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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This book represents the 1915 American edition of Brooke's collected poems and is introduced by George Edward Woodberry, an American critic of poetry. A table of contents of titles follows the introduction. Ninety-four poems - all rhymed and almost all of them formal - are thematically arranged on 163 pages.

Thirty six are sonnets. Most of the poems are brief, under two pages in length, and deal with love or ardor (59), death or aging (43), or various combinations of love/ardor and death/aging (33). Only three treat subjects one could call primarily medical or related to medicine: "Thoughts on the Shape of the Human Body" (p. 59), "Paralysis" (p.73) and "Channel Passage" ( p. 90). However, the threads of death, aging, the limitations of one's physicality and loneliness - no strangers to medical humanities courses - are ubiquitous.

His famous sonnet sequence of five poems composed while a soldier in WWI occurs halfway through the book under the grouping "1914." Following the poems is a biographical note by poet Margaret Lavington. There is a photogravure frontispiece dated 1914 with a reproduction of the poet's autograph beneath. The book has no index.

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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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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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Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.            

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.            

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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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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“Old Man Playing with Children” is a 20-line poem (5 quatrains with an ABBA rhyme scheme) describing an elderly man playing outside with his grandsons. The poem opens with the observation of a “discreet householder” that this “grandsire”—whom he sees dancing around a “backyard fire of boxes” in “warpaint and feathers”—will “set the house on fire.” The second quatrain introduces the point of view of a different spectator (perhaps the poet, but this remains unclear), who proceeds, in first person, to “unriddle” for the reader the thoughts of the old man, since the latter’s is a mind one “cannot open with conversation.” 

The remainder of the poem is in quotations, reflecting the soliloquy of the old man - as related to us by this secondary spectator - explicating his reasons for playing so exuberantly with his grandchildren, reasons which are, remarkably, quite straightforward and logical, yet couched in mordant commentary. The first of the three stanzas explaining his behavior and views is justly famous: 

"Grandson, grandsire. We are equally boy and boy.
Do not offer your reclining-chair and slippers
With tedious old women talking in wrappers.
This life is not good but in danger and in joy." 

The playful old man goes on to reject the values of “you/the elder to these and younger to me/who are penned as slaves by properties and causes.” Rather, the old man affirms his decision not to repeat the “ignominies unreckoned” of his own sedate adulthood. Instead, he “will be more honorable in these days.”, i.e., playing with children.

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Two individuals share a struggle that is grueling, depressing, and whose outcome is probably preordained. The Mother (divorced, constantly tired, and fearful of sickness) is "not a good choice for the parent of a chronic invalid" (p. 168). The Son (smallish, clever, and born with some kind of tumor) has previously had an organ transplant (most likely kidney).

Their trek through the realm of sickness unfurls in seven scenes - all hospital wards and finally Hospice. First, the Son is an adolescent in a pediatric ward where the Machine (presumably renal dialysis) prevents his death. There he spots a baby that he dubs a "Not-Dead." She has multiple birth defects due to a chromosomal abnormality and is kept alive by technology. He intuits that while not dead, the baby is not "properly alive" either. He muses about his own status. His mother is always bedside, propping up his spirits.

Next he is in the ICU and then transferred to a medical floor. He receives a blood transfusion after disconnecting the Machine in a likely suicide attempt. Sometime later, he is back in the pediatric ward after receiving an organ transplant. The Son gets admitted to the Cardio-Respiratory unit for a severe infection. In and out of hospitals, he enrolls in college but quits. After getting married, he joins a commune of survivors of medical illnesses known as "The Saved." This collective lives on a farm and members avoid any contact with family.

The Son's health further deteriorates. He is hospitalized in terminal condition. By this time, he has his own child, a 14-month-old boy named Jaybird. In the oncology ward, doctors diagnose three tumors in the Son's brain but he refuses any treatment (surgery, radiation, or chemotherapy). He is moved to Hospice. His absent Father comes to visit and comfort him. When the Son dies, it is the Mother who is alone with him. The Son's wife, Father, Jaybird, and members of The Saved commune are all asleep in the Day Room. Only after the Son dies are the names of the Mother and the Son revealed: Julia and Jonathon.

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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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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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