to the light with a new perspective on the texture and occurrences of ordinary life ("okay for re-entry").Among the more medically oriented poems, see especially "Spring," "Anesthesia," "Three Mothers," Monday Morning (see annotation in this database), "Gurney Tears," "Center Stage," and "Reading Leaves." "Don’t Start, Friend" takes up the topic of substance abuse among anesthesiologists (or physicians, in general).

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Since Joy Davidman is known to most readers as the woman C.S. Lewis married late in life and lost to cancer four years after that marriage, it is likely that many readers will pick up Joy Davidman’s letters out of fondness for her husband’s Narnia stories or popular theology.  They will quickly find that the letters chronicle a life of considerable interest in itself.  Davidman was an award-winning writer herself, a secular Jew and atheist who turned hopefully to communism and then wholeheartedly to Christianity in her later years, though remaining skeptical—and acerbic—about church people.  The fact that she remained friends with her first husband after their difficult marriage broke up resulted in many of the letters in the collection, which include material Lewis fans will be glad to see, though it offers little intimate information about their lives except that they were devoted to one another through her painful final years with breast cancer.  Her account of that last illness is often matter-of-fact; she writes as though it is one of the less interesting parts of her life, which was full of intellectual pursuits, including editing some of Lewis’s later works, and of practical concerns that included caring for her two boys with whom she emigrated to England from New York.  

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The elegant widow Hélène (Edith Scob) lives alone with her faithful housekeeper in the cherished family home – a rambling country property outside of Paris. For her seventieth birthday, all her children and grandchildren come for a brief visit. Emphasizing their perpetual absence, they give her a portable telephone the mechanics of which baffle her. “You must set it up for me, before you go.”Hélène takes aside her eldest, Frédéric (Charles Berling) to explain her wishes for the estate, pointing out the most valuable art objects and emphasizing that the family should not feel tied to the old and costly house. Frédéric doesn’t want to listen; she is too young, he claims. He loves the house and assures her that the family will keep it. Moments later, the families pile into cars and race off. With the new phone still unconnected, Hélène is alone again, smoking in the evening gloom. Six months later, they gather once more for Hélène’s funeral. Single and living in the United States, Adrienne (Juliette Binoche) is sulky and rootless. Jérémie (Jérémie Renier) is entrepreneurial and is planning to live in Asia. Neither want to keep the house, and both could use the money from its sale. Frédéric is shattered by their indifference to the family and its traditions, but he cannot afford to buy them out. His wife sympathizes and waits. He loses the negotiatons. Yet, being the eldest and the only sib in France, he is forced to preside over the sale and dismantling of the property he loves. 

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A seated, cross-legged, naked woman envelops the body of a child. The limp child, head tipped far back, is clutched to the figure we assume is the mother. Her features are mostly hidden by the child's body--except we see one closed eye and her nose nestled into his skin. Also visible are her expressive eyebrows, which silently communicate her explosive feelings. With her strong arms--especially a strong, thick hand--she draws the child toward her even more tightly.Her embrace is all-consuming. The mother's muscular leg forms the base of the monolithic shape that confronts the viewer. Most of the lines the artist uses to shape and shade the forms are aggressive, taut, and meaningful, contributing energy to the surface. As a bit of relief from the overall grief, Kollwitz drew the lines of the woman's hair tenderly, and delicately rendered the boy's features.Beate Bonus-Jeep, Kollwitz's close friend, described this etching memorably: "A mother, animal-like, naked, the light-colored corpse of her dead child between her thigh bones and arms, seeks with her eyes, with her lips, with her breath, to swallow back into herself the disappearing life that once belonged to her womb." (Prelinger, p. 42)

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Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.

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