Showing 51 - 60 of 823 annotations tagged with the keyword "Caregivers"

Annotated by:
Donley, Carol

Primary Category: Literature / Fiction — Secondary Category: Visual Arts / Painting/Drawing

Genre: Graphic Memoir

Summary:

A nurse-poet well-known for her empathic descriptions of patients, Cortney Davis suddenly found herself in the hospital bed with a life-threatening condition.  Although she is a masterful writer, she could not find words to capture what she experienced as a patient.  Instead, she started painting her emotions—fear, suffering, and loneliness expressed through color, line, and tone.  The first of 12 paintings in this pathography shows her lying naked on a white slab, not literally what happened but expressive of how vulnerable and helpless she felt.  Each of the 12 paintings carries an emotional and spiritual truth—often raw and miserable.  Davis accompanies each painting with a brief commentary about how and when the painting was done, explaining, for instance, why some of the figures have no facial features. But the vivid paintings speak for themselves, and they add a different way of knowing not available through words.

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Annotated by:
Donley, Carol

Primary Category: Literature / Poetry — Secondary Category: Literature /

Genre: Poetry

Summary:

Bursting with Danger and Music  reveals Jack Coulehan’s  characteristic sensitivity to contradictions, tensions, and creative energy. The book is divided into six sections, thematically held together with such headings as “All Souls’ Day” and “Levitation.”  Many of the poems are first person narrations by patients,  physicians, and observers of the natural world.  Sometimes the patients are near death, as in “Darkness is Gathering Me” and “Slipping Away,” where they observe their own dying without fear but with wonder and even a sense of celebration:   “I’m pouring through the pores/ of this room, I’m already/ feeling the jazz and hormones begin” (p. 39). In “The Internship Sonnets,” he experiences the world of the medical intern, often scared and exhausted, who is caught between his subservient duty to the chief of medicine and his own violations of that duty, such as telling the truth to patients.  Where is his primary duty?  What ought he to do in these conflicting value systems?

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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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On Bittersweet Place

Wineberg, Ronna

Last Updated: Nov-18-2014
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom.  Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences. 

Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself.  While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses.  Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy. 

Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time.  In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance.   When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected.  In retrospect she is more adult, more mature than most young women might be in each of these situations.  She is a remarkable young woman with a spirited edge.

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Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Although Dr. Helman’s untimely death did not permit a final editing by this prodigious writer, the published edition is not a book-in-progress. An Amazing Murmur of the Heart: Feeling the Patient’s Beat represents a powerful and persistent continuation of observations and themes that grew out of medical education, close observations of physicians and patients, and his studies in anthropology. All of these forge an approach to patient care that is out of the ordinary.  

As his previous writings suggest, Helman is passionate about medicine but concerned, equally about the emergence of those who fail to listen and to those who might be called techno-doctors.  While professing his appreciation of and attraction to the magic machine or computer, he is mindful of its absence of emotion and ambiguity.  “For this post-human body is one that exists mainly in abstract, immaterial form.  It is a body that has become pure information.” (p. 11)

Chapters are comprised of stories about patients and their care providers, each representing complex facets that defy precise measurement, answers and conclusions.  As Helman steadily notes, the physician must be an archeologist:

Most patients present their doctors with only the broken shards of human life—the one labeled infection, disease, suffering and pain each of these shards is only a small part of a much larger picture….the doctor will have to try and reconstruct the rest. (p.66)

In general, the chapters illustrate first an initial review of medical history, and then specific patient stories.  Of the two, the story is most important.  “Mask of Skin,” for example, begins with an overview of skin from Vesalius to the present: largest organ, stripped bare by anatomists, penetrated by disease, later scanned and X-Rayed, tattooed, re-fitted by surgeons, etc.   That said, Helman the physician-anthropologist, moves from science to specific stories about patients whose skin may cover profound experiences, psychic and otherwise, that might be overlooked by a dermatologist.   Although skin is involved in each of that chapter’s stories, the willing physician must dig deeper in his observations and caring manner to make more profound discoveries.      

In a chapter entitle “Healing and Curing” the author describes an old friend, a practitioner who provides advice about patient care that ”was not included in his medical texts”.  Patients are more than a diagnosis dressed in clothes.  Doctors must make patients “feel seen, listened to, alive”.  Always patients should be regarded as people who happen to be sick.  From his admired colleague Helman learned to be an attentive listener  to the "tiny, trivial, almost invisible things" in patient encounters and stories. To truly heal as well as cure requires the doctor to empathise with what the patient is feeling thereby requiring both an act of imagination and of the heart.  The chapter, of course, continues with with stories that illustrate the points enunciated by his colleague and accepted by his disciple. 

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

This is a compendium of original critical essays on a wide range of topics written by a diverse group of scholars of what has traditionally been called "medical humanities." The editors argue for a change of name to "health humanities," pointing out that "medical" has a narrow frame of reference - evoking primarily the point of view of physicians and their interaction with patients, as well as the institution of biomedicine. Such a focus may exclude the myriad allied individuals and communities who work with patients and their families. The editors quote Daniel Goldberg, who notes that the health humanities should have the primary goal of "health and human flourishing rather than  . .  the delivery of medical care" (quoted on page 7).

The three editors are innovative contemporary scholar-educators in the field of medical/health humanities. They advocate Megan Boler's "pedagogy of discomfort" (quoted on page 8) and wish to provide students and educators "an opportunity to examine critically the origins and nature of their personal beliefs and values, beliefs and values embedded in the curriculum and the learning environment, as well as institutional policies - all of which intersect" . . and influence quality of care (8). In their own work and in this Reader the editors favor an approach to health humanities education and research that "challenge[s] the hegemony of a biomedicine that contributes to disparities and the discrimination of persons who don't quite fit the codified and naturalized norms of health."

The book is divided into 12 parts, each comprising three or four chapters: Disease and Illness, Disability, Death and Dying, Patient-Professional Relationships, The Body, Gender and Sexuality, Race and Class, Aging, Mental Illness, Spirituality and Religion, Science and Technology, and Health Professions Education. At the end of each section there is "an imaginative or reflective piece" on the topic. A wide range of disciplines is represented, including disability studies, history, bioethics, philosophy, literature, media studies, law, and medicine. Some of the authors are well-known and have been practicing their profession for many years (for example, Arthur Frank, Sander Gilman, Anne Hudson Jones, Martha Montello, John Lantos) while others have entered the field more recently and are gaining increasing attention (for example, Rebecca Garden, Daniel Goldberg, Allan Peterkin, Sayantani DasGupta).

The Reader is well documented: there are footnotes at the end of most chapters, a references section of 50 pages, notes on contributors, and a 72-page index.

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Polio: An American Story

Oshinsky, David

Last Updated: Sep-16-2014
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: History

Summary:

 In his introduction, the author summarizes the history of polio’s first appearance as an epidemic in the United States, the ensuing research, subsequent applications of new information, attempts at abatement and ultimate success in the development of preventative measures.

Embedded in the successes and failures of the research applications are the details of human interactions.  Their impact on the goal of achieving near extinction of polio in America constitutes a dramatic subplot, which the historian adroitly weaves into the work.

For the reader who has only a sketchy knowledge of this important period in medical research, this history provides details of human exchanges, conflicts and resolutions necessary to bring the scientific developments to fruition.  Central among the multiple struggles rests the basic disagreement between Jonas Salk and Albert Sabin, two of the most prominent scientists working against the clock to develop the most effective and safest form of immunization.  Each new surge of the disease added to the urgency of the problem as well as to the question of the best solution.  Salk felt strongly that the immune system should be stimulated by a killed virus preparation, while Sabin was equally convinced that only the living virus could provide this need.  Each view had its own cadre of supporters and of opponents.

Funding issues also troubled those fighting the polio epidemics.  The March of Dimes is credited with raising a record $55 million in the fight against polio in early 1954, becoming the first major infectious disease battle to benefit from a concerted public awareness campaign and demonstrating the power of such volunteer driven efforts to supplement public and other private funding efforts.

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In the course of sharing her own experience of breast cancer diagnosis and treatment, the writer offers personal reflections on coping with each of a number of specific challenges most American women with breast cancer face:  desperation, fear, sadness, anger, guilt, overwhelming choices about treatment, side-effects of treatment, grief, adjusting to a new "normal," shifts in relationship, and rethinking spirituality.  She raises hard questions in a compassionate way, encouraging readers to use the experience of illness as an occasion for examining and growing into a new phase of psycho-spiritual maturity.

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Summary:

This book combines social history with personal memoir. It serves as a reflection on how the various challenges of living with chronic illness have shifted over time, and how they are still real and present for the increasing portion of the population who suffer from ills invisible to others and often hard to account for.  The book's brief treatments of cultural and medical approaches to chronic illness, from ancient practices to "patients in the digital age," provide a broad perspective against which to consider current legislative, political, medical, and personal concerns for those coping with chronic illness or disability. 

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