Showing 1 - 10 of 864 annotations tagged with the keyword "Caregivers"

Mercy

Montgomery, Judith

Last Updated: Mar-27-2020
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

"Mercy," winner of the Wolf Ridge Press Narrative / Poetic Medicine Prize, contains nineteen powerful poems--poems that provide an intimate look into the author's role as caregiver to her husband who is living with, and being treated for, liposarcoma.  But the poems in this small volume are not just about husband and wife.  Cancer becomes a third character, one who is often addressed as a presence lingering in the same house, sleeping in the same bed, never absent from every moment of struggle or from any moments of joy.  In the opening poem, "Cozy" (page 1), the couple has "escaped" to a remote rented cabin.  They slip "from love-rumpled featherbed and sheets" feeling "safe" within the sturdy cabin walls that "keep out driving rain or freeze."  For those hours, nothing can spoil their happiness, "even Cancer, who squats on our stoop, / flipping his gold coin in lazy arcs."  At the close of "Cozy," as the couple drives home from their respite, Cancer rides with them, sitting between them "as he hums and nods / pleasantly--first to you, then to me, // one hand lightly resting on each near thigh."  The author weaves this threatening image of Cancer as an ever-present entity throughout the poems that follow.

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Annotated by:
Galbo, Sebastian

Primary Category: Literature / Nonfiction — Secondary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In Death is But a Dream, Christopher Kerr, MD, PhD, the Chief Executive Officer and Chief Medical Officer of Hospice & Palliative Care Buffalo, shares his patients’ end-of-life dreams and visions. The content and intensity of these dreams vary, but often center on patients’ transient meetings with predeceased loved ones, offering a deeply spiritual sense of peace during periods of physical suffering. 

Using patient interviews, Kerr’s book does not fetishize dream events as ghostly commotions or in terms of pseudo-mysticism, or insist on using a religious framework for their interpretation, explaining rather that bearing witness to and legitimizing end-of-life dream experiences constitute a new ethical imperative in the practice of palliative care: “A true holistic approach to patient care must also honor and facilitate patients’ subjective experiences and allow them to transform the dying process from a story of mere physical decline to one of spiritual ascension” (Kerr 28). Case after case, his research documents that because end-of-life dreams provide patients with a singular emotional and psychological comfort that no palliative medication can simulate, hospice professionals need to validate patient dreams by listening carefully and compassionately. 

With this in mind, end-of-life dreams serve as a kind of counter-narrative to dominant cultural understandings and representations of human experiences in hospice, specifically stereotypes of terminally ill individuals as being incapable of meaningful communication, creativity, and understanding. Kerr’s patients’ narratives reveal that end-of-life dreams and visions are not trauma-inducing experiences or instances of religious prophecy, but “help reframe dying in a way that is not about last words and lost love but about strengthened selves and unbreakable bonds across lives” (142). 

Death is But a Dream 
upends medical research, or certain “limitations of science,” that oversimplifies end-of-life dreams by attributing them to neurological deterioration, oxygen deprivation, and the side effects of pain management medication (11). The general lack of rigorous, serious-minded research in end-of-life dream experiences is inseparable, in part, from institutionalized medicine’s “inability to see dying as anything but a failure” which has produced a healthcare system that “reflects a limited view of the totality of the dying experience” (7). The patient accounts that Kerr documents, however, reveal an undeniable dimension of human experience at life’s end whose complexities may be well beyond the reaches of full scientific understanding. End-of-life dreams seem to be part of an elaborate system of compensation (to borrow a term used by Siddhartha Mukherjee), as the mind works overtime to activate and animate certain memories to diminish the physical realities of dying. “There is an adaptation—substantive, spiritual yet cognitively meaningful,” writes Kerr, “a mechanism through which the patient can emerge from the dying process with a positive psychological change” (69). Indeed, the mystery of end-of-life dreams—their visions of loved ones; of seeking forgiveness, healing, and understanding within weeks, sometimes days, of one’s death; of comforting apparitions and visitations—points to a miraculous capacity within the human heart that eases the life-to-death transition.

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Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.  

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Annotated by:
Field, Steven

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Anthony Marra’s debut novel (published in 2013) is set in Chechnya, the rebellious Caucasus republic that broke away from Russia in 1994, was in short order mired in two wars thereafter, and ultimately lost its independence and was re-incorporated into Russia as a semi-autonomous “federal subject” state.  Marra does not ease us into his story, but propels us headlong into it; it is 2004, and eight-year-old Havaa awakens to find that her father Dokka, suspected of aiding Chechen rebels, has been taken away by Russian troops, who have also burned her house to the ground.  She is alive only because Akhmed, her neighbor and her father’s friend, has spirited her out of her house in the middle of the night and hidden her in his.  Akhmed takes it upon himself to protect Havaa; he knows that the soldiers will be looking for her, because even though the official wars are over, Chechnya remains in the midst of a brutal battle for control, and the policy of the state is to “disappear” not only those it perceives as its enemies, but also their family members.  

Akhmed manages to get Havaa to the abandoned local hospital, where he believes she will be safe.  The hospital is staffed only by a smart, tough, and competent surgeon named Sonja, assisted by a nurse.  Sonja is an ethnic Russian from the area who trained in London and then returned to her homeland.  She agrees to shelter Havaa on the condition that Akhmed, who trained as a doctor but is painfully aware of his inadequacies in that profession (he wanted to be an artist), stay on also as her assistant surgeon.  Soldiers and civilians on both sides arrive in need of care in a hospital barely functioning, with little in the way of staff or supplies. 

Sonja meanwhile is searching for her sister who has disappeared into the chaos of the Chechen wars; she believes that Natasha is alive, but hasn’t heard of her, or from her, in years (we will, in the course of the novel, hear Natasha’s story and learn of another side of the underbelly of this war).  She comes to believe that Akhmed may hold a key to Natasha’s whereabouts, and Sonja of course holds the key to whatever measure of safety exists for Havaa—and thus for Akhmed as well.  Other locals, a local Chechen historian, his turncoat son, and various governmental and non-governmental functionaries round out the cast in the novel.   Akhmed must negotiate in a world where anyone could be an informer, and one person clearly is; where the price for falling into the wrong hands could be death or worse; where federal troops and rebels vie to outdo each other in brutality; and where the rest of the population spends every waking minute simply trying to survive in a lawless society and a landscape gutted by ongoing strife.   When the various narrative arcs ultimately link up the ending is a powerful one.




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Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 46 poems in this volume (the author's second full-length collection), divided into four sections.  The author's first book, "The Ninety-Third Name of God" , introduced us to her family and especially to her diagnosis--inflammatory breast cancer--the disease discovered in 2004 during her pregnancy, the disease that claimed that claimed her life in August, 2018, when she was forty-nine-years old.  This second collection continues Silver's illness narrative, poems that might serve as a journal of her journey through treatment, anger, despair, determination, and faith.

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The Father

Zeller, Florian; Hampton, Christopher

Last Updated: Nov-19-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Plays — Secondary Category: Performing Arts / Theater

Genre: Play

Summary:

This annotation is based on a live performance presented by the Manhattan Theater Club at the Samuel J. Friedman Theater  in New York City that ran between April and June of 2016. The play was nominated for a 2016 Tony Award for best play, and Frank Langella won the 2016 Tony Award for best performance by an actor in a leading role in a play. In supporting roles were Kathryn Erbe, Brian Avers, Charles Borland, Hannah Cabell, and Kathleen McNenny.
 
The Father is the story of an older man with Alzheimer’s disease (André) and his progression through first living on his own, then living with his daughter (Anne), and finally living in a nursing home. Or, is it? It’s hard to tell, and that is the intention of the playwright, Florian Zeller, who told The Guardian (2015), “The Father is about an old man lost in the labyrinth of his mind.” The objective of the play is to bring audience members into the actual dementia experience so that rather than witnessing André’s disorientation they feel his disorientation.  

The director, Doug Hughes, creates the audience experience through an interplay among set designs, lighting effects, repeated scene sequences, and time loops as contexts for various symptom manifestations like memory loss, paranoia, anger, and lasciviousness. All the scenes take place in one room that serves at different times as André’s flat, Anne’s flat, and a nursing home room. The furnishings of the room change based on the supposed setting, but the walls are exactly the same for all of them. In different scenes, André is not always sure where he is, and neither is the audience.  

Early in the play, André hears Anne tell him she’s relocating from Paris to London with her lover, but she is present to him in most of the scenes thereafter and until the end of the play when he’s told by a nurse that Anne had moved to London some time ago. Had she really left Paris and was never actually there in all those other scenes? He wonders and so does the audience. In other scenes, the way characters from the past and present enter and exit distorts time for André, and so while audience members know the linear trajectory of the disease course, they can’t be sure of where they are in that course during a given scene. With the last scene taking place in André’s nursing home room with the same walls seen in his flat and Anne’s flat, the audience can’t be faulted for wondering whether all that came before was just one of André’s hallucinations.  

The play does not keep audience members in a perpetual state of confusion and despondency. Farcical elements are peppered throughout that produce occasional laughs, such as when Anne contests André’s account of a previous conversation, he suggests it’s she who has the memory problem: “You’ve forgotten. Listen, Anne, I have a feeling you sometimes suffer from memory loss. You do, I’m telling you. It’s worrying me. Haven’t you noticed?”

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Primary Category: Literature / Nonfiction — Secondary Category: Literature /

Genre: Treatise

Summary:

Louise Aronson, a geriatrician, argues that we should create Elderhood as the third era of human aging, joining the earlier Childhood and Adulthood. This new concept will allow us to re-evaluate the richness of this later time, its challenges as body systems decline, and, of course, the choices of managing death. This important and valuable book is a polemic against modern medicine’s limits, its reductive focus, and structural violence against both patients and physicians. She argues for a wider vision of care that emphasizes well-being and health maintenance for not only elders but for every stage of life.   
          
Aronson argues that contemporary society favors youth and values of action, speed, and ambition, while it ignores—even dislikes—aging, older people, and the elderly. She says ageism is more powerful than sexism or racism—as bad as those are. Medical schools ignore the elderly, focusing on younger patients, especially men, and medical students perceive geriatrics as boring, sad, and poorly paid. Primary care, in general, seems routine and dull. By contrast, medical treatments, especially high-tech, are exciting and lucrative. In medical schools a “hidden curriculum” focuses on pathophysiology, organ systems, and drugs, ignoring patients’ variability as well as their suffering and pathos. Further, business and industrial models make “healthcare” a commodity, and nowadays “doctors treat computers, not people” (p. 237). Aging has become “medicalized” as a disease. Medicine fights death as an enemy, often with futile treatment that may extend a dying process.
        
Instead, Aronson says we need to bring back the human element, putting care of people at the center, not science. She calls for a new paradigm with ten assumptions (p. 378). Number 2 reads: “Health matters more to both individuals and society than medicine.” Number 9 claims, “As an institution, medicine should prioritize the interests of the people over its own.”  
      
Many practical changes would follow, from redesigned “child-proof” drug containers to buildings and public spaces that are more congenial to older people—and, in fact, to everyone else. We should change our attitudes about old age. For example, we might use the adjective “silver” for a medical facility that is friendly to and usable by older people. Changing our attitudes about aging can help all of us imagine more positive futures for each one of us and for all of our society.

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The Genius of Marian

Fitch, Anna; White, Banker

Last Updated: Sep-16-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Pamela Steele White was diagnosed with early onset Alzheimer’s disease at the age of sixty-one. A year later, in 2009, as her disease progression was evident, her son Banker, a documentary filmmaker, turned his camera on, and he kept it on until the autumn of 2012. His mother lived another four years.  

The film begins showing the cruelest of ironies at work. Pam looks up at the camera, introduces herself, and says she’s working on a project she calls, “The Genius of Marian.” Marian is her late mother, who was an accomplished painter. She had Alzheimer’s disease before she died in 2001. Pam’s purpose with her project was to keep her mother alive “by at least not forgetting who she was.” Alas, she confesses she hadn’t been working on the project because she had forgot about it until just recently. 

The film covers Pam’s plight over the next three years in various settings that show her mental and physical capabilities at the time. She answers questions family members and her doctor pose; we see her on family outings, and at moments when she’s captured alone lost in her thoughts, and lost in her house. We mostly see her struggle with memories and words, and with physical coordination (e.g., putting on a jacket). Some conversations reveal that Pam exhibited aggression and agitation, but we never see any of these episodes, only some nonviolent defiance on occasion. 

Family members are also a focus, mostly in the form of interviews. Pam’s husband of 40 years, Ed, is interviewed several times throughout the span of the film. As we see Pam’s capabilities diminish, we see Ed’s burden compound and his responses gather pathos. Pam’s only daughter and her younger son are interviewed and shown with their mother to a lesser degree. Some friends of many years are interviewed once or twice to round out the perspectives on Pam’s course over the time of the filming. 
 

The film is augmented with family movies capturing scenes of Pam and her brother with their parents, of Pam and Ed with their children, and of Pam and Ed with their children's children. These scenes are often spliced into the documentary footage to show similar outings at similar locations across the three generations.

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In Ladysitting, novelist and memoirist Lorene Carey writes candidly and reflectively about the year and a half she cared for her century-old, ferociously independent paternal grandmother. The experience became a critical moment for personal and familial discovery. Carey’s intensive caregiving began when Nana Jackson could not be discharged from the hospital to the house where, for decades, she had lived by herself. Growing up, Carey enjoyed enchanted weekends of indulgence in Nana’s sunlit suburban home in South Jersey, a respite from her family’s life in urban West Philadelphia. Partly in gratitude for those weekends, partly from a sense of duty, Carey made physical, emotional, and spiritual space for Nana in the home she shared with her husband, a minister, and their teenage daughter. Along with Carey’s own artistic, community, and professional commitments, she also maintained the property management business that her grandmother ran until her confinement. Carey’s decision to become Nana’s primary caregiver brought momentary satisfactions along with overwhelming frustrations.  

Carey’s narrative agilely transitions between present encounters with Nana Jackson and the past: her own past and her African- and Caribbean-American relations’. By doing so, Carey tries to make sense of the complicated woman in her care, herself, and relationships within her family. She discovered generations of mostly “free-people-of-color,” several financially and politically successful, whose ambitions confronted Reconstruction, the Jim Crow South, the migration north, and the “lynchings [that] made sure that every gain would be paid for in blood and money, if not by [her family], then by other black people, somewhere.” How might that history, Carey asks, help her understand her family’s generations of divorces (including her own), alcoholism, deceptions, estrangements, and the elusive efforts of one generation to build on the accomplishments of the others?   

It took Carey ten years to research and reflect on that question. And then to write, hoping “to clear away the rage, uncover the simple grief, stored in the muscles that seized up then and cannot remember how they were before, and to convince us both, Nana and myself, that she has left this plane. And to forgive.”  

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The Farewell

Wang, Lulu

Last Updated: Aug-19-2019
Annotated by:
Jiang, Joshua

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

In The Farewell, we follow Billi, a young Asian-American woman, as she takes an unplanned trip from New York to Changchun, China, to visit her grandmother—perhaps for the last time. Billi has just found out that her grandmother (Nai Nai) has lung cancer, stage IV. The doctor gives her three months to live. As troubling as such a diagnosis already is, the situation is further complicated by the family’s choice to lie about the truth of Nai Nai’s illness to her. Now, Billi’s family gathers to see Nai Nai under the pretense of a wedding, but the festivities can barely conceal a heartfelt and heart-wrenching struggle over familial responsibility, filial piety, and whether Nai Nai deserves to know.

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