Showing 1 - 10 of 850 annotations tagged with the keyword "Caregivers"

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Scar is a powerful, thoughtful, and moving book, part memoir about the author’s illness across some 30 years, part history of depression and its treatment and part essay to evoke cultural and personal values about sickness, suffering, health, and death. Cregan, a gifted stylist herself, draws on literature that deals with human suffering, mortality, and wisdom.  She frankly describes her sorrows and hopes, the death of her baby, her attempts to kill herself, and her survival today with many blessings.   
           
The title refers to a scar on her neck, a result of her effort to cut her throat with a piece of glass so that she would die. This attempt, in a hospital, reflects the depth of her illness and the failure of her caregivers to prevent it. Her book explores the complexity and variety of mental patients and the range of medical responses—some useful, some not—to  treat them. Writing as a survivor, she draws on her journal, hospital records, emails, interviews, and more; she is part journalist, detective, archivist, and forensic pathologist—as if doing an autopsy on the suicide she attempted.
 
Ch. 1
What Happened describes the birth and immediate death of her daughter Anna and her descent into depression and initial hospitalization.

Ch. 2
What Happened Next discusses mental hospitals and her perceptions of being a patient in one. A dramatic paragraph describes her cutting her throat (p. 51).

Ch. 3
How to Save a Life presents electroconvulsive therapy (ECT), from the jarring images of “One Flew Over the Cuckoo’s Nest” to her own experience of some 17 treatments; she reports that these helped in recovery.

Ch. 4
The Paradise of Bedlams gives a history of mental hospitals. She is hospitalized three months, “a prisoner,” in her term.

Ch. 5
Where Do the Dead Go? explores the dilemmas of the living as they mourn the deaths of people they love, including approaches from Judaism and Christianity. Mary has nightmares about her lost baby. She discusses Freud, Rilke, T. S. Eliot and others. She buries Anna’s ashes.

Ch. 6
Early Blues discusses modern attempts of science and the pharmaceutical industry to create drugs for mental illnesses, with influences from psychodynamic and biological concepts.

Ch. 7
The Promise of Prozac discusses that famous (notorious?) drug; she takes it on and off while working on her PhD, then other drugs as they became available.

Ch. 8
No Feeling Is Final sums up many themes.  She’s in her late 30s, remarried, and trying to conceive. After IVF, she’s pregnant. Baby Luke is born. She understands that the scar on her neck has an analogue with Odysseus’ scar on his leg: a symbol of survival through hard, even desperate times, for her a “double trauma: the loss of my child, the loss of myself”  (p. 243).  

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Annotated by:
Perkins, Sam

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

 In Strange Relation, Rachel Hadas, poet, teacher and classicist, recounts the years just short of a decade of her husband’s descent – retreat is the word she’d prefer – into dementia. Although no definitive diagnosis emerges for George’s “spooky condition,” frontotemporal dementia possibly with Alzheimer’s disease in the frontal lobe seems the most likely. By Hadas’s reckoning, George’s symptoms began when he was in his late fifties—relatively young for dementia. Diagnosing any form of early onset dementia is extremely difficult, especially if memory loss is not among the symptoms, as was the case with George. Hadas noticed the symptoms — his silences and growing remoteness— and ascribed them to her husband’s loss of interest in life and their marriage. She writes, “Slowly and insidiously your partner changes from the person you married into someone else.” 

The book opens in 2004, just before his diagnosis in 2005 at the age of 61. George Edwards was a successful and celebrated composer of symphonies, chamber works and art songs, as well as a professor of music at Columbia University. Through flash-backs, Hadas fills in a portrait of a happy, mutually supportive marriage of two engaged, successful artists, a life that slowly melted away as George’s disease tightened its grip. She ends with George in a long-term care residence in 2009, the year Strange Relation was published and two years before his death in 2011.  

The core of the book, intertwined with the story of George’s dementia, is Hadas’s account of the comfort she sought and gained from reading and writing prose and poetry. “This ordeal has eloquently reminded me of the sustaining power of literature,” she writes. “These gifts of the imagination,” gave her strength. “They are not sufficient, but they are damn well necessary.”

Over seven decades of reading have given Hadas a vast store of literary references to draw on. George is Mr. Dick from David Copperfield, mentally scattered, shuffling his papers; he is King Lear, losing clarity and dignity and consumed with anger and humiliation as he feels his abilities fade. Like Penelope awaiting Ulysses’ return, Hadas sees herself living with George as “neither wife nor widow,” her husband a physical presence but spiritually gone. When she reads James Merrill’s “Days of 1964,” she identifies with the poet who “has gone so long without loving that I hardly knew what I was thinking.” The poem speaks to her as it captures, “The thirst, the loneliness, the habituation to emotional deprivation that marked the way I was living.”

 A recurrent theme that many will relate to is the loneliness she feels caring for someone who, because of his condition, hardly speaks or expresses emotion. Robert Frost’s “Home Burial” reminds her how quickly friends will turn away from death and illness and “make their way back to life.” Sickness, says Flannery O’Connor, is a country “where there’s no company, where no one can follow.” She sees her life reflected in Philip Larkin’s wry poem about a couple’s estrangement, “Talking in Bed,” – the couple’s growing estrangement is “this unique distance from isolation.” Hadas finds the clarity and the company of these works a huge comfort.

There are moments of uplift, too. When her college-age son, Jonathan, and his friends propose to take George on a two-week getaway of very rustic living in Vermont, she reluctantly agrees, certain that disaster or injury will ensue. The reader is as relieved as Hadas is when all goes off without a hitch. 

A recurrent theme of the book is the importance of the language used to describe a disease and its treatment. Metaphors and similes, of course, are staples of medical caregiving – “they help us see freshly,” says Hadas; they help her step outside the moment and understand George, whom she describes as retreating into a “walled garden” or behind a “frosted window”; his disease is a bath in which he’s immersed and can never escape; it is a malignant fluid his brain is stewing in.

Equally, using the wrong metaphors and similes can cause pain and guilt. A neurologist tells Hadas that she’s feeling depressed because Hadas has moved into a “new house” and is still living out of boxes, still in transition. “Make yourself at home,” the doctor advises, “I don’t think you’ve completely moved in yet.” This only makes Hadas feel inadequate and guilty. “Let’s at least find the right kind of house,” she writes. Caring for a person with dementia, as she sees it, is not a house but a prison in which the family caregiver is the voluntary inmate, “responsible for the daily care of a warden who has mysteriously changed into a ward.” 

By the end of the memoir, George has declined to the point that Hadas can no longer care for him and has found him a residence, which raises a new host of concerns. He fails out of the first home and she finds another. She visits George regularly and experiences a new kind of tethered freedom. Her divided self, composed of the Drudge and the Poet, dusts off their apartment to reclaim it from the associations of George’s illness, hoping to rescue her memories of twenty years of happiness before his illness began to take him. “It became my home in a new and different way.”  

Each phase of her journey is accompanied by poems, twenty-nine in all, that Hadas wrote to understand herself, clarify her feelings, cope with the loss of George. Never was Robert Frost’s dictum regarding the ingredient of a successful poem— “No surprise for the writer, no surprise for the reader” —more pertinent. Along with her reading, Hadas’s poems lead her to insights that comforted and sometimes surprised her—and will do the same for the reader.   

The book ends with George’s birthday party in 2009 at the long-term care residence where he finally settled. He died shortly after the book was published in 2011.   




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Go Set A Watchman

Lee, Harper

Last Updated: Apr-25-2019
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Now 26 years old, Scout (Jeanne Louise) returns home to Maycomb, Alabama, where she encounters many changes. Her brother has died. Her heroic father, Atticus Finch, who defended the wrongly accused man in the earlier acclaimed novel (To Kill a Mockingbird) is still carrying on his legal practice and his role as a wise pillar of the community, despite his advancing age. He is approached to defend a black man who has killed a white man in a motor vehicle accident.

Scout renews contact with old friends, including Hank who still hopes that she will marry him. The old places spark memories told in 
deftly written flashbacks that beautifully evoke the atmosphere of a small southern town in the heat of summer. Some flashbacks– an imagined pregnancy following a chaste kiss and an escapade with falsies at a school dance-- are hilarious renditions of ‘tweenage’ angst, typical of any time or place.

But Scout is disgusted by the social spying, the rumors that easily build, and the latent racial hatred that lurks everywhere. The memories of her “color-blind” childhood make her confrontation with the cruel, racial tensions in the more recent time all the more upsetting. Even her beloved nanny, Calpurnia, is now alienated with distrust and repressed anger. The climax comes when she witnesses her father, as chair of a meeting, give the floor to a notorious racist. Scout confronts him and he launches into a long self-justifying and not entirely convincing defense of the need for free speech. The disquieting conclusion is ambiguous. 
 

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Esmé Weijun Wang is a novelist who has been diagnosed with Schizoaffective Disorder.  The Collected Schizophrenias is a book of personal essays that was the 2016 winner of the Graywolf Press Nonfiction Prize. 

A precocious young person on a track to success, Wang experiences a manic episode at Yale that leads to her first hospitalization.  After a second hospitalization, her college washes its hands of her.  Hitting roadblocks time and time again requires her to rebuild her life over and over.  This is not a conventional chronological autobiography but rather essays that provide different approaches to the author’s experience of mental illness.  The plural “schizophrenias” of the title encompasses the whole schizophrenic spectrum of disorders.  As Wang explains, her own diagnosis is “the fucked-up offspring of manic depression and schizophrenia” (p. 10).  

In an essay entitled “High-Functioning” we learn how the author, having been a fashion editor, knows how to pass for normal: “My makeup routine is minimal and consistent.  I can dress and daub when psychotic and when not psychotic.  I do it with zeal when manic.  If I’m depressed, I skip everything but the lipstick.  If I skip the lipstick, that means I haven’t even made it to the bathroom mirror” (p.44).  

Later, in “The Choice of Children,” volunteering at a camp for bipolar children makes Wang think about what it would be like to inflict her diagnosis on her own offspring.  In “Reality, On-Screen” she attempts to convey the sensation of decompensating to psychosis.  And in “Yale Will Not Save You” she considers the failure of universities to accommodate mentally ill students. 

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Summary:

In 2006, Emergency medicine trainee, Damon, and his wife, Trisha, have two boys, Thai (age 4) and Callum (age 2.5).  All is well in their lives until Callum begins vomiting for no apparent reason.  He is found to have medulloblastoma, an aggressive brain tumour, for which the only possible hope for a cure comes from surgery and six cycles of ever more arduous chemotherapy with stem cell recovery at Toronto’s Hospital for Sick Children. The little family moves to Toronto and commits to supporting Callum as best they can, ensuring that he is never alone even during his long weeks of reverse isolation. They also try to keep Thai nearby, involved and aware, with the help of a local school and grandparents. But Callum dies during the last cycle of treatment.  

Saddened, exhausted, and bereaved, Damon and Trisha go back to their home town and try to (re)construct their lives, slowly returning to studies and work. They find meaning in creating tangible and intangible memorials to their lost son, and they find purpose in the more difficult task of moving forward, never losing the pain of grief. They adopt a little girl. Damon knows that Callum is always with him and the experience of his illness and death has dramatically infused his work as a physician.

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Taking Care of Time

Davis, Cortney

Last Updated: Jan-02-2019
Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

In this volume by the esteemed nurse-poet/writer, Cortney Davis, are 43 previously published poems (some revised for this collection), assembled in 3 sections-- the middle section featuring her long poem, "Becoming the Patient," that recounts through 10 shorter poems her time "in the hospital."

The poems in the surrounding sections describe in beautiful and intimate detail her patients' lives and the call to and practice of nursing. Featured throughout are battles won and lost-- with disease, with the medical staff, and as the title-- taking care of time-- suggests, the finitude we all face. No matter the difficulties of hospital life-- whether as practitioner or patient-- its familiarity  provides grounding and comfort in these poems as, for example, heard through the speaker of "First Night at the Cheap Hotel" who tells us:

"Being here is like being sick in a hospital ward
without the lovely, muffling glove of illness.
In hospital, I would be drowsy, drugged into a calm
that accepts the metal door's clang,
the heavy footfall right outside my door.
All these, proof of life,
and there would be a nurse too, holding my wrist,
counting and nodding, only a silhouette in the dark" (p.67)

And if sometimes the experiences and images become too hard to bear, the skillful nurse-poet can, as Cortney Davis does in "On-Call: Splenectomy," "tame them on page” (p.52).

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The Big Sick

Showalter, Michael

Last Updated: Dec-03-2018
Annotated by:
Jiang, Joshua

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Kumail Nanjiani is a Pakistani-born American living and working in Chicago. In addition to driving for the ride-sharing company Uber, Kumail performs as a stand-up comic at a local club, hoping to be noticed and land a big break. During one of his shows, he meets a graduate student named Emily Gardner, and the two quickly develop an intimate relationship.  

Kumail hides his relationship from his family, because they insist that he only date Pakistani women. Privately, Kumail struggles not only with the cultural expectation of intra-ethnic marriage, but also with other aspects of his heritage, such as devotion to Islamic religious law. He chooses to maintain appearances out of love for his family and fear of disownment. Emily eventually discovers Kumail’s double life and in anger, ends their relationship.  

Kumail and Emily’s estrangement is interrupted when Emily is hospitalized with a mysterious illness. Emily initially resists Kumail’s presence, but her sickness worsens and she is placed in a medically-induced coma. Under these increasingly uncertain circumstances, Kumail partners with Beth and Terry—Emily’s parents—to navigate a confusing medical system and chart the best course of care for Emily. The three of them clash over their differing perspectives on care and their interpersonal relationships. As he waits with bated breath for Emily’s recovery, Kumail is forced to confront his values and decide whether his desire to please his family and his ongoing affection for Emily can coexist harmoniously.

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Comfort Measures Only

Campo, Rafael

Last Updated: Nov-26-2018
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Physician Rafael Campo's collection of new and selected poems is a lovely look back (selected poems are from 1994 to 2016) and an exciting look at thirty-one new poems that continue his trademark use of a variety of poetic forms (the title poem "Comfort Measures Only" is a Villanelle, pg 135) and the moving and personal examination of his interactions with patients.   This collection begins with Campo's excellent introductory essay, "Illness as Muse" (pgs 1-9).  

As the essay opens, an audience member tells Campo that his poems are "really depressing." Even Campo's spouse advises him to lighten things up, a counsel I hope the poet never heeds--for it is precisely Campo's unwavering examination of sorrow, regret, death, and despair that set his poems apart from poems that find "butterflies or snowflakes or flowers as more suitable." Campo responds: "Try as I might to take all of this concern to heart . . . I keep finding myself drawn to write about illness" (pg 1).


Campo recalls how singing and praying consoled his grandmother and seemed to lessen her physical ills: "No wonder I have come to believe in the power of the imagination if not to cure, then to heal" (pg 4).  On page five he notes "To write about illness, to heed this terrible muse, is to reject distancing and to embrace empathy, for which there is no reward or claim on greatness other than perhaps the perverse joy of recognizing oneself as being susceptible to the same foibles and neuroses as anyone."  Indeed it is this vulnerability--the ability to see physician and patient on the same plane, as equal players in a moment in time--that has become another hallmark of Campo's poetry.
Selected poems from previously published collections follow the essay: nine poems from "The Other Man Was Me" (1994); eight poems from "What the Body Told" (1997); nine poems from "Diva" (200); five poems from "Landscape with Human Figure" (2002); seven poems from "The Enemy" (2007); and twenty poems from "Alternative Medicine" (2013).  Of these collections, all but "Landscape with Human Figure" and "The Enemy" have been reviewed in the database.

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Three Identical Strangers

Wardle, Tim

Last Updated: Nov-08-2018
Annotated by:
Thomas, Shawn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The world is a big place – 7.4 billion people and counting. As much as we all enjoy the game of finding our doppelganger in a crowd, there probably isn’t anyone in the world who is exactly like us. With a genetic code of over 3 billion base pairs, of which there are innumerable permutations, we would be hard pressed to find a clone of ourselves even if the world had 7 trillion people. The exception is if you were born with an identical sibling. But then again, you would know if you had a twin. Wouldn’t you?

The documentary Three Identical Strangers tells the unbelievable story of Bobby Shafran, Eddy Galland, and David Kellman – three identical triplets who were separated at birth and serendipitously reunited at the age of 19. The film takes us through the circumstances of their reunion, highlighting the brothers’ instant rapport over their similarities and the ensuing fame resulting from the public fascination with their extraordinary story. It began as a euphoria-filled saga complete with talk show interviews, movie cameos, and even a successful restaurant which they called “Triplets”.

The honeymoon phase ended in horrific fashion once the parents of the respective siblings began asking questions as to why the brothers were separated in the first place. A journalist who had been investigating the triplets’ adoption agency, Louise Wise Services, helped to uncover the details of an elaborate study performed by a child psychiatrist named Dr. Peter Neubauer. In this study, each brother was placed into a home which had another adoptive sister, and specifically assigned to a family of lower, middle, and upper-class backgrounds. While the exact details of the study objective remain unknown, it appears that the study was trying to determine whether psychiatric illness was correlated more strongly with genetics or with developmental environment; this is referred to colloquially as a “nature vs. nurture” experiment.

The implications were earth-shattering. The brothers struggled to cope with the realization that they had been marionettes in some sort of sick experiment, with Dr. Neubauer pulling the strings the whole time. Even worse was the fact that there were possibly several more identical siblings with the same story who were deprived of their biological soul mate, all at the behest of Neubauer and his associates. In fact, other sets of identical siblings were eventually made aware of the experiment, and did have the chance to meet, albeit many years after their birth.

The triplets also learned that their biological mother had serious psychiatric problems – hence their inclusion in the study. All three brothers had behavioral difficulties as adolescents, and it was distressing to consider whether their issues may have been exacerbated by the separation anxiety they experienced upon being separated at birth. In particular, Eddy suffered from worsening episodes of bipolar disorder throughout his life. In 1995, at the age of 33, he committed suicide. He is notably absent for the duration of the documentary, with Bobby and David narrating much of the film. Today, they are still trying to uncover the particulars of Dr. Neubauer’s study, but the research records remain under seal at Yale University until 2066. They may never know the full extent of what was done to them and why.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This intelligent and compelling book invites us to evaluate the losses pertaining to “modern death” and to consider better ways—whether from the past or in the future—to care for the dying, their families, and all care-givers.   
            
Some chapters, such as “How Life (and Death) Were Prolonged,” are historical, describing changes in inoculations, living conditions, and medical care that extended the human life span but also changes in dying, now often prolonged by technology. Another chapter, “How We Learned Not to Resuscitate,” relates how CPR, initially lauded and popularized, is now widely understood as futile care, especially in older people. Warraich discusses various attempts to define death (brain-based, heart-based, American Bar Association, Harvard Criteria, Uniform Determination of Death Act, even NASA) and some of the issues that still remain. 
 

Other chapters are more physiological:  “How Cells Die” explains natural processes of cell death (necrosis, autophagy, and apoptosis). Most non-medical readers haven’t heard of these and perhaps some medical personnel as well. Unaware of them as regular and usual processes, we resolutely expect people to live some four-score and ten, perhaps even more. The next-to-last chapter, “When the Plug is Pulled” discusses “terminal sedation” (a legal dosage that eases pain but is not strictly speaking euthanasia or murder) and statutes that allow for assisted death and removal of life-sustaining machines. The Nancy Cruzan case and others illustrate many difficulties. (Cruzan was in a persistent vegetative state and supported by a feeding tube. A 1990 U.S. Supreme Court 5-4 decision allowed the removal of the tube.) Warraich argues further for “patients’ right to demand and acquire the means to end their suffering with the aid of a physician” (p. 263).              

Lack of resolution of these difficulties leads to problems for families of the dying and all medical personnel attending them, especially in ICU situations. Living wills are often of no help and “the end of life has become a battleground” (p. 211).
He argues that surrogate roles for decisions at the end of a life often do not represent what the patient actually wanted because the surrogate's values may be different from the patient's and family members may not reach agreement on decisions. He concludes, “All in all, overinvolved family and underinvolved doctors unsurprisingly make for a particularly caustic combo” (p.214).                      

In “When Death Transcends” we read that spiritual and religious matters are often ignored in medical settings. Such resources, however, “may be the only means that patients have of finding comfort” (p. 148). Warraich surveys various religions, including his own, Islam. This is one of the longest chapters in the book and carefully considers the wide range of faiths people have and the regrettable lack of training for doctors in this area.
           

Warraich concludes, “Death needs to be closer to home, preceded by lesser disability and less isolation” (p. 278). For deaths to be “truly modern,” we need to push past taboos and misunderstandings about death. 

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