Showing 11 - 20 of 187 annotations tagged with the keyword "Dementia"

The Father

Zeller, Florian; Hampton, Christopher

Last Updated: Jul-12-2016
Annotated by:
Teagarden, J. Russell

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

Genre: Play

Summary:

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

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

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

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

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We Are Not Ourselves

Thomas, Matthew

Last Updated: Jun-20-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In 1951, Eileen Tumulty, the novel’s main character, was nine years old and living with her Irish immigrant parents in the Woodside section of Queens, New York. The novel follows Eileen straight through the next 60 years, but concentrates on the years covering the time of her husband’s Alzheimer’s disease.    

Eileen was forced to learn how to manage a household at a very young age when first her mother was kept in a hospital for 8 months after a hysterectomy, and then again when her mother became incapacitated by alcoholism. Eileen had reason to think this life was her destiny until she accompanied her father to a better part of Queens. There she saw “places…that contained more happiness than ordinary places did.” She concluded, “unless you knew that such places existed, you might be content to stay where you were.” (pp. 15-16) Eileen’s ambition was ignited. While continuing to manage the household and care for her mother, she does well in school, becomes a nurse, and eventually moves up the nursing management at various hospitals.  

Eileen’s ambitions encompassed ideas on her eventual mate. She chooses Ed Leary despite hoping for someone who was not quite so Irish and not quite so much of the same place. Ed was a promising neuroscience graduate student who she thought could be a high achiever with the right motivation: “If there was anything she could help him with, it was thinking big.” (p. 97) Her motivation was not enough and neither were the many offers he received from life science companies. He became a professor at a local community college. He had a passion for teaching students who attend community colleges and he could never see himself anywhere else—for love or money. Ed’s intransigence frustrated Eileen, but she accepted it and plowed ahead. She studied the possible ways of escaping the old neighborhood and also delivered a son she thought she’d never have after years of futile efforts.  

It doesn’t go smoothly. While she is getting surer of where they would go, Ed begins to exhibit disconcerting behaviors. For them to live in Bronxville, Eileen will have to accept a house that needs a lot of money and attention to rehabilitate. The remainder of the story is about how Eileen simultaneously manages Ed’s rapid deterioration from what eventually is diagnosed as Alzheimer’s disease, her job requirements, and a son progressing from adolescence through college.  

We Are Not Ourselves
touches on many of the aspects involved in prolonged illness including the daily struggles managing the care of someone with progressive dementia, complexities of health care delivery systems, frustrations with byzantine health care coverage, and threats to relationships among the individual family members with one another, and the grace that can manifest during the bleakest moments. The author does not dwell on all these issues, but gives them enough attention so that their effects will be recognizable to many readers who have experienced them. In doing so, he was able to draw from his own experiences with his father who was stricken with early onset Alzheimer’s disease.

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My Father's Brain

Franzen, Jonathan

Last Updated: Apr-12-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Jonathan Franzen tells the story of his father’s slow and inexorable decline from Alzheimer’s disease. His story is a familiar one, and one that millions of people can now tell: at first the initial odd behaviors and memory failures attributed to various causes other than dementia, then the diagnosis and medical interventions to stem the inevitable, and finally the inevitable. While Franzen also describes the toll his father’s dementia exacts on the immediate family—as well as some truths it uncovers about his parents’ marriage—he does not put a significant emphasis on family effects.  

Interwoven in Franzen’s recounting of his father’s plight are a few digressions on Alzheimer’s disease. In one he wonders, as many others have, about whether Alzheimer’s disease is more a medicalization of certain behaviors than the result of brain pathology, or otherwise just “ordinary mental illness being trendily misdiagnosed as Alzheimer’s.” (p. 19) In others, he briefly summarizes the well-known theory involving plaques and neurofibril tangles as a cause of Alzheimer’s, and thoughts on how memories form and work in the brain. In yet one other digression, Franzen reminds us that Alzheimer’s disease as originally described in 1906 was a rare type of dementia characterized by early onset in middle age and rapid progression. He further notes that it was not until the latter part of the 20th century when Alzheimer’s disease was tagged as the fifth leading cause of death and the disease of the century, and only through the efforts of a coalition comprising clinical scientists, politicians, and patient advocates. 

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The Last Days of Ptolemy Grey

Mosley, Walter

Last Updated: Mar-07-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Walter Mosley writes in various genres but is probably best known for his mysteries. His 2010 novel, The Last Days of Ptolemy Grey, could be considered another one of his mysteries, but the mystery plot takes a secondary role. Featured more prominently is the struggle the main character, Ptolemy Grey, has with dementia.   

The reader first encounters Ptolemy Grey when he is 91 years old and living alone in an apartment he has inhabited in South Central LA for more than 60 years. Both he and the apartment are in appalling shape. The apartment is cluttered, disorganized, and dysfunctional—as is his aging brain. He knows his mind is failing and seems to him as if it “had fallen in on itself like an old barn left unmended and untended through too many seasons.” (p.153)

Throughout the novel, Mosley presents aspects of dementia and some of its oddities. For example, while Ptolemy is riding on a bus through his town, certain sights trigger clear memories from his childhood 80 years before. At the same time he is unsure where he is going or why. Mosley also shows how people can possibly realize they are slipping into dementia, for example, when Ptolemy stops talking to a friend once “he could see in her eyes he wasn’t making sense.” (p. 122)

Ptolemy’s great-grandnephew Reggie provides him with the assistance he needs to barely maintain his lonely existence in squalid conditions. When Reggie dies, a new person comes into his life. Robyn, a 17-year-old orphan living with Ptolemy’s grandniece, begins to straighten out his apartment and then his mind.    

As Robyn gets Ptolemy’s apartment more organized and functional, Ptolemy’s mind starts to get more organized and functional as well, but only a bit more. Unsatisfied with his progress, Robyn takes Ptolemy to a physician who has an experimental drug for dementia. Ptolemy is told that if he takes the drug he will regain his mental acuity but probably not live more than a few weeks, or months, at best. Without hesitation he takes the drug—“I wanna make it so I could think good for just a couple a mont’s, Doc” (p. 126)—and rapidly regains many memories and mental capacities. During the time he has with his newfound mental agility, Ptolemy is able to make good on a commitment from his childhood and to solve the mystery of Reggie’s death. While the experimental drug enables Ptolemy to wrap up his business, it also produces a rather violent end to his life.

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Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Chaplain-poet Nancy Adams-Cogan's 3rd chapbook of poems complements her earlier work as "a receiver of stories" (p.1). The theme for this collection of 39 poems is dementia and the poems are smartly accompanied by a number of photos by Rod Stampe.  What comes through in these poems is the deep humanity of those who struggle with memory loss—both the individual experiencing it directly and the family members or caregivers accompanying them on their journey. Adams-Cogan captures well the "many faces" of dementia and how those faces "may vary day-by-day-by-day" (p.84). The poet also takes a close look at her aged and aging selves in the poems "Myself in Decline" and "Entanglements."

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Best Boy

Gottlieb, Eli

Last Updated: Nov-09-2015

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Best Boy is a novel about Todd Aaron, a 54-year-old autistic man who has lived for 40 years in a Payton LivingCenter (sic); he was involuntarily committed to this facility. Todd has been in five previous places for congregate living, but Payton seems to be the best for him, thanks in part to a loving caregiver, Raykene. Todd has accepted the institutional “Law” of Payton and takes his drugs right on schedule, including Risperdal, an antipsychotic that slows him down, making a “roof” over him and muffling, he says, “the voice in my brain.”  The story is told from Todd’s point of view, often with startling imagery:  he pictures his dead parents turning into giant cigars, a raindrop “explodes,” and, when upset, he rocks back and forth and feels “volts.”  Now and then he recalls that his mother called him her “best boy.”
   
Into this stable setting come three personified disruptions. The first two are fellow patients, Terry Doon (a pun on “doom”?), a brain-injured roommate who teases, torments, and bullies Todd, and Martine Calhoun. While Terry disrupts Todd’s living space, Martine is a siren who lures him to different parts of Payton’s campus; she is also a rebel who urges him to stop taking Risperdal and shows him how to hide the drug in his hand and get rid of it later.   

The third is Mike Hinton, a day staffer who lies, manipulates, and in general mistreats Todd. Todd understands Hinton as evil and entertains violence against him—but does not act. Hinton has sex with a female patient who dies, apparently a suicide, although the language of Payton’s staff, as reported by Todd, euphemistically hides the truth.

Todd has the “Idea” of escape and sets out, on foot, to go 744 miles to “home.” A state policeman soon returns him to Payton.

Now and then Todd’s younger brother Nate calls, often while drinking. Near the end of the book, Nate and his wife Beth take Todd to his childhood home, where he had been abused physically and mentally. In a moving scene, Todd enters the only unchanged area, a crawl space and feels the return he yearned for.            

All three tormentors leave Payton, and there is a surprising resolution for Todd.  The balance and harmony of Payton’s LivingCenter are restored, and Todd, reminded by Raykene, affirms that “Somebody always loved me.” 

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

The author, an experienced surgeon, believes that we will be less frightened by the prospect of death if we understand it as a normal biologic process. He points out that 80 percent of deaths in this country now occur in hospitals and are therefore "sanitized," hidden from view, and from public comprehension. He describes the death process for six major killers: heart disease, stroke, AIDS, cancer, accidents/suicide, and Alzheimer's disease.But the power of the book is in its intensely personal depiction of these events and in the lessons which Nuland draws from his experiences. The message is twofold: very few will "die with dignity" so that (1) it behooves us to lead a productive LIFE of dignity, (2) physicians, patients, and families should behave appropriately to allow nature to take its course instead of treating death as the enemy to be staved off at any cost. Only then will it be possible for us to die in the "best" possible way--in relative comfort, in the company of those we love/who love us.

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Summary:

In 1847, one of every six women whose babies were delivered by the medical students and supervising doctors at Allgemeine Krankenhaus (General Hospital) in Vienna died of puerperal fever (also known as childbed fever). In contrast, the incidence of this disease in women delivered by hospital midwives was dramatically lower and puerperal fever was quite rare when mothers had their babies born at home.While a few physicians (most notably Alexander Gordon and Oliver Wendell Holmes) realized that childbed fever was a contagious process, it was Semmelweis who identified the nature of the problem as stemming from the failure of obstetricians and medical students to wash their hands and change their clothing, especially after performing autopsies or doing surgery. He mandated that doctors and students wash with a disinfectant (chloride of lime) before examining any woman in labor.Despite the dramatic reduction of maternal mortality on his obstetrical unit, his ideas and methods were not well received. Semmelweis was reluctant to conduct experiments on animals to prove his theory and resisted publishing his findings in any medical journal. When he finally did write a book, The Etiology, the Concept, and the Prophylaxis of Childbed Fever, it was difficult to read and failed to impress many obstetrical experts.With his health failing and his behavior increasingly erratic and inappropriate, Semmelweis was committed to a state-run mental hospital. He died two weeks later. The official cause of death was sepsis secondary to an infection of his finger. The author is convinced, however, based on the autopsy report and findings upon exhumation of the body in 1963, that Semmelweis was beaten to death by the staff at the asylum. He may well have been suffering from Alzheimer's presenile dementia at the time.

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Summary:

Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.

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On Bittersweet Place

Wineberg, Ronna

Last Updated: Nov-18-2014
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom.  Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences. 

Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself.  While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses.  Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy. 

Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time.  In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance.   When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected.  In retrospect she is more adult, more mature than most young women might be in each of these situations.  She is a remarkable young woman with a spirited edge.

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