Elderhood: Redefining Aging, Transforming Medicine, Reimagining Life.

Aronson, Louise

Last Updated: Oct-07-2019

Carter, III, Albert Howard

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

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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Marrow: A Love Story

Lesser, Elizabeth

Last Updated: Sep-25-2019

Burke, Katherine

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Elizabeth (Liz) Lesser receives a call from her sister Maggie, telling her that she has had a relapse of lymphoma. Maggie’s best chance of survival is a bone marrow transplant; of the three other Lesser sisters, Liz is Maggie’s perfect match. In an effort to bolster the stem cells’ chance to be successfully grown, harvested, and transplanted, Maggie and Liz embark on a process to do a “soul marrow transplant;” with the help of a therapist and through many difficult conversations, the sisters resolve sibling rivalries, explore their family history, and forgive each other for old assumptions and judgments. Through the journey they learn to live with vulnerability and authenticity, and as the poet Rumi writes, meet each other in the field “beyond ideas of wrongdoing and rightdoing.”

Eventually, Maggie’s body begins to succumb to the cancer, and the entire family prepares for her inevitable death. Maggie, an artist who works with dried and pressed botanicals, strives to complete a formidable exhibition entitled “Gone to Seed,” an exploration of life and mortality. Liz seeks forgiveness and reconciliation with their other two sisters. Finally, Maggie and her family wrestle with the decision to end standard treatment, begin palliative care, and consider physician aid in dying.

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The Genius of Marian

Fitch, Anna; White, Banker

Last Updated: Sep-16-2019

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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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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The Farewell

Wang, Lulu

Last Updated: Aug-19-2019

Jiang, Joshua

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

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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Salt in My Soul: An Unfinished Life

Smith, Mallory

Last Updated: Aug-16-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Mallory Smith died of complications following a double-lung transplant for cystic fibrosis (CF). She was twenty-five years old and kept an extensive journal on her computer for 10 years. Salt in My Soul: An Unfinished Life is her memoir, edited by her mother, Diane Shader Smith, from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in cystic fibrosis, and the fact that Mallory felt her most well while swimming in the sea. Diagnosed at age three, she spent much of her days and nights treating the disease with medication, nutrition, chest percussive treatments, breathing treatments, adequate sleep, and aggressive treatment of infections. Unfortunately, while still a child her lungs were colonized with B. cepacia, a resistant bacteria ‘superbug’ which makes transplantation highly risky and hence leads to most centers to not accept CF patients onto their wait lists. Ultimately, University of Pittsburgh does accept Mallory as a transplant candidate, although her health insurance puts up every road block possible to her receiving care.

Mallory Smith was extraordinarily accomplished – she graduated from Stanford University Phi Beta Kappa, and became an editor and freelance writer. She was also deeply engaged with life and others; she was grateful for her loving, devoted family, and she developed close, fierce friendships within the CF community, among classmates, and eventually, she fell in love.

She resists being called ‘an inspiration.’ She writes: “I’m not an inspiration. I’m just a person, grounded in compassion, striving to achieve empathy and wanting to make my way with goodness and grace.” (p. 171) She marvels at the miracle of life: “Our existence is the result of stars exploding, solar systems forming. Our Earth having an environment hospitable to life, and then, finally, millions of highly improvable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.” (p 111) Her memoir is a story of living and dying from CF, but it is also an inside look at the brief life of young gifted writer.

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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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The Faraway Nearby

Solnit, Rebecca

Last Updated: Aug-09-2019

Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Collection (Short Stories)

Summary:

Solnit dares the reader to categorize her book. Autobiography, memoir, travelogue, story collection, history, meditations, and pathography could fit. Common to all the categories and subjects covered is storytelling. “It’s all in the telling… and to be without a story is to be lost in the vastness of the world,” Solnit says in book’s opening. Storytelling can bring what is geographically faraway emotionally nearby.

Solnit’s first and last stories lay the foundation for the others in between. Both center on the hundred pounds of apricots she received from one of her brothers who was getting their mother’s house ready for sale when dementia made it impossible for her to live alone. Solnit saw “the apricots as an exhortation to tell of the time that began with their arrival, and so the stories concern the time from when they arrived onward” (p. 240). Solnit considers this time when her mother’s dementia is worsening, an “emergency,” but in this instance, she conceives emergency as “an accelerated phase of life, a point at which change is begotten, a little like a crisis” (p. 250). The book to her, she says, is “a history of an emergency and the stories that kept me company then” (p. 249).

The topics covered during this emergency are many and varied, related and unrelated. Just some of them are: her mother’s dementia, her cancer, her friend’s cancer, leprosy, Che Guevara as physician and revolutionary, Iceland, the Arctic, Mary Shelley’s Frankenstein, Buddhism, and cannibalism. In general terms, illness, pain, empathy, fairytales, and reading and writing are considered. Some of these topics are intertwined and some stand alone.

The book is organized into thirteen numbered “stories.” Each has a one-word title. The titles of the first five stories are the same as the last five in reverse order, i.e., the first and last stories are both called “Apricots.” They are arranged on the table of contents page to form the shape of a bell curve that has been rotated 90 degrees with the apex of the rotated curve comprising the stories, “Wound,” Knot,” and “Unwound.” Threads run through the stories, and perhaps Solnit is telling us the story threads running through the first six stories are wound into a knot and then unwound in stories running through the last six of them. This structure may be more grist for people interested in how literature can be structured than for people interested in the insights into illness experiences literary nonfiction can provide.

Not among the list of stories is one that is printed as a single line running along the bottom of each page in the book. It’s a story is about stories running along side the other stories. In an interview printed in the 8 August 2013 issue of Harper’s Magazine, Solnit said she used this form in part to invite“readers to decide how to read a book that has two narratives running parallel to each other; the thread can be read before, during, or after.”

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In Two Voices: A Patient and a Neurosurgeon Tell Their Story

Clarke , Linda; Cusimano, Michael

Last Updated: Aug-05-2019

Kohn, Martin

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

About 20 Years ago, Linda Clarke, writer, professional storyteller and bioethics consultant was a neurosurgery patient of a colleague, Michael Cusimano at St. Michael's hospital in Toronto Canada. What was a distant relationship turned into one that was much closer. 10 years ago, Linda and Michael had a dialogue about recounting the story of her surgery and their relationship together. Linda became the "architect" of their project-- and they became co-authors in 2019 of In Two Voices: A Patient and a Neurosurgeon Tell their Story. The result is a lyrical co-memoir-- at times riveting, at other times sobering of their shared experience. What is probed goes much deeper than the facts, exposing the actors involved, their lives outside of their callings, their upbringing, and, most importantly, their differing interpretations of an important event during the surgery that only came to full light during the writing process.

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