Friday, December 2, 2011

A Bittersweet Season (2011)

by Jane Gross

As painful as the role reversal between parent and child may be for you, assume it is worse for your mother or father, so take care not to demean or humiliate them.
Avoid hospitals and emergency rooms, as well as multiple relocations from home to assisted living facility to nursing home, since all can cause dramatic declines in physical and cognitive well-being among the aged.
Do not accept the canard that no decent child sends a parent to a nursing home. Good nursing home care, which supports the entire family, can be vastly superior to the pretty trappings but thin staffing of assisted living or the solitude of being at home, even with round-the-clock help.

Important Facts
Every state has its own laws, eligibility standards, and licensing requirements for financial, legal, residential, and other matters that affect the elderly, including qualification for Medicare. Assume anything you understand in the state where your parents once lived no longer applies if they move.
Many doctors will not accept new Medicare patients, nor are they legally required to do so, especially significant if a parent is moving a long distance to be near family in old age.
An adult child with power of attorney can use a parent’s money for legitimate expenses and thus hasten the spend-down to Medicaid eligibility. In other words, you are doing your parent no favor—assuming he or she is likely to exhaust personal financial resources—by paying rent, stocking the refrigerator, buying clothes, or taking him or her to the hairdresser or barber.

This is an important book if you have aging parents. It also will be a valuable read for cognizant elderly persons.

Sunday, October 9, 2011

Blood Feud (2011)

by Kathleen Sharp.
Book Review on Center for Medical Consumers web site.
While this is a recurring theme, Blood Feud tells a story we all need to be reminded of. Big PhRMA is about profit not patient good. The point is: caveat emptor. The public is at risk when drug companies fight for market share.

An African proverb holds that "when elephants fight, it's the grass that suffers." This is underscored by the struggles of PhRMA giants Amgen and Ortho-Johnson and Johnson to capture the market share of Epogen and Procrit.

Blood Feud is a sobering story. A similar tale was told in "Pain Killer: A Wonder Drug's Trail of Addiction and Death" (2003) by Barry Meier that deals with Oxycontin.

This book is a thorough expose of many of the dirty tricks played by PhRMA as it pursues is goals of profit over patients' well-being. No one is allowed to stand in PhRMA's way..

Saturday, October 8, 2011

Dignifying Dementia (2011)

Elizabeth Tierney’s (E.T.’s) new book, “Dignifying Dementia” is an important addition to the literature of Alzheimer’s Disease and related disorders. It is the chronicle of a patient, Jim Tierney, as told by his wife, E.T. The book recounts Jim’s slow, steady decline from being a vibrant productive teacher and administrator to a totally dependent patient with Lewy Body Disease. Memorably, it addresses the many disconnects between the patient and his family and the health care community. No segment of the latter is untarnished. E.T.’s struggles to identify health care providers for her husband are frustrating and sad.

“The psychologist offered us chairs but never smiled… I couldn’t believe how unfriendly he seemed.” A neuropsychiatrist, when asked by E.T., “What should I do?” responded, “Don’t buy a boat of a 10,000 square foot house.”

Eventually, after much effort, E.T. assembles a caring team that treats Jim with dignity and, indeed, love. Most people would not have had E.T.’s persistence and moxie. Perhaps, that is one reason why so many dementia patients wind up in nursing homes.

Illness narratives fall into three categories: quest, restitution, chaos. Chaos is the least commonly written and the hardest to read. It may also be the most important, the truest type of pathography. Dignifying Dementia is mostly a chaos story, with an admixture of restitution made possible by the team of carers that formed around Jim. It is a memorable book that will help all of us who will be called to care for vulnerable individuals suffering from the varied forms of dementia. Order from Amazon. Kindle is only $3.99

Sunday, October 2, 2011

Grieving the Death of a Pet (2003)

by Betty J. Carmack
From Publisher's Weekly: ""Rocky's loss taught me how deeply we grieve for our loved animals, the intensity of pain and the length of time it can last," writes Betty Carmack, a nurse and professional pet loss counselor. In Grieving the Death of a Pet, Carmack draws from her experience of counseling more than two thousand people who have lost a beloved pet, as well as the loss of her Rocky and other furry friends. She offers the book as a kind of pet-loss support group to counter "a world that reminds us repeatedly that grief for an animal doesn't count as much as grief for a person." It's poignant and sometimes heartrending, filled with personal stories of love and loss as well as Scripture and thoughts on faith"

Sunday, September 18, 2011

Autistic and Seeking a Place in an Adult World

This is an article from the NY Times about a 22 year-old autistic artist.
"As few as one in 10 [persons with autism] hold even part-time jobs. Some live in state-supported group homes; even those who attend college often end up unemployed and isolated, living with parents.

But Justin is among the first generation of autistic youths who have benefited throughout childhood from more effective therapies and hard-won educational opportunities. The program [described in this article] is based on the somewhat radical premise that with intensive coaching in the workplace and community — and some stretching by others to include them — students like Justin can achieve a level of lifelong independence that has eluded their predecessors."

The full article, Autistic and Seeking a Place in an Adult World, is inspiring and has illustrative multimedia features as well.

Saturday, September 10, 2011

Comfort: A Journey Through Grief (2009)

by Ann Hood

From Booklist: How does one recover from the plenary grief of losing a precious five-year-old child? Novelist Hood’s answer is simple: one doesn’t. After her daughter died suddenly from an antibiotic-resistant strep infection, she just moved along with life, at first muddling through days and weeks of hearing but not comprehending the advice of well-meaning friends and family. Next, the grief began to shift from being her primary focus to second place, then into periodic episodes of overwhelming anguish. Hood’s sometimes-too-painful-to-read memoir bares all the raw emotions, from denial to despair to anger, that she experienced. The grief never really leaves, she says; it just stops eclipsing all else. Especially after she took up knitting, a pastime that occupied her mind in such a way that she couldn’t knit and grieve at the same time. Ultimately, she, her husband, and their son moved on and, it seems, finally found their way to a likeness of the happiness they once had.

This is a truly moving review from the LA Times. SOMETIMES IT takes guts to be a critic. So often you feel you have no right to be pronouncing on someone else's hard work and insight. Your whiny little voice wheedles off the page. And every once in a while, the emotions you encounter in a book are so raw -- not sentimental, not artful, just plain raw -- that you can barely keep reading, much less recommend what you're reading to anyone else. "Comfort" is such a book. After you read it, you feel utterly depleted.

You can purchase this book from ABEBOOKS for $0.01 plus shipping. The best buy you will make!

Monday, September 5, 2011

Life, On the Line (2011)

(from Amazon, but I agree) In 2007, chef Grant Achatz seemingly had it made. He had been named one of the best new chefs in America by Food & Wine in 2002, received the James Beard Foundation Rising Star Chef of the Year Award in 2003, and in 2005 he and Nick Kokonas opened the conceptually radical restaurant Alinea, which was named Best Restaurant in America by Gourmet magazine. Then, positioned firmly in the world's culinary spotlight, Achatz was diagnosed with stage IV squamous cell carcinoma-tongue cancer.

The prognosis was grim, and doctors agreed the only course of action was to remove the cancerous tissue, which included his entire tongue. Desperate to preserve his quality of life, Grant undertook an alternative treatment of aggressive chemotherapy and radiation. But the choice came at a cost. Skin peeled from the inside of Grant's mouth and throat, he rapidly lost weight, and most alarmingly, he lost his sense of taste. Tapping into the discipline, passion, and focus of being a chef, Grant rarely missed a day of work. He trained his chefs to mimic his palate and learned how to cook with his other senses.
As Kokonas was able to attest: The food was never better. Five months later, Grant was declared cancer-free, and just a few months following, he received the James Beard Foundation Outstanding Chef in America Award.

Life, on the Line tells the story of a culinary trailblazer's love affair with cooking, but it is also a book about survival, about nurturing creativity, and about profound friendship. Already much- anticipated by followers of progressive cuisine, Grant and Nick's gripping narrative is filled with stories from the world's most renowned kitchens-The French Laundry, Charlie Trotter's, el Bulli- and sure to expand the audience that made Alinea the number-one selling restaurant cookbook in America last year.

This is an amazing story -- a pathography, and much, much more.

Wednesday, July 20, 2011

An Anatomy of Addiction (2011)

“Howard Markel eloquently tells the parallel stories of these two pathbreaking physicians (William Halstead and Sigmund Freud) and how their stories intersect in remarkable and sometimes tragic ways . . . Markel's extraordinary achievement combines first-rate history of medicine and outstanding cultural history.” (from Publisher's Weekly,)

AN ANATOMY OF ADDICTION: Sigmund Freud, William Halsted, and the Miracle Drug Cocaine
By Howard Markel Illustrated. 314 pages. Pantheon Books. $28.95.
NY Times Review, July 20, 2011. Also reviewed in the Sunday Times by Sjerwin Nuland.

Friday, June 24, 2011

Suicide Prevention

Expert on Mental Illness Reveals Her Own Fight. This is an important article on suicide in the June, 23, 2011 NY Times:

"Marsha M. Linehan, creator of a treatment used worldwide for severely suicidal people, has recently "come out" and described her long struggle with mental illness. This reminds one of Elyn Saks' story and the latter's book, The Center Cannot Hold."

The Times article goes on to say: "[A]n increasing number of [seemingly normal individuals] are risking exposure of their secret, saying that the time is right. The nation’s mental health system is a shambles, they say, criminalizing many patients and warehousing some of the most severe in nursing and group homes where they receive care from workers with minimal qualifications."

Read the Times article and perhaps also Elyn Saks excellent book, in addition.

See video of Dr. Linehan from the Times article.

Friday, March 11, 2011

Strange Relation (2011)

by Rachel Hadas

In 2004 Hadas's husband, George Edwards, a composer and professor of music at Columbia University, was diagnosed with early-onset dementia at the age of sixty-one. Strange Relation is her account of "losing" George. Her narrative begins when George's illness can no longer be ignored, and ends in 2008 soon after his move to a dementia facility (when, after thirty years of marriage, she finds herself no longer living with her husband). Within the cloudy confines of those difficult years, years when reading and writing were an essential part of what kept her going, she "tried to keep track… tried to tell the truth."

NPR Interview with R. Hadas

Killing the Black Dog (1997)

by Les Murray

Killing the Black Dog is Les Murray’s courageous account of his struggle with depression, accompanied by poems specially selected by the author. Since the first edition appeared in 1997, hosts of readers have drawn insight from his account of the disease, its social effects and its origins in his family’s history.

Tuesday, March 8, 2011

Nemesis (2010)

by Phillip Roth

This is a lyrical, suspenseful evocation of the polio epidemic that raged in the U.S. Northeast during the summers of the 1940s. It captures the fear and paranoia that gripped the populace. Nemesis recalls Camus' The Plague, but to me is a more direct, impactful book. It focuses on the experience of being in and near the epidemic's eye. Perhaps, it's best to just read it without the benefit of reviews (so as to savor its tone and the story's development). However, if you want a review, here's a link to:

NY Times Review

Saturday, March 5, 2011

Tiger, Tiger

by Margaux Fraguso

From Amazon: "With lyricism and mesmerizing clarity, Margaux Fragoso has unflinchingly explored the darkest episodes of her life, helping us see how pedophiles work hidden away in the open to steal childhood. In writing Tiger, Tiger, she has healed herself of a wound that was fourteen years in the making. This extraordinary memoir is an unprecedented glimpse into the heart and mind of a monster; but more than this, it illustrates the power of memory and truth-telling to mend."

NY TImes Book Review March 6, 2011

This is from the Prologue "I started writing this book the summer after the death of Peter Curran, whom I met when I was seven and had a relationship with for fifteen years, right up until he committed suicide at the age of sixty-six.

"Hoping to make sense of what happened, I began drafting my life story. And even during times I haven’t worked on it, when it sat on a shelf in my closet, I felt its presence in the despair that comes precisely at two in the afternoon, which was the time Peter would pick me up and take me for rides; in the despair again at five p.m., when I would read to him, head on his chest; at seven p.m., when he would hold me; in the despair again at nine p.m., when we would go for our night ride, starting at Boulevard East in Weehawken, to River Road, down to the Royal Cliffs Diner, where I would buy a cup of coffee with precisely seven sugars and a lot of cream, and a bread pudding with whipped cream and raisins, or rice pudding if he wanted a change. When I came back, he’d turn the car (Granada or Cimarron or Escort or black Mazda) back to River Road, back to Boulevard East, and we’d head past the expensive Queen Anne, Victorian, and Gothic Revival houses, gazing beyond the Hudson River to the skyscrapers’ lights ignited like a thousand mirrors, where we would sometimes park and watch thunderstorms.

"In one of his suicide notes to me, Peter suggested that I write a memoir about our lives together, which was ironic. Our world had been permitted only by the secrecy surrounding it; had you taken away our lies and codes and looks and symbols and haunts, you would have taken everything; and had you done that when I was twenty or fifteen or twelve, I might have killed myself and then you wouldn’t get to look into this tiny island that existed only through its lies and codes and looks and symbols and haunts. All these secret things together built a supreme master key, and if you ask a locksmith whether there is a master key in existence that will open any lock in the world, he will tell you no, but you can make a key that will open all the locks in one particular building.

Humbert Humbert penned "Lolita," a novel. Margaux Franuso (a sad, real Lolita) composes a memoir. Life imitates art.

Wednesday, March 2, 2011

The Long Goodbye

A Memoir
by Meghan O'Rourke

Essay about book by Ms. O'Rourke.

From Amazon: "What does it mean to mourn today, in a culture that has largely set aside rituals that acknowledge grief? After her mother died of cancer at the age of fifty-five, Meghan O'Rourke found that nothing had prepared her for the intensity of her sorrow. In the first anguished days, she began to create a record of her interior life as a mourner, trying to capture the paradox of grief-its monumental agony and microscopic intimacies-an endeavor that ultimately bloomed into a profound look at how caring for her mother during her illness changed and strengthened their bond.

O'Rourke's story is one of a life gone off the rails, of how watching her mother's illness-and separating from her husband-left her fundamentally altered. But it is also one of resilience, as she observes her family persevere even in the face of immeasurable loss.

With lyricism and unswerving candor, The Long Goodbye conveys the fleeting moments of joy that make up a life, and the way memory can lead us out of the jagged darkness of loss. Effortlessly blending research and reflection, the personal and the universal, it is not only an exceptional memoir, but a necessary one."

A Widow's Story

A Memoir
by Joyce Carol Oates

From Amazon: "Early one morning in February 2008, Oates drove her husband, Raymond Smith, to the Princeton Medical Center where he was admitted with pneumonia. There, he developed a virulent opportunistic infection and died just one week later. Suddenly and unexpectedly alone, Oates staggered through her days and nights trying desperately just to survive Smith's death and the terrifying loneliness that his death brought. In her typically probing fashion, Oates navigates her way through the choppy waters of widowhood, at first refusing to accept her new identity as a widow. She wonders if there is a perspective from which the widow's grief is sheer vanity, this pretense that one's loss is so very special that there has never been a loss quite like it. In the end, Oates finds meaning, much like many of Tolstoy's characters, in the small acts that make up and sustain ordinary life. When she finds an earring she thought she'd lost in a garbage can that raccoons have overturned, she reflects, "If I have lost the meaning of my life, and the love of my life, I might still find small treasured things amid the spilled and pilfered trash." At times overly self-conscious, Oates nevertheless shines a bright light in every corner in her soul-searing memoir of widowhood. (Feb.) "

NY Times Review.

Monday, January 3, 2011

Twiblings: Annals of Surrogacy

Meet the Twiblings is an article about how four women (and one man) conspired to make two babies born five days apart. Melanie Thernstrom weaves a moving story about the frontiers of reproduction she explored and utilized to have her children.

It will be simpler for her to tell the "twiblings:"
"Once, there was a couple who wanted to have babies. They tried and tried, but no babies arrived, and they were very sad. But then a Fairy Goddonor brought them some magical eggs. She came from a place where it never rains, and she drove a midnight blue convertible and had long golden hair (well, currently short and aubergine). They took the eggs, and the eggs changed into the beginnings of babies, and they gave them to angel women to help them grow. So the angel women stowed the beginning of each baby in their bodies, where they grew and grew like pumpkins."