Showing 1 - 10 of 201 annotations tagged with the keyword "Dementia"

Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Cyril Wilkinson and his wife Kay make a pact. On Kay’s eightieth birthday, when Cyril is already eighty-one, they will commit suicide together. Cyril, a physician in the British National Health Service (NHS) secured a supply of secobarbital as the means to their end. It was 1991. They have planned well ahead; another twenty-nine years will pass before Kay’s eightieth in 2020. 

Motivating the pact was the death of Kay’s father after “a good four years of steady deterioration, followed by a solid ten of nothing but degradation” from dementia (p. 7). They had just arrived home from his funeral service, and were reflecting on what they had been through. At one point, Cyril says, “Your father frankly made me suicidal—or homicidal—or both. Half an hour in his presence passed like a mini ice age,” and then promises Kay, “I will do almost anything to keep the two of us from acceding to such a fate” (p. 12). But Kay is dubious. 

That’s what everyone says...Everyone looks at what happens to old people and vows that it will never happen to them...Somehow they’ll do something so their aging will proceed with dignity...Everyone thinks they have too much self-respect to allow a stranger to wash their private parts...Then it turns out that, lo and behold, they’re exactly like everyone else! And they fall apart like everyone else, and finish out their miserable end of their lives like everyone else. (pp. 12-13)
And so Kay dithers over the next few months whether to agree to the pact, but once her mother begins showing signs of dementia; “I’m all in,” she tells Cyril (p. 17).

Cyril and Kay proceed through the subsequent twenty-nine years, with Kay raising their three children, retiring, finding new work and passions; Cyril going on and on about politics, the NHS, old people; and both watching their remaining parents pass on, traveling to far-flung locations, becoming grandparents, aging. Then the day arrives; happy birthday, Kay? 

The novel structure is simple or complex depending on how a reader approaches it. The first chapter sets up the pact. The second chapter leads up to the day of reckoning and becomes the first story telling what became of the Wilkinsons’ plan. The next eleven chapters envision alternative scenarios unfolding from choices Cyril and Kay make before and on their pre-determined end date. Some scenarios stem from one or both of them not going through with their pact. Some scenarios involve recognizable and available options today, and some are wholly futuristic and unattainable. Some scenarios are happy, some are sad, all are unsettling. These chapters can read as independent stories offering different choices and endings. But they can also be read as interdependent and collectively building toward a point of view on the question: Should we stay or should we go?   
 

The interdependence and complexity of the chapters arise from the through lines among them. From the third chapter on, for example, the first few sentences of each chapter are taken verbatim or slightly modified from some part of a preceding chapter. Other blocks of text appear in one or more chapters. One through line even extends beyond the book to another of Shriver’s novels (So Much For That). Kay and Cyril exhibit the same personalities and preferences, and express the same general hopes and desires through all the chapters. Other through lines are shared events or recurring arguments and debates; however, not always with the same outcomes.

The four years preceding Kay’s eightieth birthday overlap both the decision of the United Kingdom (UK) to leave the European Union (“Brexit”) and the Coivd-19 pandemic. Thus, during the time Cyril and Kay are deciding whether they will actually leave or remain on Earth, the UK is deciding whether to leave or remain in the European Union, and while Cyril and Kay are seemingly willing to die rather than fight the ravages of old age, millions of people are willing to fight the ravages of Covid-19 rather than die. These juxtapositions pop up often giving the Wilkinsons’ decision added poignancy.


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The Father

Zeller, Florian

Last Updated: Apr-26-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The basic plot of The Father mirrors the all-too-common trajectory people with dementia follow: first they deny any problems; then they progressively need more in-home assistance; and then they require institutionalization. This scenario, however, gets obscured when watching the film’s main character—the father—wrestle with quotidian activities and familiar faces. The viewers wrestle with him, and become just as confused and rattled. Florian Zeller, the screenwriter and director, admits he wants viewers feeling what people with dementia feel. He succeeds in the movie as he succeeded in the Broadway play version preceding it.

The father, Anthony, lived in his London flat with help from hired caregivers and his daughter, Anne, who lived nearby. After Anthony banished several caregivers on grounds they were unnecessary, Anne moves him into her flat, and when he’s too much for her there, she moves him to a nursing home. We’re never quite sure, though. Zeller makes the two flats and the nursing home look almost identical. He changes Anne’s story at different times: she’s still married after ten years; she’s been divorced for five years; she’s relocating to Paris with a lover; she was never relocating to Paris; she relocated to Paris. Anne appears as a different person on occasion and the husband she may or may never had appears as different people. Zeller overlays these confusing surroundings and events by jumping forward and backward in time, and repeating some scenes with slight variations. Eventually, Anthony says, “strange things are going on around us.” Viewers will feel the same, and that’s the point.

The movie ends as Anthony awakes in his nursing home room. Just as we are lured into thinking we have returned to the common dementia trajectory at its end, we see his nurse is the person who had appeared as Anne before, and his room looks like the bedrooms in both his own and Anne’s flats. We wonder.

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Elizabeth is Missing

Walsh, Aisling

Last Updated: Feb-16-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Maud’s dear friend Elizabeth is missing, suddenly. Maud’s dear older sister Sukey is long missing. And, Maud’s mind is missing more and more. These three facts and how they relate to one another form the matrix of this movie. Maud Horsham is an elderly widow living alone with help from a home health aide’s daily visits, and from an attentive, if occasionally resentful daughter and a loving teenage granddaughter. She is well into the inexorable decline dementia brings, but at a stage where the support in place and reminder notes she leaves around are enough to keep her functioning. 

On a routine visit to her friend Elizabeth, and while they dig in Elizabeth’s garden, Maud comes across the top of a compact that immediately takes her mind to a scene seventy years before when her sister Sukey was applying makeup with what looks to Maud as the same compact Sukey had in her hand. This flashback starts the story of Sukey’s unsolved disappearance as a young adult. A couple of days later, Maud and Elizabeth are to meet outside the Salvation Army store where they both once worked. Elizabeth never shows. 
 

Elizabeth is Maud’s only remaining friend, and Maud sets off to find her. Her search triggers many flashbacks and hallucinations from the time of Sukey’s earlier disappearance, which she then becomes determined to solve. Maud’s worsening dementia often frustrates her own efforts in these parallel missions and also causes family, friends, and officials to doubt her findings and assertions. The parallel stories each have twists, turns, and surprises all the while Maud’s dementia is progressing to where she can no longer live on her own. Nevertheless, Elizabeth is found, Sukey’s grave is found, but Maud’s mind is never to be found again. 

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Dr. Futurity

Dick, Philip

Last Updated: Jun-29-2020
Annotated by:
Brinker, Dustin

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Jim Parsons is a physician living in an alternate 2012, one equipped with technology mildly superior to our own. While on his way to work, his car is abducted from the road and thrown off the natural path of life as we know it, both physically and temporally. Parsons finds himself in the distant future, roughly three centuries from his own, in a monoethnic society of young beings that resulted after generations of war led by people of color against the white domination of the A.D. era. The true ideology of the society is revealed when Parsons saves the life of a political radical, a proponent of the re-outlawed women’s suffrage. As he is taken into custody and processed for the crime of preserving life, the leader of the society, Al Stenog, describes the societal fetishization of death resulting from government-controlled population limits. Natural birth has been outlawed, enforced via early sterilization of males and a strictly monitored, equivalent exchange of deaths and births. Genetic material is selected via a tribal selection process based upon quantifiable measures of beauty and intelligence, whereby the fertile matriarch of the dominant tribe becomes the Mother Superior from whom eggs are harvested. The eugenic ideology extends into one’s conception of self—those currently living believe themselves to be genetically inferior to the zygotes housed in the government’s central repository. As a result, the society is described as being an amalgamation of all races of color whose average age is 15.

Stenog exiles Parsons to Mars, but his transport is intercepted by the masterminds behind his time travel. This group, now the genetically dominant tribe, explains their motive—the revival of their ideological patriarch. He has been cryogenically preserved for 35 years following an arrow to the heart. Parsons manages to save his life, but the patriarch is shortly thereafter found dead, his heart once again pierced with an arrow. It is revealed that the tribe intends to systematically eradicate all European colonization efforts in history, intending to halt centuries of white oppression; the patriarch had been stabbed during his attempt to begin the tribe’s crusade with the elimination of Sir Francis Drake in 1579. Returning to that time, Parsons discovers two startling facts: Stenog had traveled back to replace Drake, implying that all colonizers were from the future, and Parsons was the true killer of the patriarch, albeit accidentally. Despite the ensuing fallout involving much time travel, Parsons is returned to his own time, spared from temporal exile by his future children spawned from the impregnation of the Mother Superior.

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Summary:

Elizabeth Siegel Watkins reports on the use of estrogen alone and in combination with progestin for women during menopause and after menopause from the 1890s until the book was published in 2007. She concentrates on the sixty years between 1942 and 2002. The event Watkins uses to mark 1942 as an important moment is the U.S. Food and Drug Administration (FDA) approval for the estrogen product Premarin as hormone replacement therapy (HRT) in women with menopause symptoms. The event she uses to mark 2002 is the release Women’s Health Initiative (WHI) findings that showed estrogen is not the “elixir of life” that many thought it was then.  

Watkins builds her story off the trajectory of estrogen use during this sixty-year period, which spanned two peaks followed by two crashes. The estrogens for HRT first crested in the early 1970s before its use dropped dramatically in 1975 on uterine cancer fears. Estrogen use began to rise in the early 1980s on regained confidence from combined use with progestin to reduce uterine cancer risk and from hopes that bone loss could be prevented and even reversed. This resurrection continued through the 1990s as estrogen use during and after menopause became “associated with reduced risk of colon cancer, prevention of tooth loss, lower incidence of osteoarthritis, increase in bone mass, reduced risk of Alzheimer’s disease, and lower rates of death from all causes” (p. 241). 
 

Based on surveys of prescribers and prescription data during this time, Watkins concludes that “physicians who saw menopausal women as patients were…enthusiastic prescribers of HRT” (p. 244). They remained enthusiastic, making Premarin the most prescribed pharmaceutical product through much of the 1990s and until 2002 when the WHI trial was stopped three years early because it showed that HRT failed to produce the expected benefits, and even worse.
Women who took the estrogen–progestin pills, as compared with those in the control group who took placebo pills, increased their risk of breast cancer by 26 percent (relative risk of 1.26), coronary heart disease by 29 percent (1.29), stroke by 41 percent (1.41), and pulmonary embolism (blood clot) by 213 percent (2.13). (p. 271)
The investigators advised clinicians based on these results, that HRT “should not be initiated or continued for the primary prevention of coronary heart disease” (p. 271). Watkins quotes an editorial from the Journal of the American Medical Association that went further in saying that the trial “provides an important health answer for generations of health postmenopausal women to come—do not use estrogen / progestin to prevent chronic disease” (p. 273). HRT prescriptions plummeted.  

These clinical inputs into the trajectory of estrogen are just the bare bones of estrogen history. Watkins fills in the story: 
The story of estrogen is woven from several strands: blind faith in the ability of science and technology to solve a broad range of health and social problems, social and cultural stigmatization of aging, shifting meanings and interpretations of femininity and female identity, and the pitfalls of medical hubris in the twentieth century. (p. 1)
Watkins weaves these strands into the story of estrogen, which she tells in a chronological fashion, often as the subjects of individual chapters. Some include: the implications of rising feminism; pharmaceutical company promotional activities; the roles of patient advocacy organizations; FDA requirements for patient information about prescription drugs; generational differences in views of menopause; evolving research methods and evidence standards; and cultural shifts and mainstream media influences. 

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Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.  

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The Father

Zeller, Florian; Hampton, Christopher

Last Updated: Nov-19-2019
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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Primary Category: Literature / Nonfiction — Secondary Category: Literature /

Genre: Treatise

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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The Genius of Marian

Fitch, Anna; White, Banker

Last Updated: Sep-16-2019
Annotated by:
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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Annotated by:
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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