Showing 11 - 20 of 198 annotations tagged with the keyword "Dementia"

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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Waverly Gallery

Lonergan, Kenneth

Last Updated: May-02-2019
Annotated by:
Teagarden, J. Russell

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

Genre: Theater

Summary:

The play is set between 1989 and 1991, the last two years of the life of Gladys Green, an 85 year old woman who runs a small art gallery in New York's Greenwich Village. She lives on her own near the gallery, but she is watched over by an adoring grandson (Daniel) who lives in the same building, and by a doting daughter (Ellen) and son-in-law (Howard), who live uptown from her. Gladys can’t hear very well and she has diabetes, but otherwise she is doing well enough. 

From this point we watch Gladys gradually lose some of her mental capabilities, mostly memory. Our attention is directed to how the family responds and comes to grips with her deterioration. Aware of Gladys’ past before she opened her gallery as an activist lawyer with a frenetic lifestyle, Daniel lays out a strategy the family adopts: “she’s got to have something to do.” Their chief tactic is to keep Gladys in the gallery where she could mix with people, keying off what she said keeps her sane: “Everyone needs someone to talk to, otherwise you’d just go nutty. I love to talk to people.” 
 

This approach works for a while, and mainly through permitting a young artist (Don), who has never before sold a painting, to exhibit his work in the gallery. Don keeps Gladys company and talks to her. He thinks he notices her hearing problem worsening, but Howard tells him, "I’m afraid that’s more her memory than her hearing aid.” What speeds up her deterioration, however, is the gallery losing its lease when the owner of the space decides to turn it into a cafe. 
 

A path ensues that is familiar to many people who have been close to a person losing memory and other mental functions with age. The family desperately wants to keep Gladys as independent as possible, but they need more help as time passes. She can stay in her own apartment for awhile with visiting nurses and aides, but eventually she needs to move in with Ellen and Howard; they never liked the idea of putting her in a nursing home, and they never did. In an aside directed at the audience, Daniel describes what his mother did for Gladys thereafter: she “took care of her, dressed her and cleaned her up and fed her and watched her fall apart, day in and day out with nothing to stop it and no relief in sight.” It did end, though, two months later when Gladys died in Ellen’s home.

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Summary:

In this remarkable anthology, 51 women and men describe their nursing school experiences, from initial fears and anxieties to increasing confidence and appreciation of the profession.  Jeanne Bryner, in her Introduction, explains how she and Cortney Davis deliberately sought a diverse group of nurse-writers, from recent nursing graduates in their twenties to seasoned veterans in their nineties.  Their collection includes different races, nationalities, social and economic classes, and education levels.  What the contributors have in common besides being nurses is that they are gifted writers able to capture in poetry or prose the transforming moments of their lives. Nursing students reading this anthology will recognize many kindred souls, struggling with the same uncertainties and apprehensions, wondering how they will ever accomplish all this, but also gaining command of the profession, relishing its special rewards, valuing patients as their ultimate teachers. All readers will understand what is so special about nursing .




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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Weeks after the birth of her child, the writer receives a phone call informing her that her mother, who has gone missing, has hanged herself.  This memoir, like others written in the aftermath of similar trauma, is an effort to make some sense of the mother’s mental illness and horrifying death. Unlike many others, though, it is the story of a family system—and to some extent a medical system—bewildered by an illness that, even if it carried known diagnostic labels, was hard to treat effectively and meaningfully.  The short chapters alternate three kinds of narrative:  in some the writer addresses her mother; in some she recalls scenes from her own childhood, plagued by a range of symptoms and illness, and her gradual awareness of her gifted mother’s pathological imagination; in some she reproduces the transcript of a video production her mother narrated entitled “The Art of Misdiagnosis” about her own and her daughters’ medical histories. Threaded among memories of her early life are those of her very present life with a husband, older children, a new baby, a beloved sister and a father who has also suffered the effects of the mother’s psychosis at close range.  

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One Crimson Thread

O’Siadhail, Micheal

Last Updated: Apr-19-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

This collection of 150 sonnets takes us through the journey from the writer’s wife’s diagnosis with Parkinson’s, eventually complicated by dementia and overmedication, to her death and his early days of grieving.  Married for over 40 years and close companions, their successive separations deal new blows as they happen: She goes into skilled nursing care, gets lost in delusions, and becomes more frail and erratic, finally succumbs after a fall and a short period in a coma.  The writer draws on biblical metaphors and threads memories of their earlier life together in fleeting images so that the reader is left to infer from glimpses a rich and happy marriage that, he reflects, prepared them—but not enough—for this going.  

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So Much For That

Shriver, Lionel

Last Updated: Jan-18-2018
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The book opens with Shep Knacker packing his bags for his long-dreamed of “Afterlife”—his word for retirement—in Pemba, an island off the coast of Tanzania. He plans to take his wife, Glynis, and his high school aged son, Zach. This plan is not unexpected because Shep and Glynis have made many “research” trips during their 26-year marriage to find the right place (though never to Pemba). But, there were always reasons not to act on their research. An intervention was needed. Glynis is not home while he is packing because she is at some “appointment.” When she gets home, Shep informs her of his plans for the three of them to leave for Pemba, and he further informs Glynis that he’s going whether she comes or not. In response, she informs him that she has cancer—a bad one (mesothelioma); he unpacks, so much for that.

What unfurls from there is more complicated than just the challenges Glynis’s disease produces, though these are monumental challenges. Other people, too, are in need of Shep’s attention. His father’s decrepitude is advancing, his sister is on the brink of homelessness, and his teenage son is detaching from him and life in general. Shep eventually loses his job as an employee at the handyman company he once owned (“Knack of All Trades”) then sold to fund his Afterlife. There’s more. 

Shep's best friend, Jackson, who also worked with him at Knack of All Trades has two girls, and one of them has familial dysautonomia. This progressive genetic disease of the nervous system produces a constellation of medical problems that are bizarre, intense, and serious, before it ultimately produces a tragic end. The trauma and tragedy this disease inflicts in this story (and in life) encompass the entire family, in spite of the heroic efforts of Jackson’s wife, Carol. 
 
The many plot lines in this novel at times proceed independently of one another, and at other times intersect. They concern serious illness experiences and the effects they have on families and also how the American health care system can place burdens on those who need it. Nevertheless, the two families, beaten down by illness, fatigued from encounters with doctors and hospitals, and exasperated from fights with insurance companies, rally enough to make it to Pemba. The trip becomes financially affordable as the result of some narrative gimmickry involving a financial settlement of $800,000 from the company that put asbestos in equipment Glynis had used years before. They would spend the rest of their lives there, longer for some than for others.   

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Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

This Side of Doctoring is an anthology published in 2002 about the experiences of women in medicine. While the essays span multiple centuries, most are from the past 50 years. They reflect on a multitude of stages in the authors’ personal and professional lives. In 344 pages divided into twelve sections, including "Early Pioneers," "Life in the Trenches," and "Mothering and Doctoring," the 146 authors recount - in excerpts from published memoirs, previously published and unpublished essays, poems and other writings, many of them composed solely for this collection - what it was then and what it was in 2002 to be a woman becoming a doctor in the U.S.. All but a handful of the authors are physicians or surgeons. There is a heavy representation from institutions on both coasts, especially the Northeast. Four men were invited to reflect on being married to physician wives. There is one anonymous essay concerning sexual harassment and a final essay from a mother and daughter, both physicians.   Beginning with the first American female physicians in the mid-19th century, like historic ground-breakers Elizabeth Blackwell and Mary Putnam Jacobi, the anthology proceeds through the phases of medical school, residency, early and mid-careers, up to reflections from older physicians on a life spent in medicine. Many of the authors have names well known in the medical humanities, including Marcia Angell, Leon Eisenberg, Perri Klass, Danielle Ofri, Audrey Shafer, and Marjorie Spurrier Sirridge, to mention a few. 

The essays and poems and letters have, as a partial listing, the following subjects: family influences in becoming a physician; professional friendships; marriage; children and their impact on a woman’s career in medicine; the decision not to have children; ill family members; illness as a physician; establishing one's sexuality as a physician; struggles with male physicians and their egos; mentors, both female and male; memorable patients (often terminal or dying); the life of a wife-physician, or mother-physician; the guilt and sacrifice that accompany such a dual life; the importance - and easy loss - of personal time or what internist Catherine Chang calls “self-care” (page 334).
  The anthology also touches on how women have changed the practice of medicine in various ways, prompted by the growing realization, as family practice physician Alison Moll puts it, "that I didn't have to practice in the traditional way" (page 185)  The authors write about the wisdom of setting limits; training or working part-time or sharing a position with another woman; and the constant face-off with decisions, especially those not normally confronting an American man becoming a doctor. 
One conclusion is evident before the reader is halfway through the book: there are many approaches to becoming a fulfilled female physician including finding one’s identity in the field.  Implicit in most of the essays and writings is the lament from obstetrician-gynecologist Gayle Shore Mayer: "Where is the self ? There are pieces of me everywhere", (page 275) recalling a similar cry from Virginia Woolf's Orlando, another essentially female soul trying to find what Richard Selzer has called "The Exact Location of the Soul".
 Several authors discover that female physicians have unique gifts to offer their patients. As internist Rebekah Wang-Cheng writes, “I am a better physician because I am a mother, and I know because of my experiences as a physician that I am a better mother.” (page 151) 

There are sections at the end devoted to a glossary for the lay reader, resources for women (as of 2002), and generous notes about the contributors (which section also serves as a useful index of each's contributions).

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Eros and Illness

Morris, David

Last Updated: Oct-31-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Several threads tie together this ambitious, beautifully digressive reflection on eros and logos in the experience of illness and the conduct of medicine and health care, which takes into account what a complex striation of cultural legacies, social and political pressures, and beliefs go into both.  Framing his reflections on the role of unknowing, altered states, inexplicable events, desire, hope, love, and mystery in illness and healing is a fragmented, poignant narrative of Morris’s own experience of watching his wife succumb to the ravages of early Alzheimer’s. 

Her disease is one that leads both professional and intimate caregivers to the same question:  what do you do when there’s nothing left for scientific medicine to do?  Conversations about palliative care are broadening, he points out, and medical education is making more room for the kind of reflection the arts invite and for spirituality as a dimension of illness experience and caregiving.  Guidance in such explorations can be found in ancient literature, especially in the archetypes provided by the Greek and Roman myths.  Morris makes astute and helpful use of his own considerable training in literary studies to provide examples of how eros and logos—complementary contraries—have been conceived and embodied in a somewhat polarized culture and how incomplete health care is when it doesn’t foster the capacity to dwell in and with unknowing, possibility, indeterminacy, and mystery.  Knowing the limits of scientific medicine may, paradoxically, make it better.  Certainly it can help keep our engagements with illness—always relational, always disruptive, most often to some degree bewildering—humane.




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Annotated by:
Aull, Felice

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

This anthology of poems, short stories, and essays derives from the literary magazine, Bellevue Literary Review, which began publication in 2001. The editor of the magazine and her staff have selected what they consider to be the best literary pieces from the Review's first 6-7 years of publication. Like its parent magazine, the anthology focuses on work that addresses the illness experience, health, healing, and the experiences of health care professionals and other caregivers. The anthology is divided into three parts, each of which has several subsections. Part I, "Initiation," looks at patients' introduction to illness and introduction of doctors to medical education and medical practice. Part II, "Conflict: Grappling with Illness," divides into sections on disability, coping, madness, connections, and family. Part III: "Denouement," addresses mortality, death, loss, and aftermath.

Among the 81 authors represented, seven are physicians, and another half dozen or so are in other caregiving professions such as nursing, social work, counseling. Some writers are well recognized in the literary world (for example James Tate, Amy Hempel, Alicia Ostriker, Rachel Hadas, Sharon Olds, Philip Levine, Floyd Skloot, Julia Alvarez, David Lehman, Rafael Campo, and Abraham Verghese -- the latter two are physicians); most of the less well-known others have published in a variety of venues.

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Dying: A Memoir

Taylor, Cory

Last Updated: Aug-21-2017

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Australian writer Cory Taylor was diagnosed with untreatable melanoma at the age of 60.  In a few short weeks she wrote this memoir, exploring what she was feeling and what is missing in modern medical care of the dying.  She died at the age of 61, a few months after this book appeared in her native country.  

The book has three parts. Part I, Cold Feet, starts right off discussing a euthanasia drug purchased online from China. Taylor’s melanoma has metastasized to many parts of her body, including her brain. It was first diagnosed in 2005, a malignant mole behind her right knee. In the decade of her cancer, she has tried three drug trials, thought about suicide, and received palliative care. She has harsh words for doctors who don’t mention death, a psychologist who doesn’t help her “Adjustment disorder,” and medicine in general that sees death as a failure.      
       
Taylor feels anger, sadness, and loneliness. She finds comfort and camaraderie in a group called Exit, where there’s frank discussion about death. She writes, “We’re like the last survivors on a sinking ship, huddled together for warmth” (p. 14). She has neither religious training nor interest in it. She became a writer late in life, and now she sees a clear purpose for her “final book.” She writes, “I am making a shape for my death, so that I, and others can see it clearly. And I am making it bearable for myself” (p. 31).  

Although scared and suffering, she is reluctant to commit suicide because of the impact on her husband, two sons, and friends. Dying, she writes, “is by far the hardest thing I have ever done, and I will be glad when it’s over” (p. 49).

Part II, Dust and Ashes, describes her earlier life with her mother and father. Her parents were unhappy together and eventually divorced. In her life review, Taylor searches for meaning in the influences on her life. Her family moved often in Australia, also to Fiji and Africa. She feels rootless herself, traveling to England and Japan. Both of her parents die with dementia; she was with neither one at their ends.  
   
Part III, Endings and Beginnings, goes further back to her childhood. She reflects on an idyllic time in Fiji, her discovery of the power of language and writing, and various trials of growing up. She worries that she wasn’t vigilant enough in checking her skin, thereby allowing her disease to become fatal. She feels autonomy in having the Chinese euthanasia drug, but her life is clearly closing in. She says she weighs less than her neighbor’s dog. The last page of the book imagines her death as a cinematic montage, ending with “Fade to black” (p. 141).  

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