Customer Reviews

Uncertain Inheritance, An: Writers on Caring for Family

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As someone with a parent with a terminal illness this book was of great comfort for me. I felt as though others knew my private thoughts and had the nerve to write them down. This books means so much and I would recommend to anyone who is caring for someone else, being cared for or is in the midst of losing someone they love.

As a writer and sole caregiver for my 84-year-old mother who has Alzheimer's, "An Uncertain Inheritance: Writer's on Caring for Family," edited by Nell Casey piqued my interest.

Writers wrote the 19 essays gathered for this book, but more importantly, these essays were written by caregivers and those being cared for themselves with a no-holds-barred brutal honesty.

Under my currant circumstances, I thought this book might bring me to tears with each story, but I was wrong. It's that powerful honesty written eloquently in all its vulnerability that will grab your heart, reduce you to tears, cause you to chuckle, and in some cases infuriate you, as it did me.

These stories weren't fiction fantasies or pretty pictures of caregivers being selfless martyrs, as some may think, and the patients weren't patiently waiting to die; these were true accounts of people--parents, children, spouses, friends, and siblings--who while living life, being all they could be, were stricken with illness or injury and needed help.
Caregiving for the chronically or critically ill is not a pretty subject. These writers opened their homes, hearts, and minds and let out every ounce of love, fear, frustration, and anger and shared the trials and tribulations they felt during their caregiving journey.
Each essay had its own merits, story, and sense of need.

Helen Schuman in her essay, "My Father the Garbage Head," writes with poignant, heartwarming honesty of her father's heart attack and strokes which led to his death.

Sam Lipsyte, in "The Gift" speaks openly and humorously about his drug abuse, how it wrecked his life, and while he "cleaned up his act" his mother let him move back in. Shortly after, his mother tells him and his sister that her breast cancer had recurred. He handled the news with a matter-of-fact acceptance that he would be her caregiver.

Ann Harleman's "My Other Husband" describes her husband's illness and the grueling bleakness and burden of MS. Her heartfelt love showed in each of the slices of their life she describes before MS took over. Her friend told her, "With chronic illness, a lot of times the caregiver ends up dying first. Out of stress and exhaustion. I've seen it." After years, frustrated and worn, she finally decided to place him in a nursing home "for his sake and hers."

Eleanor Cooney's essay "Death in Slow Motion" was formed from a former Harper's Magazine article and later became a book under the same name. The eloquently written story is about her mother, writer Mary Draper, and her decline with Alzheimer's Disease. Cooney shoots from the hip with her openness of dealing with Alzheimer's and the dilemmas and life interruptions her and her mate dealt with after moving her mother into an apartment close to their home. After just a few short months of her mother's arrival, Cooney find herself in an argument with her mate, who bolts out of the house to clear the air, and she stands in the dark with her "heart pounding with fury, sorrow, anguish." She speaks of her mother's lack of memory, repetitive conversations, questions, and how people with dementia "become unappetizing."

Susan Lehman, in "Don't Worry. It's Not An Emergency," tells a grim, yet capturing story of her nearly 300-pound mother, who spoke with a "thunder" voice, or "blast," sat and ate sorbet, doughnuts, huge amounts of candy, and smoked cigarettes all day. Lehman moved her mother from her home in Ohio to live on the 8th floor of her apartment building so she could keep a closer watch on her. Her three children adored their grandmother and visit her daily. The story of her mother's illness is not the least bit funny, but Lehman manages to spin the tale with utmost charm and humor.

"In the Land of Little Girls" Ann Hood's 36 hour experience with her 5-year-old's illness and quick death was appalling in many ways. Hood describes not only the illness and death, but also her devastation at Gracie's death and the horrible treatment she and her family were subjected to in the hospital.

"An Uncertain Inheritance" may never become a best seller due to the subject matter, but it should be a book that each and every human being should read and realize the reality it speaks about; they too may face the need to be cared for, or need to care for someone else. I only hope the readers have families like these who take that responsibility seriously regardless of time-consuming needs, the love, the fear, the frustration, the anger, and the rejection that may be a result from it.

I picked this book up out of curiosity, wondering if it would be helpful for caregivers, which it is, but more than that it contains wonderfully written stories that kept me reading just because they were well told and full of insight. Along the way they provide insights into how hard it can be to be cared for, even if you desperately need to be, and how specifically difficult it can be to care for different kinds of health problems--and yet, often, how rewarding. A very human collection and one I think all health professionals, including all medical and nursing students, should read. A very good read, and now I shall look for Nell Casey's anthology on depression.

Having a mother whose dementia led her to be infinitely repeating memories from long ago, I was touched and comforted by Ann Harleman's tale of caring for her husband juxtaposed against her early memories of dancing naked with him in the woods. My Mom's recurring memories were of her father's kindness in driving her to school as a child, or of coming back to a beloved vacation home and finding it empty and the windows open. Nell Casey's book brings out our complex compassion and chagrin at finding a beloved family member's mind increasingly empty. Thank you, Nell, and her wonderful contributing authors.

All of us at some point in our lives will need to confront the issues written about in this eloquent collection -- whether it's our parents, our spouses, our siblings, our friends, or even ourselves. The writers here tackle the subject with intimacy, poignancy, grace...and a great amount of courage.

There are stand-outs for me in this collection: the writer Helen Schulman asking her father, "We all love you, we still have fun together, we still can enjoy one another, does any of that help at all?" Her father's reply: "No, you and your love don't help me." As a daughter myself trying to tackle my mother's depression after my father's death, this line really resonated.

Then there's Eleanor Cooney's remarkable essay, "Death in Slow Motion", about her mother's descend into Altzheimer's disease and the toll it takes on her -- unflinchingly real, not at all flowery, straightforward and raw. Or Ann Hood's essay "In The Land of Little Girls", about the death of her five-year-old daughter...which broke my heart by the courage it took to go back to those emotions and write it so perfectly. And Amanda Fortini's "The Vital Role" about her own debilitating tropical illness and her symbiotic relationship with her caregiver: "a story that arose from a perfect confluence of needs: one person's desperate need to be cared for and another's equally urgent need to care."

I could go on and on about these gems, all focusing on the most elemental of needs -- connection, intimacy, loss, courage. This is an important book, and I recommend it wholeheartedly.

"An Uncertain Inheritance" is a most wonderful book; I simply can't recommend it highly enough! It contains some of the most powerfully written short essays about taking care of very ill family members at their most vulnerable -- whether they be parents, children, dear friends or siblings.

I first read "An Uncertain Inheritance" several months ago, when I was sent a copy to review for my website, Honest Medicine. I loved it from the first page to the last. Among my favorite essays are those by Ann Hood ("In the Land of Little Girls"), Eleanor Cooney ("Death in Slow Motion"), Abigail Thomas ("The Day the World Split Open") and Susan Lehman ("Don't Worry. It's Not an Emergency"). But for me, the most touching true story of all was cartoonist Stan Mack's "The Elephant in the Room," abridged from his very tender book "Janet and Me," also available on Amazon.

I realize that, despite its uniformly excellent reviews, "An Uncertain Inheritance" probably won't be a best seller, because caregiving isn't a "sexy" topic. But it should be a best seller. As former First Lady Roselynn Carter has been quoted as saying, "You either are a caregiver, have been a caregiver or will be a caregiver." That's each and every one of us.

I hope that everyone who reads the wonderful reviews this book has received will buy it!

Julia Schopick
www.HonestMedicine.com

This is a wonderful case book for caregivers. Many different situations are included and the essays are thoughtful and well written. It's a must for all those involved in such cases, including health and psychological problems. I came away with many ideas to help in my own caregiving.

fwt

The variety of emotions and experiences in this beautifully written and profoundly felt collection covered about 80% of my gifts and disasters during my 12 years of 24/7/365. It's wonderful when we can read that others share our sorrows and joys while putting careful and caring words and analysis to them. New Wave CareGivers are not your father's Buick anymore.

Most of us are amateurs in caring for ill people. As one reviewer wrote, the burden of doing so "is apt to descend upon us like a blow from fate, stunning and unforeseen. ... [Then] something cracks open -- a father or a friend gets cancer, a mother succumbs to Alzheimer's, a husband has a terrible accident, a child dies -- and what Virginia Woolf once called "extreme reality" floods in." Any one of us can find ourselves unexpectedly tested to the limits of our endurance.

In number terms, there are 30 million caretakers in this country, and of course at least 30 million patients. As our population ages, both numbers are sure to grow, and the number of patients will undoubted grow faster than the number of caretakers.

These 19 people have written honest accounts of their experiences. The essays will help anyone understand the possible tests to their own endurance: the blow may happen to you as a caretaker or as a patient -- in either event, it will help to be as prepared as you can be.

Caretakers in this book describe the burden as "a black hole of time and energy," a "Black Balloon," "our own little prison," "Planet Autism" and "this unfamiliar country with different weathers, different rules." The caretaker's love is often meaningless; "You and your love don't help me," Helen Schulman's father says. "How could this be? How could this endless reservoir of affection and attachment and respect that I felt for this man prove so powerless, so worthless?"

Dr. Jerome Groopman finds that when a friend is diagnosed for cancer, "for the first time in my career I had reached my limits as a treating physician... [Now I'm only a] physician once removed."

Many caretakers can't escape at all. Scot Sea, the father of a severely autistic 15-year-old girl, describes the daily routine as "just the same scene from the same interminable clip on the late show from hell". He has contempt for those "New Age pests, overdosed on media mythology," who tell him "that being the parent of an autistic child is a blessing." Nevertheless he continues to take care of his daughter.

Helen Schulman echoes the thought: "I think that people like to believe there is a reward in the end for caregiving. There were no rewards."

So does Ann Harleman: "MS is something that goes on happening .... Something huge and black that descends slowly and inexorably and surrounds you ... Bruce and I have christened it the Black Balloon. To anyone who sees me ... I seem to be in their world, the world of the well. Going about my work, going about my life. But, actually, I am inside the Black Balloon with Bruce."

Eleanor Cooney writes of reaching her limits: "I felt hard and mean and full of sorrow all at once, and it drove me truly mad. Drove me, in fact, to drink." She moves her mother into an assisted living center, who finds her too "high maintenance" for the staff to handle. With her mother back home, she asks" "What would you do? I'm still waiting for the answer."

Abigail Thomas cares for her brain damaged husband: "Sometimes I feel as if I'm trying to rescue a drowning man and I only have time to rise to the surface for one gasp of air before I go back down again. There is an exhilaration to it, a high born only partly of exhaustion, and I find myself almost frighteningly alive."

Ann Harleman writes that her marriage improved when her husband was moved to a nursing home: "I'm no longer his physical caregiver, I'm no longer implicated in his illness. ... Because our bodies don't connect, our hearts can."

There are essays here by Andrew Solomon, Amanda Fortini and Julia Glass discussing the patient's perspective: "the helplessness of surrendering to another, the paradox of both wanting attention and not." No one speaks for the patients who have no one to be their caretaker, an increasingly large group of people. And, you may find some essays weak, too light hearted or too New Age or even too self indulgent.

My personal advice: don't judge others too harshly. Sometimes the very best that someone can do is far below your own standards. Each of us has to face these challenges, whether caretaker or patient in our own way. It is very easy to criticize how others face their challenges, but if this book does nothing else, it should convince the reader that there is no "right way".

Robert C. Ross 2008

Both my husband and I thoroughly enjoyed this book. My mother is in a nursing home and has dementia.