Showing 11 - 20 of 183 annotations tagged with the keyword "Dementia"

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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Best Boy

Gottlieb, Eli

Last Updated: Nov-09-2015

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Best Boy is a novel about Todd Aaron, a 54-year-old autistic man who has lived for 40 years in a Payton LivingCenter (sic); he was involuntarily committed to this facility. Todd has been in five previous places for congregate living, but Payton seems to be the best for him, thanks in part to a loving caregiver, Raykene. Todd has accepted the institutional “Law” of Payton and takes his drugs right on schedule, including Risperdal, an antipsychotic that slows him down, making a “roof” over him and muffling, he says, “the voice in my brain.”  The story is told from Todd’s point of view, often with startling imagery:  he pictures his dead parents turning into giant cigars, a raindrop “explodes,” and, when upset, he rocks back and forth and feels “volts.”  Now and then he recalls that his mother called him her “best boy.”
   
Into this stable setting come three personified disruptions. The first two are fellow patients, Terry Doon (a pun on “doom”?), a brain-injured roommate who teases, torments, and bullies Todd, and Martine Calhoun. While Terry disrupts Todd’s living space, Martine is a siren who lures him to different parts of Payton’s campus; she is also a rebel who urges him to stop taking Risperdal and shows him how to hide the drug in his hand and get rid of it later.   

The third is Mike Hinton, a day staffer who lies, manipulates, and in general mistreats Todd. Todd understands Hinton as evil and entertains violence against him—but does not act. Hinton has sex with a female patient who dies, apparently a suicide, although the language of Payton’s staff, as reported by Todd, euphemistically hides the truth.

Todd has the “Idea” of escape and sets out, on foot, to go 744 miles to “home.” A state policeman soon returns him to Payton.

Now and then Todd’s younger brother Nate calls, often while drinking. Near the end of the book, Nate and his wife Beth take Todd to his childhood home, where he had been abused physically and mentally. In a moving scene, Todd enters the only unchanged area, a crawl space and feels the return he yearned for.            

All three tormentors leave Payton, and there is a surprising resolution for Todd.  The balance and harmony of Payton’s LivingCenter are restored, and Todd, reminded by Raykene, affirms that “Somebody always loved me.” 

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

The author, an experienced surgeon, believes that we will be less frightened by the prospect of death if we understand it as a normal biologic process. He points out that 80 percent of deaths in this country now occur in hospitals and are therefore "sanitized," hidden from view, and from public comprehension. He describes the death process for six major killers: heart disease, stroke, AIDS, cancer, accidents/suicide, and Alzheimer's disease.But the power of the book is in its intensely personal depiction of these events and in the lessons which Nuland draws from his experiences. The message is twofold: very few will "die with dignity" so that (1) it behooves us to lead a productive LIFE of dignity, (2) physicians, patients, and families should behave appropriately to allow nature to take its course instead of treating death as the enemy to be staved off at any cost. Only then will it be possible for us to die in the "best" possible way--in relative comfort, in the company of those we love/who love us.

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Summary:

In 1847, one of every six women whose babies were delivered by the medical students and supervising doctors at Allgemeine Krankenhaus (General Hospital) in Vienna died of puerperal fever (also known as childbed fever). In contrast, the incidence of this disease in women delivered by hospital midwives was dramatically lower and puerperal fever was quite rare when mothers had their babies born at home.While a few physicians (most notably Alexander Gordon and Oliver Wendell Holmes) realized that childbed fever was a contagious process, it was Semmelweis who identified the nature of the problem as stemming from the failure of obstetricians and medical students to wash their hands and change their clothing, especially after performing autopsies or doing surgery. He mandated that doctors and students wash with a disinfectant (chloride of lime) before examining any woman in labor.Despite the dramatic reduction of maternal mortality on his obstetrical unit, his ideas and methods were not well received. Semmelweis was reluctant to conduct experiments on animals to prove his theory and resisted publishing his findings in any medical journal. When he finally did write a book, The Etiology, the Concept, and the Prophylaxis of Childbed Fever, it was difficult to read and failed to impress many obstetrical experts.With his health failing and his behavior increasingly erratic and inappropriate, Semmelweis was committed to a state-run mental hospital. He died two weeks later. The official cause of death was sepsis secondary to an infection of his finger. The author is convinced, however, based on the autopsy report and findings upon exhumation of the body in 1963, that Semmelweis was beaten to death by the staff at the asylum. He may well have been suffering from Alzheimer's presenile dementia at the time.

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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:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Cartoonist Roz Chast's memoir is a rich, satiric, forthright, and at times deeply disturbing exploration of how she negotiated the decline of her aging parents. Disturbing because the description of all the elements with which she had to deal in easing them toward death highlights the myriad difficulties and complexities many of us will also face. Her account is centered on her relationship with her parents, moving back and forth between her childhood (unhappy) and the more recent past. Chast brings to life her father and mother's disparate personalities and makes no bones about her fraught interaction with them, especially with her mother, and her ambivalence about having to take responsibility for helping them in their final years,.

The memoir is divided into 18 chapters plus introduction and epilogue. The book has elements of multi media presentation, consisting of cartoons accompanied by extensive text in "balloons"; additional handwritten commentary - sometimes occupying an entire page; photographs - of family, and rooms in her parents' Brooklyn apartment plus items found therein; reproductions of her mother's poetry, typed and handwritten; and, finally, drawings (not cartoons) of her mother in her last days.

Chast notes that she is an only child and that her parents were older than most parents while she was growing up. The implication: the burden of taking responsibility rested solely on her and became an issue while she was raising her own family, when her parents were in their 80s. Chast makes clear that she was completely unprepared for everything that would be involved and that her parents had done nothing and would do nothing to make their own preparations for disability - "Can't we talk about something more pleasant?"

Chast's story begins with her impulsive visit - after an absence of 11 years- to the Brooklyn apartment where she grew up and where her parents still reside. She is appalled by the grime and clutter they live in. A few years later, when her parents are 90, Chast reluctantly visits more regularly, speaks to them daily on the phone, and hopes their lives will continue uneventfully and "maybe they'll both die at the same time in their sleep" (22). As Chast visits her parents more frequently the idiosyncrasies that used to irritate her still irritate her and there is no escape - they are too old and needy to run away from. Complicating the situation, her parents deny their neediness and reject most interventions that might help them in their daily lives.

When her parents are 93, after her mother falls a few times and her father shows increasing signs of forgetfulness, Chast manages to persuade her parents that they should together consult an "elder lawyer" - a specialist in "the two things that my parents and I found it most difficult to discuss: DEATH AND MONEY" (38). Even with the legalities this step puts in place, Chast feels overwhelmed when her mother is hospitalized for acute diverticulitis, leaving Chast to care for her increasingly senile father, prepare for her mother's return home, and worry about how her parents will be able to live on their own. The author makes fun of her helplessness: when she arranges for an ambulette to take her mother home from the hospital Chast congratulates herself, admitting "I had a pathetically large amount of pride in myself for doing things like that" (84).

A year later it is clear to all concerned that Chast's parents cannot continue to live alone. Chast is fortunate to quickly find a spot in an assisted living facility ("The Place") close to her own home. After settling her parents there she must sort through and empty out their Brooklyn apartment. A major undertaking. After a while "I was sick of the ransacking, the picking over and deciding, the dust, and the not particularly interesting trips down memory lane" (121). At the same time, Chast must arrange for her parents' aides, buy furniture and other items - total costs were high and not covered by insurance - "it was enraging and depressing" (128); how long her parents' savings and pensions would cover their expenses became a constant worry for Chast. Money worries became more acute after Chast's father fell and broke his hip, needing additional daily care. "I felt like a disgusting person, worrying about the money" (145). At the same time, Chast mourns her father's obvious decline and resents that her mother is insensitive to her feelings "it was, as it always was, completely about her" (141).

Chast's father dies (miserably), aged 95; her mother lives for two more years, in and out of a nursing home, not eating, rallying under the care of a hired attendant, then fading again. During this period, as the mother herself notes, "her brains were starting to melt." Chast feels the need to "have a final conversation with my mother about the past" (201), expressing the wish that they could have been better friends while Chast was growing up. The response is not what Chast had hoped for, and she is surprised by how upset she feels. Yet a week before Chast's mother dies, the mother declares love for her daughter.

When her mother is no longer communicative, Chast draws her as she lies in bed - Chast's manner of communication, bringing to mind other artists who drew dying loved ones in their final days (see annotations of Sue Coe's "The Last Eleven Days" and Ferdinand Hodler's "The Dying Valentine Godé-Darel" ). In the epilogue, Chast explains her decision to store the "cremains" of both parents, separately, in her bedroom closet. "Maybe when I completely give up this desire to make it right with my mother, I'll know what to do with their cremains. Or, maybe not" (227).

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Black Bag Moon

Butler, Susan

Last Updated: Apr-19-2013
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

Black Bag Moon is a collection (one is tempted to say a "mixed black bag") of short stories (but not clearly "short fictions" - clarified below) about medical patients. The reputed authors are identified as these patients' physicians, who recount these stories in first person. By my math, there are nine authors who narrate stories about 37 patients in 29 chapters. Most chapters have two patients in unrelated stories that sometimes share a theme. Several of the authors know each other as colleagues and two are a married medical couple. Most of the stories occur in Australia or New Zealand but some are in places are as far flung as England, Scotland and unidentified, possibly fictional, islands in the South Pacific. The practitioners are, for the most part, family physicians and care for people of all ages, providing care for everything from breast masses to congestive heart failure to trauma to occupational health to - almost overwhelmingly - mental illness threatening severe violence. The last - serious mental illness -  is, as are all the patients and their illnesses in this volume, almost exotically different from anything most readers of this database are likely to encounter as health care providers or readers. Think Crocodile Dundee or perhaps television's Dr. Quinn or ‘Doc' Adams of Gunsmoke. Or all the above but in the late 20th Century Outback.

Since most of the stories involve working men and women - mainly men - there is a decided flavor of  A. J. (Archibald Joseph) Cronin's The Citadel to the stories; but the peculiar aspect of Australia's frontier pervades each encounter with the patients in this book, whether they are being treated over the radio for breast lumps, being airlifted to the hospital for a badly broken elbow, or becoming demented from environmental toxins in a land and time wherein OSHA and DEP (and the principles underlying them) might as well be acronyms from Mars.

Curiously, for fiction, there are intermittent footnotes to literary (Honore de Balzac, Soubiran) sources, historical figures (Hippocrates) and relevant texts on subjects covered in the stories, e.g., petrol-sniffing, tropical diseases, and physical diagnosis. 

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Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care.  Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.

The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.

In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”

When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.

In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.

On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women. 

The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.

Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135). 

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Summary:

This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.

            Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.         

            There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.

            Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.

   Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity. 

Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.

  The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)

            As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.

            The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.           

            By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions. 

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