Showing 31 - 40 of 827 annotations tagged with the keyword "Caregivers"

My Father's Brain

Franzen, Jonathan

Last Updated: Apr-12-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Essay

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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Attending Others

Volck, Brian

Last Updated: Apr-11-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir of a life in medicine takes the writer from St. Louis to a Navajo reservation to Central America to the east coast and from urban hospitals to ill-equipped rural clinics. It offers a wide range of reflections on encounters with patients that widen and deepen his sense of calling and  understanding of what it means to do healing work.  He learns to listen to tribal elders, to what children communicate without words, to worried parents, and to his own intuition while calling on all the skills he acquired in a rigorous medical education.  Always drawn to writing, Volck takes his writing work (and play) as seriously as his medical practice, and muses on the role of writing in the medical life as he goes along.

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When Breath Becomes Air

Kalanithi, Paul

Last Updated: Feb-18-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Paul Kalanithi, diagnosed with stage IV metastatic lung cancer when he was a neurosurgery resident at Stanford University, was faced with a decision. Should he truncate his career in neurosurgery in order to become a writer - a career he had always envisioned for himself after completing a couple of decades of neurosurgery practice? Married to Lucy Kalanithi, an internist he had met in medical school, Paul’s career and future had looked bright and promising. But as he entered his final year of a seven-year residency, symptoms of excruciating back pain and significant weight loss began. Garbed in a hospital gown, he examines his own CT scan – this is how we meet Paul at the beginning of the Prologue. He then writes of the relatively brief period of misdiagnosis prior to the CT scan. With the initial negative plain x-rays, he is started on nonsteroidal anti-inflammatory drugs. But breakthrough pain and continued weight loss leads to the CT. Paul the physician understands the death sentence the images portend; Paul the patient is just beginning his journey. The diagnosis and treatment cause him to reassess his decisions about his life, to decide to father a child even though he knows he will never see the child grow up, and ultimately to write a memoir, essentially for his daughter.

Paul had graduated from Stanford with undergraduate and master’s degrees which reflected his dual love of literature and science. He combined these in a second master’s degree from Cambridge University in the history and philosophy of science and medicine before attending Yale for his medical degree. He and his wife return to California for residencies. The book is largely a blend of his dual interests: a deep and abiding love and faith in literature and how words can reveal truths, and a passion for the practice and science of neurosurgery. The rupture of fatal illness into his life interrupts his dogged trajectory towards an academic medical career, and, like all ruptures, confounds expectations and reorients priorities.

The book has five parts: a foreword by physician-writer Abraham Verghese, who notes the stunning prose Paul produced for an initial article in The New York Times and exhorts the reader to “Listen to Paul” (page xix); a brief prologue; two parts by Paul Kalanithi (Part I: In Perfect Health I Begin, and Part II: Cease Not till Death); and a stunning, heart-breaking epilogue by Lucy Kalanithi. In the epilogue, written with as many literary references and allusions as her husband’s writing includes, Lucy provides the reader with a gentle and loving portrait of her husband in his final days, reaffirms his joy in their daughter Cady, and chronicles how she kept her promise to her dying husband to shepherd his manuscript into print.

The bulk of the book is memoir – a childhood in Arizona and an aversion to pursuing a life in medicine due to his hard-working cardiologist-father, experiences at Stanford which eventually led him to reverse his decision to avoid a medical career, the stages of his medical career and caring for patients, and his devastating cancer. Though initially responsive to treatment—and indeed, the treatment enables him to complete his residency and decide to father a child with Lucy—the cancer is, as prognosticated from the diagnosis, fatal.

What makes this memoir so much more than an exercise in memory and a tribute to the herculean effort to write while sapped by cancer and its treatment, are the philosophical turns, the clear love of words and literature, and the poignancy of the writing. He begins reading fiction and nonfiction again: “I was searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again. The privilege of direct experience had led me away from literary and academic work, yet now I felt that to understand my own direct experiences, I would have to translate them back into language…I needed words to go forward.” (pp 148-9) Paul’s writing ends with what is arguably some of the most poetic prose ever written. He concludes by speaking directly to his infant daughter: “When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.” (p. 199)

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The Death of Cancer

DeVita, Vincent

Last Updated: Feb-04-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The book offers a detailed account by one of the nation’s leading cancer researchers of developments in chemotherapy over the past several decades, as well as the recent history of surgical and radiation treatments in the “war on cancer”—a term he resisted at first but finally embraced with full understanding of its implications.  The narrative touches on many of the writer’s own struggles over economic, political, and moral implications of what a NYT reviewer described as a “take-no-prisoners” approach to cure.  He also includes stories about disagreements with other researchers that give some insight into the acrimony that is part of high-stakes science.  At the NIH and later as head of the National Cancer Institute, DeVita faced many decisions about distribution of resources, how much to put patients at risk, and whom to include in clinical trials.  He provides his own point of view on those controversies frankly.  Not much mention is made of the causes of cancer, of nutritional or other complementary approaches, or the environmental factors in the spread of cancer. The strong focus on the book is on the development of chemotherapeutic treatments that have succeeded in raising survival rates, though few current statistics are cited.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.
           

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.
           

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Chaplain-poet Nancy Adams-Cogan's 3rd chapbook of poems complements her earlier work as "a receiver of stories" (p.1). The theme for this collection of 39 poems is dementia and the poems are smartly accompanied by a number of photos by Rod Stampe.  What comes through in these poems is the deep humanity of those who struggle with memory loss—both the individual experiencing it directly and the family members or caregivers accompanying them on their journey. Adams-Cogan captures well the "many faces" of dementia and how those faces "may vary day-by-day-by-day" (p.84). The poet also takes a close look at her aged and aging selves in the poems "Myself in Decline" and "Entanglements."

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Side Effects May Vary

Murphy, Julie

Last Updated: Jan-07-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

At 16, Alice is diagnosed with leukemia, and is given a dire prognosis.  Assuming she has months to live, she undergoes chemotherapy with the support of her lifelong friend, Harvey, whose frank and deepening love she is uncertain about returning.  On days when she has enough energy and the nausea abates, she works on a "bucket list" with Harvey's sometimes reluctant help, since the list includes revenge on two classmates who have hurt and humiliated her.  When, months into treatment, she goes into unexpected full remission, Alice has to come to terms with the consequences of some of her revenge strategies and reassess the depth of a relationship with Harvey that may last far longer than she thought she had.  Given an opportunity to choose life on new terms, she considers those new terms in a more adult way, chastened, focused, and grateful for a chance to make new choices.

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Call the Midwife

Worth, Jennifer

Last Updated: Dec-15-2015
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Many are familiar with these stories from the author's practice as a midwife among the urban poor in London's East End in the 1950s.  Each piece stands alone as a story about a particular case. Many of them are rich with the drama of emergency interventions, birth in complicated families (most of them poor), home births in squalid conditions, and the efforts of midwives to improve public health services, sanitation, and pre- and post-natal care with limited resources in a city decimated by wartime bombings.  As a gallery of the different types of women in the Anglican religious order that housed the midwives and administered their services, and the different types of women who lived, survived, and even thrived in the most depressing part of London, the book provides a fascinating angle on social and medical history and women's studies.

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Skin for Ricky

Schiedermayer, David

Last Updated: Dec-10-2015
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The physician-narrator is looking in on a 30 year old patient named Ricky. Readers immediately learn that the patient has cerebral palsy: his ear mashed flat, his neck contorted into a tight C, almost quadriplegic. These first stanza clinical observations are indisputable. The narrator then shifts from the medical facts to more subjective thoughts ranging from Ricky’s previous treatment responses and medications to Ricky’s adult heterosexual response to the proximity of a female, and finally to the narrator’s own wishes for this patient. Ricky’s parents, the narrator notes, have similarly but uncomfortably witnessed their son’s ogling response to a pretty nurse or doctor or a provocative adult television image. The parents’ response, he notes, to these observations has been to redirect Ricky’s focus by switching the channel to Nickelodeon, a program geared towards children.  Not unlike situations in several writings by William Carlos Williams, this physician has moved from objective medical information to his own interior thoughts about Ricky’s circumstances and confinement.  Rather than sticking with the facts associated with the patient’s medical condition, he wonders, imagines, and expresses in this poem seemingly un-doctorly thoughts. 

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Fracture

Miranda, Megan

Last Updated: Dec-08-2015
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

 After eleven minutes underwater at near-freezing temperature, Delaney Maxwell, who appeared dead upon rescue, is revived.  Unlikely as her survival seems, the return of apparently normal brain function seems even more unlikely, yet after a few days she is allowed to go home with medications and resume a near-normal life. But after-effects of her trauma linger, the most dramatic of which is that she develops a sixth sense about impending death. She hides this recurrent sensation from her parents, and from her best friend, Decker, who rescued her, but finds that she shares the experience with a hospital aide who, like her, suffered a coma after a car accident that killed his family members. Like her, he senses death in others. Gradually Delaney realizes that “normal” isn’t a place she’s likely to return to, and that Troy, the aide whose life has been a kind of “hell” since his own trauma, is even further from normal than she. Troy seems to feel that it is his mission to help hasten death for those who are dying, to prevent prolonged suffering.  The story follows her efforts to stop him, and to communicate with close friends, especially Decker, in spite of the secret she carries about her own altered awareness. When her efforts to save a friend who is dying of a seizure fail, Delaney faces another moment of crisis, compounded by Troy’s own suicidal desire to end his own suffering and hers with it. In the midst of these new traumas a clarity she has lost about what it means to choose life returns to her, and with it the possibility of a loving openness with parents and friends about the mysteries of her own brain and heart.

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