Showing 1 - 10 of 887 annotations tagged with the keyword "Caregivers"

Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

All the [medical] world’s a stage! In elegant prose, with Felliniesque flights into whimsical metaphor, physician-historian-playwright Charles Hayter describes his encounters with cancer, as a doctor and as a son, and how the experience changed him as a person. 

Just as he finishes his residency training as a cancer specialist, his stoic physician father develops cancer. The story of that family illness is interwoven with vivid case histories of patients, recounted personally rather than clinically. These patients display many of the characteristic reactions and behaviors of his own father. 

Several other themes are prominent: the losing battle against death – or rather Death--who is a character lurking in the corners of the consultation rooms; the tensions of a son trying to please his difficult parents with advice and understanding that they seem not to want; the bravery of a gay man coming out to his wife and children to find a new place in the world. 
 

These struggles are placed on a background of the nebulous status of radiation therapy, a maligned and misunderstood specialty.

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Wild Boy

Dawson, Jill

Last Updated: Jun-15-2022
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Young doctor Jean-Marc Itard is serving in the Paris home for deaf-mute children. When a “wild boy” without speech is found near a village in Aveyron, France, Itard accepts the challenge of educating him. Many senior colleagues, including Philippe Pinel, opine that it will be impossible, even when Itard determines that the boy is not deaf. The lad, now named Victor, seems to be about ten years old, but his small size owing to malnutrition may be deceptive; he quickly reaches puberty. Helped by the care and empathy of the home’s housekeeper, Madame Guérin, and Julie, her daughter, Victor learns to perform several domestic tasks but manages to speak only a few words.

 His situation is a mystery. Caregivers marvel at how he had been able to survive alone in the woods for several years. They wonder if he ran away from an abusive home, or if he was deliberately abandoned because of his disability. A crisis emerges when a woman appears claiming to be his relative. Itard eventually abandons the effort to educate Victor, but he is allowed to continue living with the Guérins.

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My Borrowed Face

Nigliazzo, Stacy

Last Updated: Jun-06-2022
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poem

Summary:

"My Borrowed Face," Stacy Nigliazzo's third full-length poetry collection, contains 55 poems, presented as a continuous flow without division into sections. Once again, Nigliazzo's poems are spare, often only phrases or words scattered on the white page, a form that leads the reader's eye from one image to the next. (For a brief discussion of how this poet uses white space, see the annotation of her second collection, “Sky the Oar” on this database.)  The poems in this collection were written during the Covid pandemic; they speak of the toll the virus has taken and continues to take not only on patients but, in these poems, on the caregivers--specifically the poet.  Nigliazzo, an emergency room nurse who has worked through five pandemic surges, is the perfect narrator to take us along on her rounds.

The book's early poems look back before the pandemic ("5920 Days Pre-Pandemic," p. 11) and then they come closer ("30 Days Pre-Pandemic," p. 12), until they begin to chart, with stark imagery, the beginning and the continuation of the pandemic.  We walk with the poet / nurse as she ticks off the days from "First Sunday on the Ward, Pandemic," p. 15, through "575 Days Out," p. 41. 

The 16 poems that close the book are a rest, in a sense, from the pandemic.  These poems are individual reflections, like quick photographs, that capture a variety of observations both personal and professional. "Self-Portrait as the Pink Moon," p. 42, and "Blue Book," p. 43, hark back first to Nigliazzo's mother, pregnant with the poet, then to her mother's death.  In a way, circling this collection back to the beginning, birth and death, the never ending turning.

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Urge: Our History of Addiction, by Carl Erik Fisher, a psychiatrist, is really two books in one.  It is a comprehensive history of addiction from ancient times to the present day.  It is also a memoir of the author’s own struggle with addiction and an attempt “to understand how I went from being a newly minted physician in a psychiatry residency program…to a psychiatric patient” (p.ix).  

Fisher has grown up with two alcoholic parents.  Even as his mother’s drinking “suppresses her blood counts and causes her to miss the chemo sessions I have worked so hard to arrange” (p. 294), she does not stop.  Fisher’s own first drink, in high school, is a revelation.  He blows his interview for his first-choice college when he shows up late and hung over. His intelligence enables him to get by, but eventually the problem catches up with him as he begins to use Adderall and marijuana to counteract the effects of alcohol.  After sleeping through and missing his residency orientation, he is under scrutiny.  Finally, he has a drug-induced manic episode that results in his being tasered by the police, and he is forced into treatment.    

In the historical sequences of the book, we discover that one of the oldest known examples of addiction is found as far back as the Rig Veda (1000 BC).  From there we move through time, learning how Native American populations were devastated by alcohol, how Alcoholics Anonymous achieved prominence, and about the multiple challenges that persist to the present day. 

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Five years into writing about her mother’s slow decline from a respiratory illness, Joanne Jacobson was diagnosed with a rare, life-threatening blood disease. That discovery dissolved the illusion that she and her mother had separate fates. “How could I continue writing about my mother as though I were observing her from outside the circle of Illness?” Jacobson asks (27). She can’t. And Every Last Breath becomes, as its subtitle discloses, “A Memoir of Two Illnesses.” Doubling its concern, Jacobson’s memoir in essays becomes a richer, more urgent, and ironic revision of her original project.  

With writerly attentiveness, perceptive intelligence, and some impatience, the four opening essays witness the negotiations that Florence Jacobson makes with her body, her environment, and her psyche. From a distanced perspective, Jacobson wonders at her mother’s courage and stubborn animal will to go on. Her mother’s slow pace and reluctance to let go—of her possessions, her habits, her life—initially frustrate and puzzle Jacobson. She even expresses impatience with the constant sound of her mother’s oxygen pump filling the apartment, the inconvenient bulk of the oxygen canister, the tangles of tubing connecting the machine with her mother’s nostrils. 

 As Jacobson’s diagnosis closes the distance she perceived between herself and her mother, it ignites the memoir’s transformative insight. It’s first articulated at the end of the essay titled “Mirror Writing” and it sustains the rest of the memoir. Realizing that her mother might outlive her, Jacobson writes: “. . . I can no longer pretend that the ragged approach of death is likely to be smoothed by nature’s grace, or by the natural order. So long as I believed I was writing about my mother, I was able to hold mortality at a distance . . . Now in the mirror of my mother’s aging face I see myself” (29). In “Dead Reckoning,” when Jacobson learns that her blood is starved for oxygen, she hears her “own lungs fall into the thrumming motor’s pulse” of her mother’s respirator. Revising her response to the technology, she writes that it is “the sound of death being pushed mechanically away that is audible to me now—steadily asserting its nearness . . .” (63-4). Jacobson’s descriptions of her hospitalizations and treatments (“Written in Blood,” “If My Disease Were an Animal”) take her on solo flights toward her new understanding of herself and the “call to the imagination” that her experience issues (59). Jacobson’s elegant and vulnerable rendering of her efforts to survive pain, uncertainty, and terrifying treatments register her own courage and will to go on.  

The final essays bring the shared destinies of daughter and mother together. Jacobson thinks of them as “invisibly entwined, cellular,” as she recalls that mothers’ bodies can absorb their fetuses’ cells (88). In “Book of Names,” Jacobson’s closing essay, she and her mother read out the names in Florence’s heavily edited address book, tracking the alterations in the circumstances of those whose lives she’s shared. It invokes the lists in Genesis. Begotten. Then gone.

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The End of Days

MacLaverty, Bernard

Last Updated: Feb-28-2022
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Autumn in Vienna, 1918. Menace circulated in the air itself and fear was rampant as a global pandemic and a World War raged. Egon, an artist, and his wife Edi, six months pregnant, had enough money to live on but hardly any opportunities to spend it. Shortages of coal for heat and flour for bread were continuous. Edi has suddenly become very ill - trouble breathing, loss of appetite, exhaustion, fever, and explosive coughing that produces blood. It is the Spanish flu and pneumonia.

Egon devotedly cares for his sick wife despite her warning, "You will get it from me" (p111). Soon she is unresponsive. As Egon listens for a heartbeat with his ear against Edi's motionless chest, he can only auscultate the distant, faint beat of his unborn child's heart that is quickly silent. He tragically describes Edi's corpse: "Her body being both cradle and coffin, within a minute" (p128). Egon feels compelled to make multiple sketches of his dead wife.

Before long, Egon experiences harsh bouts of coughing, fever, and chills. He becomes remorseful about the drawings he made of Edi and burns them in the kitchen stove. Egon gazes at the fire, knowing he too will die shortly but aware that he will be survived by all his other artwork.

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: History

Summary:

In a 1976 Archives of Neurology essay, the neurologist Robert Katzman successfully argued for relabeling “senility” as “Alzheimer’s disease.” He urged rejecting various forms of dementia and senility as common consequences of aging, and accepting them as a disease requiring all the attention any other important disease deserves. Now medicine and society had a problem—"The Problem of Dementia,” the famed physician Lewis Thomas called it in a 1981 essay published by the popular magazine Discover, and he noted that, suddenly, “a disease of the century” had arisen (p. 3).

Forty years on, Jason Karlawish thinks there is still a problem, but in keeping with Katzman’s call, he refers to “The Problem with Alzheimer’s.” Based on the history he covers and the experiences he shares in this book, nothing of much significance has occurred since “The Problem of Dementia” became the “The Problem of Alzheimer’s.”

Karlawish is a physician who cares for people with Alzheimer’s and a researcher delving into “issues at the intersections of care, ethics, and policy” (p. 5).  He draws on his experiences in this book, which he describes as “the story of how once upon a time, Alzheimer’s disease was a rare disease, and then it became common, and then it turned into a crisis.” Karlawish wants to answer why during the time between Thomas’ essay and the year 2010, “nothing really changed,” and how that could be the case in “the richest and most powerful nation.” (p. 6) He tells this story in four parts.

The first part concentrates on efforts clinicians and researchers were making following Thomas’ call to distinguish Alzheimer’s disease from normal aging, other dementia types (e.g., frontotemporal, Lewy body), and precursor syndromes (e.g., minimal cognitive impairment). They were looking for definitive clinical patterns, imaging studies, diagnostic tests, and pathologic markers for the disease. 

In the second part, Karlawish goes back in time to when Alois Alzheimer first found what are known today as “plaques” in the brain of a patient who had an early onset of severe, progressive dementia. He traces the attention this finding drew to eventual advances in imaging and biochemistry aimed at diagnosis. Karlawish also covers how a cascade of events over the decades following Alois Alzheimer’s finding disrupted the pursuit of a pathophysiological basis for dementia. These events included the rise and dominance of Freudian psychology; followed by two world wars; the cold war; the overshadowing of AIDS; Medicare political and funding constraints; tussles among patient advocacy groups; loss of asylums where care and research had coexisted; clinical failure of the first drug; and the continued debate over whether dementia is a consequence of aging or is a disease. 

Karlawish moves on in the third and fourth parts to cover what “we will have to learn to live with the disease so as to improve the lives of persons...to provide the care they need to live well at home...and repair the broken system” (p. 171). Success in his view requires integrated biological, psychological, and social components. He reports the progress on each of these three fronts: some failed approaches continue to fail (such as drugs targeting amyloid); some psychological interventions show promise (though at times causing moral tension); some of the social configurations engineered for Alzheimer’s patients, families, caregivers, and society have produced triumphs and some disasters. He has much to say about why and how this search must go on, but with some much-needed course corrections. 

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How To Be Depressed

Scialabba, George

Last Updated: Nov-28-2021
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

How To Be Depressed  is a book with a most unusual structure.  It is introduced by an essay entitled “Intake” that was previously published in a literary magazine.  The bulk of the book, “Documentia,” is taken up by an edited selection of the author’s psychiatric records from 1969 to 2016. It is rounded out by an interview with the author and by his “Tips for the Depressed.”   

Author George Scialabba ascribes his “exceptionally flimsy…shock absorbers” to his “constantly worried” parents (p.3).  While studying at Harvard he becomes involved with a strict religious organization. After leaving that group he undergoes a crisis of faith and his first episode of depression. Paralyzed by self-doubt, he drops out of graduate school and begins a cycle of clerical jobs that are beneath his intellectual capability. After many years he gradually wins distinction as a freelance essayist.  However, due to his incapacitating symptoms he never has a steady writing job and has difficulty attaining financial security.  

In his introduction, Scialabba tells us that “the pain of a severe clinical depression is the worst thing in the world.  To escape it, I would do anything” (p.1).  As attested to by the notes of his well-meaning psychiatrists and psychotherapists, he has diligently applied himself to a wide variety of treatments.  Sadly, if anything he gets worse over time, and eventually requires electroconvulsive therapy. 

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Annotated by:
Field, Steven

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Most of us are aware that the discipline of Palliative Care, with its focus on excellent pain management, other comfort measures, and psychosocial and spiritual counseling, has made a dramatic difference in the way patients are treated near or at the end of life.   However, for most of us, knowledge of Palliative Care is usually limited to how it functions in so-called “first world” countries.  What is Palliative Care like in areas around the world that have less-effective systems of health care delivery? 

Lucy Bruell’s documentary, Oli Otya:  Life and Loss in Rural Uganda, aims to tell this story.  Bruell, an award-winning documentarian (and coincidentally—and full disclosure—the Editor-in-Chief of the NYU Literature, Arts, and Medicine Database), follows a husband-and-wife team, an internist and a palliative care specialist, who travel each year to Uganda to volunteer with a small palliative care service based in a rural hospital.  Along with the team nurse, nursing assistant, and spiritual counselor, and a medical student who has accompanied them for this trip, they see patients in the hospital, the clinic, and most of the time, in the patients’ homes, often covering many miles in a day in this rural area of the country. 

It is the stories of these patients that constitute the heart of the film.  A woman who has been catastrophically burned in a revenge crime, a man with metastatic cancer who can no longer walk, a woman with end-stage rheumatic heart disease who insists on gifting the team with a live chicken for their work, a young man with a progressive neurodegenerative disease whose mother ascribes his behavior to demons—we meet these and other patients as the team makes its rounds, interacts with villagers and herbalists, and fights to overcome shortages of critical medicines.

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Practice

Berlin, Richard

Last Updated: Oct-26-2021
Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Practice is Richard Berlin’s third book of poetry (two of which are chapbooks) in addition to two prose books. It contains 64 poems and is fronted by an essay, “Why Doctors Need Poetry”. A few pages of notes at the end helpfully explain the context for 15 of the poems. As Dr. Berlin explains at the beginning of his opening essay: “Most of the poems in this volume first appeared in my column, ‘Poetry of the Times,’ a feature of Psychiatric Times”, which, at the time of publication of this volume he had been writing for 16 years. This—and many more poems in other journals, anthologies, and books— all from a man who began writing poetry in “mid-life”. Evident in the poems in this collection is a person experiencing much more than medical/psychiatric practice, but a full cornucopia of life: his love of art, music, food, nature, and the people he shares this bounty with. The collection, presented in three sections, weaves through all of these rich encounters, with only the final section, the shortest of the three, having more of a focus on family, friends and late of the year poems.

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