Ladysitting: My Year with Nana at the End of Her Century

Cary, Lorene

Last Updated: Sep-03-2019

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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Strange Relation—A memoir of marriage, dementia, and poetry

Hadas, Rachel

Last Updated: Aug-18-2019

Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Strange Relation is a memoir of the terminal illness of George Edwards, a composer and professor of music at Columbia University, written by Rachel Hadas, his wife, a well- known poet and herself a professor of English at Rutgers University. Hadas begins with the insidious onset of Edwards's dementia, which is eventually diagnosed as frontotemporal dementia, a slow neurodegenerative disease characterized by a progressive paucity - and then absence - of communication, especially speech. She then continues with their meetings with physicians, especially neurologists, social workers, support groups and eventually nursing home personnel, recording, often in the form of her poems, her thoughts and reactions at the time.

The book consists of short chapters, more or less chronological, with occasional flashbacks to earlier periods in her life or their marriage. In addition to her poems, there are ubiquitous references to literature, many of them familiar, as well as not so familiar illness narratives by patients and relatives, especially those involving dementia and bereavement. George died in 2011, the year of the publication of this book, after 33 years of marriage to Ms. Hadas.

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That Good Night: Life and Medicine in the Eleventh Hour

Puri, Sunita

Last Updated: Aug-13-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Sunita Puri, a palliative care attending physician, educates and illuminates the reader about how conversations about end of life goals can improve quality of life, not just quality of dying, in her memoir, That Good Night: Life and Medicine in the Eleventh Hour. Thirteen chapters are grouped in three parts: Between Two Dark Skies, The Unlearning and Infinity in a Seashell. The arc of the book follows Puri as she is raised by her anesthesiologist mother and engineer father – both immigrants from India – Puri’s decision to enter medical school, her choice of internal medicine residency followed by a palliative care fellowship in northern California and her return to practice in southern California where her parents and brother live. Besides learning about the process of becoming a palliative care physician, the reader also learns of Puri’s family’s deep ties to spirituality and faith, the importance of family and extended family, and her family’s cultural practices.

Puri writes extensively about patients and their families, as well as her mentors and colleagues. She plans and rehearses the difficult conversations she will have with patients in the same way a proceduralist plans and prepares for an intervention. She provides extensive quotes from conversations and analyzes where conversations go awry and how she decides whether to proceed down a planned path or improvise based on the language and body language of her patients and their family members. We visit patients in clinic, in hospital, and at home, and at all stages of Puri’s training and initial practice. Some of the most charged conversations are with colleagues, who, for example, ask for a palliative care consultation but want to limit that conversation to a single focus, such as pain management. We also learn of the differences between palliative care and hospice, and the particularly fraught associations many have with the latter term. She feels insulted when patients or families vent by calling her names such as “Grim Reaper” or “human killer” (p. 232), but understands that such words mean that more education is needed to help people understand what a palliative care physician can do.

As a mediator of extremely difficult conversations, where emotions such as shame, guilt, fear, helplessness and anger can swirl with love and gratitude, Puri finds the grace to acknowledge that all such emotions are part of the feelings of loss and impending grief, and to beautifully render her reflections on these intimacies: “Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.” (p. 206) Having met many dying people she notes: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.” (pp 221-2)

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Survivors

Pratt, Arthur

Last Updated: Jul-19-2019

Thomas, Shawn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

For much of the western world, the Ebola crisis came and went without much fanfare. Perhaps we were jolted by the initial news stories, taken aback by the images from affected areas, and slightly unnerved by the travel advisories as we entered security lines at the airport. But for the most part, the Ebola outbreak was an abstract crisis affecting people on the other side of the world, multiple continents away. The closest that most Americans came to Ebola was to hear in the news about the four diagnosed cases in Texas and New York City. It is safe to say that most of the world remains unaware of the depths of this crisis in the West African hotspot countries of Liberia, Sierra Leone, New Guinea, and Nigeria.

Arthur Pratt is a Sierra Leonian pastor and filmmaker, and he witnessed firsthand the invisible enemy that threatened to destroy his country, the communities, and the families that lived there. Despite the human cost that this disease extracted from the West African people, Pratt was inspired by how the people in Sierra Leone rose up to defend their country from a viral invasion that was attacking “the fabric of what it means to be African.” He felt it necessary to tell the world the story of Sierra Leone’s unsung heroes, and so he created a documentary titled Survivors, which focused on the work done by the ambulance drivers and nurses, interwoven with personal stories of children, mothers, fathers, and communities touched by the disease. Survivors gets up close and personal to the 21-month battle against Ebola in West Africa, and shows how the common people of Sierra Leone risked everything to come together and fight back against an existential threat.

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Bodies of Truth: Personal Narratives on Illness, Disability, and Medicine

Moore, Dinty; Murphy, Erin; Nicholson, Renee

Last Updated: Jul-19-2019

Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Bodies of Truth gathers twenty-five essays about experiencing illnesses and disabilities from the perspectives of patients, healthcare professionals, and families. These personal stories join the growing company of narratives that reflect on the inner experience of illness or caring for the ill and on the social circumstances that influence those experiences. In addition to the diversity of perspectives, the editors have selected pieces about an exceptionally wide range of health conditions: multiple sclerosis, brain damage, deafness, drug addiction, Down syndrome, pain, cancer, infertility, depression, trauma, HIV, diabetes, food allergies, asthma. They also include essays on the death of a child and an attempted suicide.

The essays resist easy categorization. In their Preface, the editors explain that they took “a more nuanced approach” to organizing the contributions loosely by themes so that they would “speak to each other as much as they speak to readers.” For example, Teresa Blankmeyer Burke’s spirited “Rendered Mute” calls out the OB-GYN who refused to remove his mask during delivery to allow this deaf mother-in-the-making to read his lips to exchange vital communications. Her essay is followed by Michael Bérubé’s “Jamie’s Place.” In it the father recounts the emotionally and logistically complicated path he and his son with Down syndrome navigate as they seek a place for him to live as independently as possible as an adult. This sequence invites readers to listen to two stories about disability from differing parental perspectives and circumstances. But perhaps readers can also to find commonalities in ways social attitudes toward disability fold themselves into the most intimate moments of the families’ lives.

Several of the essays take readers into a professional caregiver’s medical and moral struggles. In “Confession” nurse Diane Kraynak writes sensitively about a newborn in intensive care who distressed her conscience. She was troubled by both the extensive medical interventions he was given “because we can” and their failure to save him. When Matthew S. Smith was an exhausted neurology resident, he ignored a stroke patient who inexplicably handed him a crumpled paper. Scribbled on it was a ragged, ungrammatical, and urgently expressive poem, which he read only years later, admonishing himself “to cherish the moments of practice” that could “change your life forever (“One Little Mind, Our Lie, Dr. Lie”). Madaline Harrison’s “Days of the Giants” recounts “the sometimes brutal initiation” of her early medical training decades ago. Narrating those struggles has led her to “compassion: for my patients, for myself as a young doctor, and for the students and residents coming behind me.”

Overall, the essays range widely across medical encounters. After attending her husband’s death, Meredith Davies Hadaway (“Overtones”) became a Certified Music Practitioner who plays the harp to calm hospice patients. Dr. Taison Bell graciously thanks a pharmacist that he regards as a full partner in his treatment of patients (“A Tribute to the Pharmacist”). Tenley Lozano (“Submerged”), a Coast Guard veteran, was traumatized first by the various abuses of male supervisors, once nearly drowning, and then by her struggle to receive psychiatric care.

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The Presentation on Egypt

Bordas, Camille

Last Updated: Jul-15-2019

Galbo, MA, MILS, Sebastian

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

‘It wasn’t his job to explain it over and over, to sit the families down and say, “The husband/the brother/the son you knew is no more, it’s only machines breathing for him now, and you wouldn’t be letting him go, because he’s already gone."’ These are the frustrated musings of Paul, a wearily disillusioned brain surgeon who struggles with the emotional aftermath of delivering grim prognoses to his patients’ families. After comforting a patient’s wife who has decided to remove her husband from life support, Paul hangs himself in his family’s laundry room, leaving neither a note nor trace of what compelled him to take his own life.

Career burnout, perhaps even a nagging sense of futility, would seem to be among the issues behind Paul’s mysterious suicide—in one conversation with a patient, he alludes gnomically to bad dreams that leave him either flummoxed or exhausted. Whatever the cause, Paul’s death leaves gaping lacunae in the lives of his family—his wife, Anna, and daughter, Danielle—that they struggle to patch and, in their own ways, comprehend. It is Anna who finds Paul, hanging, in the laundry room, though ‘she didn’t scream. She didn’t believe what she saw…' In that moment of speechlessness, of disbelief, Anna devises a ‘cold plan’ to keep secret the true circumstances of Paul’s death. Concealing the truth from her daughter, Anna creates a scaffolding of lies, false impressions, garbled half-truths that shape both Danielle’s and her own perception of the past.

Years later, in a moment of introspection, Danielle intuits, not likely for the first time, that her 'mother was lying about her father’s death. […] Anna insisted that the heart attack hadn’t woken him, but that didn’t make any sense to Danielle, who could be woken up by the smell of toast.’ Danielle dimly senses that her father had ‘woken up and suffered,’ but cannot grasp the facts that her mother withholds.

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The Unspeakable Mind: Stories of Trauma and Healing from the Frontlines of PTSD Science

Jain, Shaili

Last Updated: Jun-19-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

A psychiatrist and PTSD (post-traumatic stress disorder) specialist, Dr. Shaili Jain has written a book on PTSD and its many angles, from diagnosis to treatment to a larger perspective on cultural and historic influences on the development of traumatic stress. She weaves the story of her own family’s experience with the Partition of India and Pakistan in 1947, particularly its effect on her father and grandparents, as a way to consider the effect of trauma on family, but also how those traumas become ‘unspeakable.’

A brief but effective introduction outlines the seven parts of the book:
1. Discovering Traumatic Stress: historical perspective and the changing language to describe the effects of trauma.
2. The Brain: the physiologic and psychological underpinnings of PTSD, including effects on memory formation and retrieval.
3. The Body: such as addiction, cardiac effects and concerns at different stages of life.
4. Quality of Life: domestic and sexual violence, socioeconomic factors.
5. Treating Traumatic Stress: programs, treatment strategies and psychopharmacology.
6. Our World on Trauma: global health, large scale tragedy, terror and war.
7. A New Era: An Ounce of Prevention: resilience, accessibility of care including early and preventative care.

Additionally, almost 100 pages of notes, glossary, resources and an index provide an easy way to further explore, to use the book to look up specific topics, and underscore the heavily researched nature of the text. The book is eminently readable, with numerous, well-placed stories of patient encounters and particular experiences and manifestations of PTSD. These stories are illustrative of the concepts Jain ably explains. However, they also provide an insider’s view of what happens in the consulting room. In the prologue, Jain describes a young Afghanistan War veteran, who has been hospitalized after a violent outbreak at a birthday party: “Josh’s PTSD was fresh, florid, and untreated…. His earlier poise caves in to reality, and his face falls to anguish.” (p. xvi) We are in the room, listening to the patient, witnessing the tears of the medical student, glimpsing the attending psychiatrist’s response, and relating to Jain, as a psychiatry chief resident, as she understands that the individual before her, even as he shows classic signs of traumatic stress, remains an individual, a person in need of care.

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The Scar: A Personal History of Depression and Recovery

Cregan, Mary

Last Updated: Jun-11-2019

Carter, III, Albert Howard

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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The House on Lippincott

Burstow, Bonnie

Last Updated: Apr-03-2019

Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Miriam Himmelfarb is the middle of three daughters of holocaust survivors Rachael and Daniel, who are secular Jews born in Europe. Safe in the house on Lippincott in an immigrant neighborhood of Toronto, Sondra, Miriam and Esther grow up hearing their parents’ nightmare screams every night. They bask in genuine affection and learn to respect the horrific history of their elders whose needs come to dominate their own. Their father angers at the slightest provocation, and every tiny domestic issue is a reminder of Auschwitz.

These conditions become their own form of trauma. Daniel allows his child-abusing younger brother into the home where he secretly molests Sondra. The girl flees to live on the street in prostitution and addiction. Esther turns to religion and marries within the faith, finding comfort in traditions. Following in the footsteps of her professor mother, Miriam becomes a philosopher. She briefly moves out during her studies to live in the avant-garde Rochdale College, but she is unable to build a life outside the parental home and returns, denying herself independence and love. The loss of her mother by carefully planned suicide is terrifying.

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Finding Our Way Home; A Family’s Story of Life, Love, and Loss

Dagnone, J. Damon

Last Updated: Jan-07-2019

Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

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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