Showing 1 - 10 of 881 annotations tagged with the keyword "Caregivers"

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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Queen of the Sugarhouse

Studer, Constance

Last Updated: Sep-14-2021
Annotated by:
Davis, Cortney

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

Constance Studer's engaging "Queen of the Sugarhouse" contains nine short stories ranging in length from 9 to 21 pages, each story complete in itself.  Her nursing expertise is evident in several stories, including "Mercy" (page 3), "Shift" (page 77), "The Isolation Room" (page 95), "Testament" (page 112), "Special Needs" (page 122), and the title story, "Queen of the Sugarhouse" (page 138). 

While many of the stories specifically revolve around medicine or nursing, others examine a variety of issues, often with healthcare peripherally involved. 

In "Shelter" (page 21), a homeless vet who served in the Gulf War struggles with PTSD, the difficulty of obtaining permanent disability, the inability to find work or a suitable living space, and his quest to find treatment for his many physical problems after chemical exposure during Desert Storm.  He sees a different doctor at each appointment and no one truly helps him. "Finding today's meal or bed or beer takes all my energy, leaving me nothing left over for thinking about next week.  I am a veteran and can no longer vote because I have no home" (page 27).  Studer takes us into this man's life and struggles with clarity and empathy.


"Think Beauty" (page 37) questions what makes a woman beautiful (or believe she is beautiful) against a back story examining friendship and all that entails.  "This Middle Kingdom" (page 58) tells a story that encompasses both the heroics of a ski team that saves skiers in distress and how difficult it can be to feel compassion for those who end up in trouble because they flaunt the rules or advice of the experts--a theme quite relevant for our times. 

The book's opening story, "Mercy" (page 3) explores a nurse's various reactions after she makes an error while dispensing medication. As in every story in the collection, multiple themes weave in and out, driven by a character's decision or dilemma.  In "Mercy," we see how medical personnel can truly care for and worry about their patients; how even a small error may cause a nurse deep distress, both for her patient and for her future; how the nursing shortage leads to burnout; and how "real life" continues on in the background, in this case, a passionate love affair that leads both to marriage and to grief.  "Grief is a train that doesn't run on anyone else's schedule" (page 15).

"Shift" (page 76) tells of a physician who is devoted to his work and his patients in the ER ("His white coat flaps, stethoscope bounces as the doctor runs, its weight a comfort, like a rosary for a priest" page 76) while his wife feels neglected.  The story moves between the chaos of the ER and the story of his marriage, a love that began when the doctor was in medical school.  After his wife leaves him, the doctor sleeps with the lights on, hoping she will return.  But whenever he closes his eyes, he only sees scenes from the ER.  The story ends with words the doctor has said so often to a patient: "Please sir, lie still.  I'm going to numb you now.  Hang on, man.  Soon the pain will be gone" (page 93). 

"The Isolation Room" (page 94) follows a woman, a writer, who has been, she believes, placed unnecessarily and mistakenly in a psychiatric ward.  As we read, we wonder if this woman is truly afflicted with a mental disorder or if she is simply extremely imaginative, perhaps betrayed by her husband who arranged for her admission. The main character is likeable, often seemingly sensible, perhaps incredibly but differently talented: "Maybe to be out of her mind meant she'd finally make the leap from logical to intuitive, into her true skin, a room all her own ... a writer, that teller of lies, pursuer of truth by means other than logical, that follower of breadcrumbs through the scary forest wherever they lead?" (page 97).


"Testament" (page 112) follows a student nurse in her first month of training and touches on the care of difficult patients, their various religious beliefs, and how healthcare providers' families are not immune to illness. "Special Needs" (page 121) follows Maria, a waitress with an unexpected pregnancy and wheelchair confined brother. The title story, "Queen of the Sugarhouse" (page 137) is a poignant examination of breast cancer; the terrible trial of chemo and radiation; the complex relationship between the suffering mother and her daughter, a nurse; and how life changes when the drama of uneasy but genuine love and relationship ends.  "I think I hear Mama's voice, then
realize it's only the sound of water over rocks.  Tears are this river carrying me forward" (page 153).


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Freud on My Couch

Berlin, Richard

Last Updated: Aug-11-2021
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Richard Berlin is the author of two poetry chapbooks and three full-length poetry collections.  "Freud on My Couch," Berlin's fourth full-length collection, consists of 46 poems divided into six sections, and a "Notes" section at the end.  As in his previous collections, Berlin writes as a physician, husband, father, friend, lover of music--and as a man who understands that he and his patients share a common and fragile humanity.

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Secret Wounds

Berlin, Richard

Last Updated: Aug-06-2021
Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

In Secret Wounds, his second full length collection of poetry, psychiatrist Richard Berlin continues his exploration of the inner world of medicine with a sequence of 73 poems that flow seamlessly, uninterrupted by grouping into topics or sections. In the first poem, “Lay Down Sally,” the author attends a man dying on dialysis, and concludes with “A nurse hangs the morphine. / I write my blue notes.” In the last, “The Last Concert of Summer,” he reflects on his long experience with the sick and suffering, ending the poem with, “I place a stethoscope in my ears and listen / to the heart when I’ve run out of things to say.” In between, the poems reflect varied incidents, topics, conflicts, and wounds, as they occur from medical education (“Teaching Rounds,” “Touch,” “On Call, 3 AM”) through a life in medical practice (“Rage,” “The Scientists,” “How a Psychiatrist Parties”) to something like enlightenment (“Note to Pablo Neruda,” “A Psychiatrist’s Guitar,” “End of Summer”).

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The Empathy Exams

Jamison, Leslie

Last Updated: Aug-02-2021
Annotated by:
Zander, Devon

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

Leslie Jamison starts The Empathy Exams with a quote from The Self-Tormentor by Terence, first in Latin, then in English: “I am human: nothing human is alien to me.”  In beginning this way, she sets up the book to explore the human condition and what it means to relate to one another with caring despite the interpersonal complications that can often arise. Through a series of nonfiction essays (some initially published elsewhere) she explores how we express our feelings and process those of others. To do this, Jamison uses a number of different lenses, large and small, including ultramarathons, immigration, incarceration, a Morgellons disease conference, and more.  

The book takes its name from the first essay in which Jamison juxtaposes her experience as a standardized patient for students in medical school with being an actual patient. She specifically explores the ways in which empathy is created/manufactured and extended in medicine, both from medical professionals and loved ones.

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The Father

Zeller, Florian

Last Updated: Apr-26-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The basic plot of The Father mirrors the all-too-common trajectory people with dementia follow: first they deny any problems; then they progressively need more in-home assistance; and then they require institutionalization. This scenario, however, gets obscured when watching the film’s main character—the father—wrestle with quotidian activities and familiar faces. The viewers wrestle with him, and become just as confused and rattled. Florian Zeller, the screenwriter and director, admits he wants viewers feeling what people with dementia feel. He succeeds in the movie as he succeeded in the Broadway play version preceding it.

The father, Anthony, lived in his London flat with help from hired caregivers and his daughter, Anne, who lived nearby. After Anthony banished several caregivers on grounds they were unnecessary, Anne moves him into her flat, and when he’s too much for her there, she moves him to a nursing home. We’re never quite sure, though. Zeller makes the two flats and the nursing home look almost identical. He changes Anne’s story at different times: she’s still married after ten years; she’s been divorced for five years; she’s relocating to Paris with a lover; she was never relocating to Paris; she relocated to Paris. Anne appears as a different person on occasion and the husband she may or may never had appears as different people. Zeller overlays these confusing surroundings and events by jumping forward and backward in time, and repeating some scenes with slight variations. Eventually, Anthony says, “strange things are going on around us.” Viewers will feel the same, and that’s the point.

The movie ends as Anthony awakes in his nursing home room. Just as we are lured into thinking we have returned to the common dementia trajectory at its end, we see his nurse is the person who had appeared as Anne before, and his room looks like the bedrooms in both his own and Anne’s flats. We wonder.

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Born to Be

Cypriano, Tania

Last Updated: Feb-26-2021
Annotated by:
Glass, Guy

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Born to Be is a documentary about the trailblazing work being done at the Mount Sinai Center for Transgender Medicine and Surgery.   

The film’s central figure is Jess Ting, a plastic surgeon who studied music at Juilliard before making a career switch to medicine.   Scenes of him with patients are interspersed with domestic clips where he is at home with his children and playing the double bass.  Just a few years ago Ting had never even performed a single gender-affirming surgery.  He is the first to admit that he did not expect his career to take this turn: “Essentially, they just asked everyone else, and everyone said no except for me.  Everyone thought I was nuts.”  Be that as it may, Ting appears to have found his calling.  In a short time, he has performed well over a thousand gender-affirming surgeries, pioneered new procedures, and helped to start a fellowship training program.  

The stories of several of the Center’s patients are interwoven with that of Dr. Ting.  One client, Cashmere, is a retired sex worker.  Years of botched silicone injections have left her face chronically swollen.   Now in her 50’s, she hopes to have the effects reversed, and to finally undergo the vaginoplasty she has been dreaming of her entire life.  Another patient, Devin, 22, goes through a transition during the course of the film, renaming herself Garnet.  Not withstanding strong family support, years of bullying in school have taken their toll as she struggles with depression. 

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