Showing 11 - 20 of 840 annotations tagged with the keyword "Caregivers"

Every Note Played

Genova, Lisa

Last Updated: Apr-10-2018

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This is a dramatic and moving story about a concert pianist who, at 45 years of age, suddenly and inexplicably, has ALS, and also equally about his ex-wife Karina, who takes on his care throughout his slow, inevitable, and lethal decline. As many readers know, ALS (Amyotrophic Lateral Sclerosis). or “Lou Gherig’s disease,” hardens the motor nerves so that, progressively, there is no more control of muscles throughout the body. Not many readers know, however, the difficult path such patients and their families must pursue. This sensitive and detailed novel takes readers powerfully into the world of ALS, a disease for which there is today no cure.                                                                                      

Obsessed with his musical career and international travel, Richard has paid little attention to Karina and their daughter, Grace, and he has had affairs with other women. Karina has deceived him about her inability to bear more children. Because of their move from New York City to Boston, Karina, also a gifted pianist, has lost a possible career in jazz and now gives piano lessons to unpromising students. 

The first several chapters alternate between Richard and Karina. Although divorced from him, she brings him, now an ALS patient, back into the home they once shared. Various nurses, doctors, and other specialists try to explain the difficult future that includes certain loss of body functions, but Richard and Karina are slow to comprehend these. Despite their denial, they are forced to come to terms with Richard’s progressive decline and, finally, death.     
          
Richard loses the ability to use his hands, then his arms. He needs a special machine to breathe at night. Soon he has paid caregivers for parts of the day; these include a cheery and admirable man named Bill. No longer able to eat, Richard has a feeding tube. Later he needs a hospital bed. Also a Head Mouse to work his computer. Also an elaborate wheelchair. With unresolved issues in the past, Richard and Karina are emotionally apart—even with feelings of hate and rage—even while she cares for him.  

Karina’s walking partner Elise, a teacher, helps her stay sane. Karina travels to New Orleans with Elise and her class and finds her interest in jazz reawakened. No longer able to breathe even with assistance, should Richard go on to mechanical ventilation that will require 24-hour care at enormous expense? A choice is made. Richard dies, with various resolutions before and after his death.  

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The Dark Flood Rises

Drabble, Margaret

Last Updated: Apr-09-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Fran, an aging but energetic expert on elder housing, drives around the English countryside visiting facilities and also friends and family.  She, herself, is not at all ready to go gentle into the good night so many others are facing.  But everywhere she encounters reminders of mortality--her son's fiancee suddenly dies; an old friend is dying a lingering death of cancer; others in her circle of family and friends are facing their own or others' mortality in various ways, including natural disasters like earthquake and flood.  The episodic story takes place in England and in the Canary Islands; the large cast of characters are linked by intersecting stories and by their mortality, of which they, and the reader, are recurrently reminded.    

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Calcedonies

Nisker, Jeffrey

Last Updated: Jan-17-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Plays

Genre: Play

Summary:

The play has two characters: Ruth and Friend (who is a male doctor).Ruth is an engaging, straight-talking quadriplegic who can zip and dance with her chin-operated wheelchair and takes delight in terrorizing medical staff both physically and verbally. She wants to write poetry and is waiting for a device to make it possible for her to use a computer. She keeps developing bedsores that threaten her life and require long admissions to the hospital before they will heal. She desperately wants to live no matter what happens, as she feels that having no mind would be worse than having no body.Friend is a male doctor with children who is ashamed of having examined her while she was unaware. Burdened with his guilt, he asks to be her “friend.” Ruth is skeptical and runs circles around him, but eventually comes to trust him and believe in his sincerity.She makes him a witness to her advance directive to instigate all heroic measures, as she is afraid of the kindly "ethical" and cost-effective arguments not to treat the disabled. But Ruth dies horribly from sepsis, and Friend is helpless to prevent it. She never obtains the device that would have allowed her to put her poems into printed words.

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Sutton's Law

Wright, Linda; Orient, Jane

Last Updated: Jan-05-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Intern, Maggie Altman, begins her postgraduate training in a large Texas hospital where a new computerized system has been implemented to improve service. She pours heart and soul into her work, but her admissions always seem to be the sickest patients who keep dying, sometimes inexplicably. Maggie becomes suspicious of her colleagues and of Dr. Milton Silber, an irrascible, retired clinician with no fondness for the new technology. Silber also happens to be a financial genius. Overhearing conversations and finding puzzling papers, Maggie imagines a scam, in which her supervisors may be eliminating dying patients to reduce costs, improve statistics, and siphon funds to their own pockets.

The bad outcomes for Maggie's patients are noticed and criticized, and she is pressured to drop out, switch hospitals, or go back into research. She senses that the perpetrators are aware of her suspicions and send her the worst patients in an effort to eliminate her. She trusts no one. These worries are compounded by her own illness and her accidental discovery in the morgue of a traffic in unclaimed bodies. With the help of excellent clinical skills, true friends, Dr. Silber, and a new love interest who is a budding financial genius, she survives physical and emotional violence and solves the mystery of patient homicides, poisonings, and fraud.

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Summary:

Dr. Monika Renz’s work with dying patients is unusual if not unique in the way she appropriates and applies insights from Jungian depth psychology, practices available in patients’ faith traditions, and musically guided meditation to invite and support the spiritual experiences that so often come, bidden or unbidden, near the end of life.  An experienced oncologist, Dr. Renz offers carefully amassed data to support her advocacy of focused practices of spiritual care as a dimension of palliative care, but is also quite comfortable with the fact that “neither the frequency nor the visible effects of experiences of the transcendent prove that such experience is an expression of grace” because “unverifiability is intrinsic to grace.”  Still, her long experience leads her to assert not only that “grace” can be a useful, practical, operative word for what professional caregivers may witness and mediate but also that affirmation and support of patients’ spiritual, religious, or transcendent experiences in the course of dying can amplify and multiply moments of grace, which manifest as sudden, deep peace in the very midst of pain, profound acceptance, openness to reconciliations, or significant awakenings from torpor that allow needed moments of closure with loved ones.  Describing herself as “an open-minded religious person and a practicing Christian,” she reminds readers that God is a loanword, whose basic form in Germanic was gaudam, a neutral participle.  Depending on the Indo-Germanic root, the word means “the called upon” or “the one sacrificed to . . . .”  Openness to the divine in both patients and caregivers, Dr. Renz argues, can and does make end-of-life care a shared journey of discovery and offer everyone involved a valuable reminder that medicine is practiced, always, at the threshold of mystery.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Victoria Sweet describes her training in medical school, residency, and work in various clinics and hospitals. From all of these she forms her own sense of what medical care should include: “Slow Medicine” that uses, ironically, the best aspects of today’s “Fast” medicine.   

Her dramatic “Introduction: Medicine Without a Soul” describes poor—even dangerous—care given to her elderly father at a hospital. An experienced physician, she calls Hospice and saves him from a “Death Express” the hospital has “quality-assured” (pp. 6, 8). 
 
The book continues with 16 chapters in chronological order. The first ten describe Sweet from a late ‘60s Stanford undergrad and “a sort of hippie” (p.14), next a learner of “facts” in preclinical studies at Harvard, plus the clinical rotations (including Psychiatry, Internal Medicine, Pediatrics, and electives), then an internship as a doctor and her work in various clinics and hospitals. Throughout she’s collecting skills, concepts, even philosophies (Jung, feminism, Chinese chi, value of stories). She also describes particular patients important to her learning. She dislikes “just good enough” medicine at the VA (p. 95), “unapologetic budgetarianism” (p 141), medicine that is reductive and uncaring, and futile care for dying patients.  

Halfway through, we find an “Intermission: In which Fast Medicine and Slow Medicine Come Together.” With a year off, Sweet signs on as physician for a trekking group headed for Nepal. Unexpectedly, she treats an Englishman in the Himalayas. Returning home, she treats a man whose pulse is declining and rides a helicopter with him to a hospital. She realizes that she can take on the full responsibility of being a doctor, including when to use Fast medicine and when to use Slow.  

The following chapters deal with the 1980s emergence of AIDS, a hand injury to Sweet (she sees herself as “a wounded healer,” p. 182), her new understanding of medicine as “A Craft, A Science, and an Art” (Chapter 12) and conflicts between medical care and economics-driven medicine (“checked boxes,” administrators, quality assurance, even outright corruption).  She scorns use of the labels “health-care providers” and “health-care consumers” (p. 211) and discovers Hildegard of Bingen’s medieval vision of medicine. She works for 20 years at Laguna Honda, the topic of her earlier book God’s Hotel (2012). Chapter 16 closes the book with “A Slow Medicine Manifesto.”  

Sweet pays tribute to her teachers, both in a dedication to the book, and throughout the pages: professors, preceptors, nurses—especially a series of Irish Kathleens—and patients. There are some 20 case studies of patients throughout the book, their medical dilemmas, their personalities, and Sweet’s Slow Medicine that involves creating a healing relationship with them, finding the right path for treatment, even watching and waiting.

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Second Bloom

Krugovoy Silver, Anya

Last Updated: Dec-05-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

These poems are not a cancer chronicle, but the experience of living with cancer is threaded through them in a way that illustrates beautifully how awareness of illness may permeate daily life, but is foregrounded and backgrounded, reshaped and revisited in shifting ways as it takes its course.  They encompass moments in family life, moments in the hospital, moments of spiritual longing and awareness of loss.  Together they offer a record of accommodation, acclimation, and complex acceptance.

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Annotated by:
Natter, Michael

Primary Category: Literature / Nonfiction

Genre: Graphic Novel

Summary:

Taking Turns, Stories from HIV/AIDS Care Unit 371, is a graphic novel written and illustrated by nurse and artist, MK Czerwiec. In it, she details what it was like to be a nurse during the AIDs epidemic in Chicago in the 1990s. The book, however, is much more than a story about AIDS care during that time. Czerweic tackles patient/provider relationships, boundaries, hospital struggles, the role of art in medicine and healing, but most profoundly: death and dying. 

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Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

This Side of Doctoring is an anthology published in 2002 about the experiences of women in medicine. While the essays span multiple centuries, most are from the past 50 years. They reflect on a multitude of stages in the authors’ personal and professional lives. In 344 pages divided into twelve sections, including "Early Pioneers," "Life in the Trenches," and "Mothering and Doctoring," the 146 authors recount - in excerpts from published memoirs, previously published and unpublished essays, poems and other writings, many of them composed solely for this collection - what it was then and what it was in 2002 to be a woman becoming a doctor in the U.S.. All but a handful of the authors are physicians or surgeons. There is a heavy representation from institutions on both coasts, especially the Northeast. Four men were invited to reflect on being married to physician wives. There is one anonymous essay concerning sexual harassment and a final essay from a mother and daughter, both physicians.   Beginning with the first American female physicians in the mid-19th century, like historic ground-breakers Elizabeth Blackwell and Mary Putnam Jacobi, the anthology proceeds through the phases of medical school, residency, early and mid-careers, up to reflections from older physicians on a life spent in medicine. Many of the authors have names well known in the medical humanities, including Marcia Angell, Leon Eisenberg, Perri Klass, Danielle Ofri, Audrey Shafer, and Marjorie Spurrier Sirridge, to mention a few. 

The essays and poems and letters have, as a partial listing, the following subjects: family influences in becoming a physician; professional friendships; marriage; children and their impact on a woman’s career in medicine; the decision not to have children; ill family members; illness as a physician; establishing one's sexuality as a physician; struggles with male physicians and their egos; mentors, both female and male; memorable patients (often terminal or dying); the life of a wife-physician, or mother-physician; the guilt and sacrifice that accompany such a dual life; the importance - and easy loss - of personal time or what internist Catherine Chang calls “self-care” (page 334).
  The anthology also touches on how women have changed the practice of medicine in various ways, prompted by the growing realization, as family practice physician Alison Moll puts it, "that I didn't have to practice in the traditional way" (page 185)  The authors write about the wisdom of setting limits; training or working part-time or sharing a position with another woman; and the constant face-off with decisions, especially those not normally confronting an American man becoming a doctor. 
One conclusion is evident before the reader is halfway through the book: there are many approaches to becoming a fulfilled female physician including finding one’s identity in the field.  Implicit in most of the essays and writings is the lament from obstetrician-gynecologist Gayle Shore Mayer: "Where is the self ? There are pieces of me everywhere", (page 275) recalling a similar cry from Virginia Woolf's Orlando, another essentially female soul trying to find what Richard Selzer has called "The Exact Location of the Soul".
 Several authors discover that female physicians have unique gifts to offer their patients. As internist Rebekah Wang-Cheng writes, “I am a better physician because I am a mother, and I know because of my experiences as a physician that I am a better mother.” (page 151) 

There are sections at the end devoted to a glossary for the lay reader, resources for women (as of 2002), and generous notes about the contributors (which section also serves as a useful index of each's contributions).

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Eros and Illness

Morris, David

Last Updated: Oct-31-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Several threads tie together this ambitious, beautifully digressive reflection on eros and logos in the experience of illness and the conduct of medicine and health care, which takes into account what a complex striation of cultural legacies, social and political pressures, and beliefs go into both.  Framing his reflections on the role of unknowing, altered states, inexplicable events, desire, hope, love, and mystery in illness and healing is a fragmented, poignant narrative of Morris’s own experience of watching his wife succumb to the ravages of early Alzheimer’s. 

Her disease is one that leads both professional and intimate caregivers to the same question:  what do you do when there’s nothing left for scientific medicine to do?  Conversations about palliative care are broadening, he points out, and medical education is making more room for the kind of reflection the arts invite and for spirituality as a dimension of illness experience and caregiving.  Guidance in such explorations can be found in ancient literature, especially in the archetypes provided by the Greek and Roman myths.  Morris makes astute and helpful use of his own considerable training in literary studies to provide examples of how eros and logos—complementary contraries—have been conceived and embodied in a somewhat polarized culture and how incomplete health care is when it doesn’t foster the capacity to dwell in and with unknowing, possibility, indeterminacy, and mystery.  Knowing the limits of scientific medicine may, paradoxically, make it better.  Certainly it can help keep our engagements with illness—always relational, always disruptive, most often to some degree bewildering—humane.




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