Showing 61 - 70 of 701 annotations tagged with the keyword "Illness and the Family"

Irene

Coulehan, Jack

Last Updated: Oct-06-2015
Annotated by:
Aull, Felice
Chen, Irene

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The author poetically describes the neurological deficits left by his patient’s third stroke. Her misshapen words are "small stones and loose particles of meaning "as he attempts to understand her. Her husband, however, states that "her gulps don’t make no sense," emphasizing his perception of the hopelessness of the situation.

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Complications

Coulehan, Jack

Last Updated: Oct-06-2015
Annotated by:
Aull, Felice
Chen, Irene

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

This poem describes the deterioration of a man after the death of his spouse, as he ends up drunk, penniless, and in jail. The physician is asked to certify the cause of his death. He decides that the complex social factors leading to his death can only be summarized as "complications".

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Tender Mercies

Brown, Rosellen

Last Updated: Oct-06-2015
Annotated by:
Aull, Felice

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This remarkable, absorbing novel is the story of a marriage and of catastrophe. Dan and Laura are a young couple from very different backgrounds who have two children. There is a terrible boating accident, caused by Dan's cavalier carelessness: Laura is severely injured and is rendered quadriplegic. The narrative skillfully weaves back and forth between Dan and Laura's earlier life, the nature of their relationship, and the present shocking realities of daily living; on-going unresolved guilt, anger, withdrawal and despair; and a gradual reconfiguration of the love and attraction that initially brought the pair together.The author pays unflinching attention to the details of physical incapacitation and how they must be dealt with, and the consequences for Dan as husband-caregiver as well as for Laura. At the same time we hear Laura's dream-like, poetic inner thoughts--a mind trapped in a useless body-- yet she seems to use her mind both as sense organ and limbs. "If Dan . . . ever touched me above my breasts where I edge towards feeling like ice thinning out . . . I would feel it everywhere. Memory is a muscle too if you work it."

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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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Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A bicycling, bee-keeping, British neurosurgeon approaching the end of his professional career recalls some distinctive patients, surgical triumphs as well as notable failures, difficult decisions, and mistakes. Nearly thirty years of a busy neurosurgical practice are distilled into a collection of linked stories throbbing with drama - both the flamboyant kind and the softly simmering type.

Most chapters are titled after a medical condition (exceptions are "Hubris" and "Melodrama"). Some of the headings are familiar - Trauma, Infarct, Aneurysm, Meningioma. Other chapter titles flaunt delicious medical terminology that mingles the mysterious and the poetic with nomenclature such as Angor animi, Neurotmesis, Photopsia, and Anaesthesia dolorosa.

Included are riveting accounts of both mundane and seemingly miraculous patient outcomes. One success story involves a pregnant woman losing her sight due to a brain tumor that compresses the optic nerves. Her vision is restored with an operation performed by the author. Her baby is born healthy too. But tales of failure and loss - malignant glioblastomas that are invulnerable to any treatment, operative calamities including bleeding of the brain, paralysis, and stroke - are tragically common. The author describes his humanitarian work in the Ukraine. He admits his aggravation with hospital bureaucracy and is frequently frustrated by England's National Health Service.

Sometimes the shoe falls on the other foot, and the doctor learns what it is to be a patient. He suffers a retinal detachment. He falls down some stairs and fractures his leg. His mother succumbs to metastatic breast cancer. His three month old son requires surgery for a benign brain tumor.

As his career winds down, the author grows increasingly philosophical. He acknowledges his diminishing professional detachment, his fading fear of failure, and his less-hardened self. He becomes a sort of vessel for patients to empty their misery into. He is cognizant of the painful privilege it is to be a doctor.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Atul Gawande’s Being Mortal is both ambitious and synthetic, qualities that well suit his difficult subject, death.  In Western culture, there are taboos against death because it fits neither into post-Enlightenment notions of progress and perfection nor into medical notions of control, even domination of human biology. A surgeon and an investigator, Gawande draws on his patients, his family, and travels to various hospitals and other caregiving places in order to confront death and see how approaches such as hospice and palliative care can improve our understanding, acceptance, and preparation for death.

Gawande has harsh words for contemporary medicine, the supposed caregiver for the dying and their families.  Relying heavily on technique and industrial models, it ignores the deep needs of the dying and provides, instead, versions of “warehoused oblivion” (p. 188), for example long, futile stays in ICUs.

As opposed to traditional societies like India, Westerners prize the independence of individuals, a status that is, of course, never permanent. In the chapter “Things Fall Apart,” Gawande describes how longer lives are now the norm but they include chronic illnesses and inevitable decline in vitality.  Our deaths are now routinely in hospitals, not at home, and often extended—sometimes brutally—by technical support and unwillingness of doctors and families to stop aggressive treatment.       
       
Also, sadly, there are fewer and fewer geriatricians at a time when there are more and more elderly.  A good geriatrician takes a long time with each patient, is not well paid, nor does s/he do income-generating procedures. Worse yet, some training programs are being discontinued.  

Gawande illustrates his ideas with case studies of patients and describes, from time to time in the book, the elderly journeys of his grandmother-in-law and his own father.  These passages make vivid the abstract ideas of the book. But it’s not just elderly patients who face death: health calamities can come to anyone, for example, a 34-year-old pregnant woman found to have a serious cancer. Various treatments are tried without success, but family and doctors act out “a modern tragedy replayed millions of times over” (p. 183) of a medically protracted death. Finally her mother calls a halt to treatment.
               
Family members often bear a heavy load in caring for a sick elder, but many nursing homes are often worse, designed for control, not support of the patients. 

The chapter “A Better Life” describes the first in a series of places that offer much improved settings for the elderly, with birds, animals, gardens, and, in general, richer lives that have a sense of purpose.  Gawande describes hospice care, palliative care, and advanced directives (including Do Not Resuscitate orders) as improvements needed to break the norms of “treat at all costs.” The old roles of Dr. Knows-Best and Dr. Informative need to give way to physicians and others who talk with patients and families about their values, their wishes for the last days, and their preparations for death. In short, aggressive treatment should no longer be the “default setting” for hospital care.     
        
The book ends with a dozen moving pages about the death of Gawande’s father. The “hard conversations” have clarified his wishes, and hospice care has provided “good enough” days.  Pain control has done well. Then, finally, “No more breaths came.” The family travels to India to spread his ashes on the Ganges. 

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Lament

Millay, Edna St. Vincent

Last Updated: Jun-11-2015
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Lament is a twenty-two line dirge in free verse with one rhyme, at the end of the poem, which is almost certainly intentional. The poem represents a mother’s terse lament over the death of the father of the two children whom she is addressing. More of a soliloquy than a dialogue, one receives the distinct impression that the children may not even be present as the mother announces matter-of-factly that their father is dead, that they must soldier on, and describes the manner in which she will distribute the coins and keys in his pocket to them. The final couplet succinctly sums up the poem’s sentiment:


Life must go on,
And the dead be forgotten;
Life must go on,
Though good men die;
Anne, eat your breakfast;
Dan, take your medicine;
Life must go on;
I forget just why.

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself.  Or of other care-giving families.

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Summary:

This anthology is a sequel to Pulse: The First Year (2010). Both anthologies are comprised of postings to the website “Pulse: voices from the heart of medicine,” an online publication that sends out short poems and prose pieces every Friday. As the website subtitle suggests, the topics are from the medical world, the writing is personal (not scientific), and the writers give voice to feelings and perceptions from their direct experience as care-givers, patients, or family members of patients. All the pieces are short (typically one to five pages), usually with a tight subject focus. For example, in "Touched," Karen Myers reports how massage has helped her muscular dystrophy. 

The postings in the second anthology originally appeared from April 2009 through December of 2010. Because the 87 pieces appear in the order they were published, they don’t have linear coherence. Therefore the editors of have thoughtfully provided four indices in the back of the book: by author, by title with summaries, by healthcare role, and by subject/theme.

Prose pieces vary widely in style and technique. The poems are almost all free verse, although some poets have used regular stanzas. “Depression Session,” (p. 157) is an 18-line poem by a physician about a difficult mental patient. Many of the pieces explore the intensity of medical subjects with impacts on doctor, patient, and/or family. Some of them show limits of medicine. “Pearls before swine” (p. 191) relates the experience of a third-year medical student in a rotation at the office of a racist and sexist physician. “Babel: the Voice of Medical Trauma” (p. 158) dramatically tells the story of a poorly handled birth at a hospital.  

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Summary:

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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