Showing 131 - 140 of 825 annotations tagged with the keyword "Caregivers"

Chronic Progressive

Cohen, Marion

Last Updated: Jul-29-2010
Annotated by:
Schilling, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

In Chronic Progressive, a collection of 151 short poems divided into three parts, Marion Deutsche Cohen, a well spouse, continues her startlingly candid account of caring for her husband Jeff that began in her previous collection, Epsilon Country (1995, see annotation).  Part I of Chronic Progressive describes Cohen's frustrations during the last of the 16 years that she cared for Jeff at home, as multiple sclerosis left him almost completely dependent on her.  Mother of four, a prolific writer, a poet, and a mathematician, Cohen describes unrelenting stress when family services and insurance providers fail her, when she feels she must protect the sanctity of her home as health care aides and agencies treat it like a hospital or nursing home, or when she's exhausted, which is most of the time.  "It's a state, a / chronic state, a chronic progressive incurable state," she writes (55).

The middle section, the longest, follows Cohen during the ten years Jeff resides in Inglis House, a Philadelphia care facility.  These poems mix reflections on the past with working out the rhythms of life without Jeff in the house, but still unshakably on her mind.  In this section, she also writes "The Last Love Poem for Jeff" and anticipates his death in "A New Vow": "I will give you the best deathbed anyone ever had" (108).  In Part III, Cohen experiences relief and begins life with a new spouse after Jeff's death.  She recalls herself as ". . . the one he began with, the one he'll end with / the one who's been too much in the middle" (162).  But she quickly turns to "Wedding Preparations Former Well Spouse Style" and the "Love Poem for Her New Love."

Taken altogether, the poems reveal a profound effort to sustain vitality and remake ways of living-with integrity-at the edge of human endurance.  "Yes, how readily we reclaim our territories," Cohen observes near the end of her book (180).

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Dancing After Hours

Dubus, Andre

Last Updated: Jul-28-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

This story is told from the perspective of Emily, a forty-year-old spinster and former high school English teacher, who tends bar in a Massachusetts town. Emily has built a "disciplined" life, seeking to protect herself from the emotional pain of earlier failed romantic attachments, and from the cynicism that propelled her out of teaching--a cynicism born out of the apathy with which the students responded to her own passionate love of poetry. She has held herself aloof from the cautious social overtures of Jeff, the bar manager.

One night, a white man in a wheelchair and his black male attendant drive up to the bar. The arrival of this pair leads Emily to examine and re-assess her life. "Emily had worked [t]here for over seven years, had never had a customer in a wheelchair, and had never wondered why the front entrance had a ramp instead of steps." The disabled man, Drew, is quadriplegic (the result of diving into a wave at age 21, as Emily later finds out). But he and his attendant, Alvin, seem to be comfortable in the bar and with each other, and Emily relaxes.

As she observes Drew and watches how Alvin helps him, she tries to imagine their lives. "She thought of Drew . . . learning each movement he could perform alone, and each one he could not; learning what someone else had to help him do, and what someone had to do for him . . . So, was anyone boundless? Most of the time, you could avoid what disgusted you. But if you always needed someone to help you simply to live . . . you would . . . become disgusted by yourself."

Emily also imagines Jeff's life as a divorced father, and she can even empathize with Jeff's former wife, who left him. Jeff, she learns, had had a friend who became quadriplegic, the victim of a land mine during the war in Vietnam--hence the ramp entrance to the bar. As the story ends, Emily agrees to let Jeff cook lunch for her.

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Annotated by:
Bertman, Sandra

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Holding Our Own: Embracing the End of Life is a documentary film that shows aging and dying as anything but morbid, and death as the final healing in the hospice way. Art and music are combined as a way to bring people into a subject that they'd rather resist.

The film begins with an art opening in New York City and with the commentaries of curator and others as they view Deidre Scherer's large fabric and thread paintings (see annotation of "Surrounded by Family and Friends")--of people at the last moments of their lives. The artist has captured for us, even in the midst of suffering, genuine moments of tenderness.

An interview with palliative care physician Ira Byock guides the conversation, presenting a most refreshing doctor's perspective. The commentaries of hospice personnel, artist, and members of the Hallowell singing group punctuate the profoundly intimate scenes, filmed in institutional settings and in homes. The singers, who sing to the dying patients, see beyond their own fears; they recognize and want to honor dying persons for who they are: "This is not about singing it right for an audience...its about being totally present for the people you're singing for...and wanting it to be a gift." They model the magic of human connection called by Byock "the ground substance of therapeutics" The healing is mutual: "I can feel sad, cry, I can feel a heavy heart...but it's not depressing....It's a wonder...you can feel love, joy, sorrow, but so alive.... you feel the blessing of your own life."

Two additional segments, "More about Deidre Scherer," and "More about the Hallowell Chorus, and a concise study guide are offered with the DVD.

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Annotated by:
Bertman, Sandra

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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Tinkers

Harding, Paul

Last Updated: Jul-06-2010
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Novel

Summary:

George Washington Crosby is dying from kidney failure. The eighty-year-old man has a crumbling body - Parkinson's disease, cancer, diabetes, and previous heart attacks - and a murky mind. He is hallucinating and his memories are disordered. George occupies a hospital bed in the living room of a house that he constructed himself. His family keeps him company as they await his imminent demise.

Some of George's thoughts revolve around his passion for clocks and his skill in repairing them. Most of his memories center on his father, Howard Aaron Crosby. About seventy years earlier, Howard owned a wooden wagon and a horse and scratched out a living as a tinker and a peddler of household goods. Howard's father had been a Methodist minister who exhibited worsening signs of mental illness. The man was eventually escorted out of his home. Only a young boy at the time, Howard would never see his father again.

Howard suffered from frequent and violent epileptic seizures. His wife and the family doctor thought Howard should be admitted to the Eastern Maine State Hospital, an institution housing feebleminded and insane individuals. Howard had a different opinion. One evening, he left his wife and four children and headed to Philadelphia. He took a new name and a new wife. He found work in a grocery store. The frequency of his seizures decreased dramatically.

George's final memory before death is a vivid one. He recalls a Christmas dinner in 1953. Someone is at the door. It is a surprise (and brief) visit by Howard to George's house. It is the first time that he has seen his father since George was twelve.

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Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Extraordinary Measures, based on events in the life of John Crowley and his family, dramatizes the father's quest to find a cure for Pompe disease, a relatively rare genetic condition that afflicts two of his three children.  The quest brings into play three powerful, often competing human motives:  a father's love for his children, a scientist's pursuit of knowledge and recognition, and a corporation's mandate for profits.  Crowley (Brendan Fraser), an energetic marketing executive, and his wife Aileen (Keri Russell) are told that their children Megan (Meredith Droeger), age eight, and Patrick (Diego Velazquez), age six, have reached the upper limits of their life expectancies.

When Megan, an affectionate, playful, and clear-sighted child, is rushed to the hospital with symptomatic heart and respiratory failure, a young physician empathically encourages the parents to think of their only daughter's immanent death as a "blessing" that will end her suffering.  However, Megan survives.  "So I guess you could say we dodged that blessing," Crowley echoes back to the doctor.  Seeing Megan's will to live reinforces John's wish to make her well, and he abruptly abandons his promising career to find a medical researcher who can reverse Pompe's effects. 

Immersing himself in medical journals and websites, John discovers the intriguing research of Robert Stonehill (Harrison Ford).  A cranky, renegade scientist who thinks to the beat of rock music blasting from a boom box, Stonehill has developed a cutting-edge theory about correcting the enzyme deficiency in the cells of people with Pompe, which gradually weakens skeletal, respiratory, and heart muscles.  However, to produce a treatment derived from his theory, he needs more funding.  John immediately creates a fund to support Pompe research, and he and Stonehill form a mutually exasperating partnership.  They lock horns with each other, venture capitalists, and finally a large genomic research corporation, Zymagen.

Despite the scientist's abrasive ways, Zymagen gives Stonehill a lab and creates employment for Crowley.  However, the two confront the company's culture of rigorous competition among its scientists and its focus on profit margins that ignore the fates of individual children.  When the Zymagen scientists develop a promising therapy, they decide to offer the treatment only to infants, who are most likely to experience benefits.  Disqualifying Crowley's children from the promising trials, this decision, combined with Crowley's obvious conflict of interest, creates the film's final obstacle.  Stonehill and the executives uncharacteristically collaborate to overcome it. 

This ending might seem implausibly neat, but it's consistent with the film's mostly evenhanded approach to the dilemmas of pursuing treatments for orphan diseases.  Toward the end, we witness even Crowley, albeit uncomfortably, reaching beyond his fatherly motives for the Pompe project and turning his argument for bringing the treatment to market from children to profits.  The longer the patients live, John assures the executives, the more treatments Zymagen will sell.  The film leaves space for viewers to ask to what extent Crowley's argument creates a fair compromise or opens an ethical quandary.  In a closing narration, the film moves beyond the fictionalized characters and plot to the real Crowley children and a tempered victory.  Yes, the Pompe treatment stopped the progression of the disease and improved Megan's and Patrick's hearts.  But it has not cured the Crowley children, and almost certainly it won't.   The treatments do, however, show more success when taken at the onset of symptoms.      

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Summary:

McMurphy (Jack Nicholson) escapes work on a prison farm by feigning mental illness, but he finds himself in a far more coercive institution than the one he left behind. The other men, both sane and insane, are just like him: they hide in the locked ward from the law, their families, or the despair of their own lives.

McMurphy animates the dull monotony with fractious games, pranks, and excursions, but he encounters stiff opposition from the head nurse, Mildred Ratched (Louise Fletcher), whose system provides her with pills and electroshock to maintain control. When the nurse discovers that McMurphy has smuggled two women into the ward, she threatens to tell the mother of young Billy (Brad Dourif). Billy commits suicide and an enraged McMurphy tries to strangle Ratched. McMurphy is lobotomized and returned to the ward only to be smothered by his friend Bromden, who then escapes.

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Summary:

Sixty-year old Martha DeClerq cares for her mentally disabled sister, Pauline (Dora van der Groen), in a small town between Brussels and the seaside. Pauline cannot feed herself, tie her shoes, or speak in full sentences; she is stubborn, loving, occasionally mischievous, and particularly devoted to her sister, Paulette (Ann Petersen), who owns a small, tidy shop in town. Cecile (Rosemarie Bergmans), the youngest sister, lives in Brussels with a French intellectual, Albert, and has little contact with her siblings.

When Martha dies, her will stipulates that her estate be split equally between the three sisters, only if Paulette and Cecile care for Pauline themselves. They agree to share Pauline’s care. Although the sisters are fond of Pauline, their relationship with her is awkward and tentative. Initially, Paulette brings Pauline home, and they negotiate the new living arrangements with a mixture of embarrassment and kindness, frustration and delight. When the burden of caring for her sister becomes overwhelming, Pauline is deposited in Brussels at Cecile’s tiny, meticulously kept apartment. When these arrangements become unworkable, Pauline is eventually institutionalized.

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Amazing Change

Carroll, Robert

Last Updated: Jun-04-2010
Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

In his preface to Amazing Change, Robert Carroll speaks directly about the power of poetry to heal. At a time of great personal loss, he says, "I began writing as a way of dealing with the inchoate, yet overwhelming, feelings I was experiencing... hopefully, to facilitate a healing process for myself." The poems collected in Amazing Change, which bears the subtitle "Poetry of Healing and Transformation: The Wisdom That Illness, Death and Dying Provide," reveal the depth and power of that healing process. They show the reader that poetic healing not only engages a person in self-discovery, but also in sharing that discovery with others. Wholeness is a community project.

While Amazing Change deals with serious subjects, many of the poems approach the subjects with humor and a light touch of irony. This is particularly true in "Dr. Bob's Psychomedical Poetics--Infomercial 1" (pp. 78-80) and "Dr. Bob's Psychomedical Poetics--Infomercial 2" (pp. 109-111). "Spiritual Soup" (p. 93) is another example of the value of humor in the good life, along with other core ingredients like marriage, prayer, hospitality, blues, hope, and pot luck.

Among the finest poems in this collection is "Kaddesh for My Father" (pp. 47-53). Written in filial homage to the poet's father, in artistic homage to Allen Ginsberg, and in spiritual homage to the Judaic tradition, "Kaddesh for My Father" seamlessly integrates personal detail and anecdote about his father with ritualized expressions of prayer and emotion.  In this and many other poems, Carroll employs poetic form and/or historical exemplars to enhance the meaning of his work, but never allows them to constrain or dilute his personal vision.

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Dying for Beginners

Clary, Patrick

Last Updated: Jun-04-2010
Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Patrick Clary's Dying for Beginners is a collection of vibrant poems about living (as well as dying); about family, friends, music, loss, war and love. The book's title is evocative of the countercultural insight that dying is an essential part of living.  We only become fully human by coming to grips with our own mortality.  This engagement with mortality emerges from love and humor, as well as from suffering and loss.  Clary's poems speak to what he has discovered about himself, as a beginner to his fellow beginners.

The poet's route to discovery traverses Death Valley, where, during a spiritual retreat and vision quest, he has this epiphany: "Suddenly, I find all my wounds are turning into blessings" (p. 1). This inversion of categories is not an exotic, one-off event, but becomes a new way of looking at the world, a perspective in which life events, carefully observed and described, blossom with deeper meanings that can only be expressed by metaphor or paradox. For example, in "Days I Don't Remember," Clary reflects, "And all my roads are turning into rivers" (p. 27). Or, in "Meditation on the Pays d'Oc," he observes, "Instead of dying, I cough up a butterfly, watch it / dry its wings in the sun..." (p. 74). Or the essential quietism of "That silence moving through our lives was me" (p. 33).

The poet had his first lessons in dying when he worked as a medic during the Vietnam War, In "Orientation at Bien Hoa," he discovers, "Yes, gentlemen / This little war here / Exists only / For one reason: / To give you all the pleasure / You can handle" (p. 10).  He also learns how easy it is to kill with an M 16 rifle, which can "Put eighteen holes in / Whatever you point it at / Inside of two seconds" (p. 11). Meanwhile, the human tragedy of Vietnam takes place all around him.  

Clary reflects on the limits of his calling in "Three Variations", where he observes his own hands, "professionally / Tender on demand, but still uneasy / At your easy tenderness" (p. 35). The words "professionally tender on demand" evoke his work in palliative medicine, although the same words could-and should-apply to medical practice in general.  But Clary recognizes that the human capacity for compassion is not inexhaustible. There will always be a tension between the work that needs to be done ("another pair of hands in the emergency room," p. 63) and our limited reserves of kindness and empathy.

The book ends with a humorous and moving short prose narrative ("Origins of the Earwax Patrol," pp. 83-86) about caring for terminally ill patients.

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