Showing 131 - 140 of 828 annotations tagged with the keyword "Caregivers"

One Breath

Clark-Sayles, Catharine

Last Updated: Sep-03-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

This suggestively titled collection of poems provides a lyric record of a physician’s way of seeing.  The situations to which the poems bear witness are not only medical, though many are.  Some are cityscapes into which are woven surprisingly astute observations of homeless people or hitchhikers or ducks in the park.  Some explore the geography of a body where memories are held in “neuron chains.”  Some articulate bits of personal history from the point of view of a woman who has spent years in medicine, caring for the elderly, seeing bodies with the double vision of a clinician and a person whose spirituality clearly informs all she sees.

Titles like “ER Alphabet of Hurt” or “Looking for God On the Radio” or “Hippocrates Voyeur” or simply “Scars” may give some sense of the range of focus.  Her vision and voice are strongly local; those who know Marin County, north of San Francisco, will recognize the places that become the poet’s personal geography.  Those who don’t will still see in these poems a sensibility shaped and refined by the knowledge that comes from deep habitation.  

View full annotation

To Be Mona

Easton, Kelly

Last Updated: Sep-03-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

As the story opens, Sage Priestly, 17, is running for class president against Mona, whose popularity Sage finds both threatening, fascinating, and a matter that keeps her in a state of uncomfortable envy. In her efforts to "be Mona," Sage undertakes a drastic diet, changes her haircolor, and focuses all her leisure dream time on Roger--a boy she can't see is incipiently abusive, though her long-time friend, Vern, loves her in a healthy and faithful way--a love that is tested when Sage starts dating Roger and suffering actual physical abuse.  As we learn about her troubled social life, we also learn that at home Sage is a caregiver for her single mother whose bipolar disorder  and depression pose a huge and confusing challenge to the teenage daughter.  Vern's parents eventually intervene to help both Sage and her mother get appropriate care and oversight, and Sage begins to recognize in Vern (and his gay friend Walter, who has suffered his own social challenges) the kind of friend that will last.  The book includes an afterword in which the author provides a note from personal experience on bipolar disorder (one of her parents was bipolar) and abuse, and lists helpful resources. 

View full annotation

Tainted

Pennie, Ross

Last Updated: Sep-01-2010
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Zol Szabo, is public health doctor for the Hamilton Ontario region. He is also a single parent to a seven-year-old, Max, because his wife could not deal with Max’s physical disability. But Sol thinks there is hope for Max in an injection of a miraculous new substance called “Endotox” that may loosen the contractures of his arm. Soon he his investigating a cluster of variant CJD (mad cow) cases that may be related to Endotox. But they also seem to be connected to the grocery store where Sol does his shopping. The products that all victims had in common were an imported candy and a sausage, both Max’s favorites.

Conspiracy theories about corrupt pharmaceutical companies and the antics of a pair of unethical mink farmers lead the investigation in many different directions, all personally threatening to Sol because of the health of his son or the ire of his boss. Pressure from his superiors to avoid publicity cramps Sol’s freedom. He seeks help from an attractive woman detective who, of course, sticks with him to the terrifying (and satisfying) conclusion.

View full annotation

The Blood Spilt

Larsson, Asa

Last Updated: Sep-01-2010
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Attorney Rebecka Martinsson returns to her northern Swedish home to recover from a traumatic experience. She becomes involved in the investigation of the murder of Mildred, a woman priest who was found hanging from a beam in her own church. The investigating police office, Anna Maria Mella, meets opposition, especially from the local organization of hunters, who clearly resented Mildred for having offered shelter on the church lands to a stray wolf. 

It is clear that Nalle, a large, mentally challenged boy, was close to the dead priest, and that his single parent father Lars-Gunnar did not appreciate their friendship. Nalle begins to trust Rebecka, as he trusted Mildred, and he appears to know something. But Anna Maria learns that Mildred had another enemy in her jealous, male colleague; moreover, some of the women in town resented her freedoms.

The many historical and personal ways in which the members of this isolated community are entwined becomes part of the investigation, but before it is complete Mella is confronted with two more murders and two suicides.

View full annotation

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).

View full annotation

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.

View full annotation

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.

View full annotation

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."

View full annotation

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.

View full annotation

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.      

View full annotation