An Uncertain Inheritance: Writers on Caring for Family – A Very Special Book About Family Caregiving

I am very grateful to my friend Mary Shomon for telling me about “An Uncertain Inheritance: Writers on Caring for Family.” “I laughed; I cried: I couldn't put it down,” is how Mary described the book. She asked if I’d like to review it for HonestMedicine. When I said yes, she contacted Sharyn Rosenblum, the book’s wonderful PR person at Harper Collins. In a few days, I had a copy.

“An Uncertain Inheritance” is one of those truly memorable reads. It is, as its press materials state, “an eloquent collection of essays,” in which some famous (and some not-so-famous) writers “reveal their experiences in caring for family members through illness and death.”

But this description just scratches the surface. It is much more.

This book is like those wonderful short story anthologies I once loved so much that introduced me to great literature and magnificent writers, and led me to explore their longer works more fully. It was these anthologies that gave me my love of literature.

“An Uncertain Inheritance” contains some of the most wonderful and powerfully written short essays about love, and about taking care of family members at their most vulnerable -- whether they be parents, children, dear friends or siblings.

I’d like to tell you about a few of my favorite selections, in hopes that they will entice you to buy and read this very important book.

FIVE ESSAYS FROM THE BOOK:

• Abigail Thomas’s “The Day the World Split Open,” starts out with her husband being hit by a car, and goes on to provide just about the most touchingly accurate portrayal of what a brain injury is like, and how it affects both the injured person himself, and the entire family -- especially his wife. (I related to this one very personally.)

• I also loved Ann Hood’s selection, “In the Land of Little Girls,” in which she describes, in a tightly written 13 pages, the illness and quick death of her beautiful 5-year-old daughter Gracie. Ms. Hood’s horror at what happened to her daughter, as well as at the harsh treatment she and her family endured in the hospital, and her total devastation at Gracie’s death -- all within the space of 36 hours -- are riveting.

• Eleanor Cooney’s “Death in Slow Motion,” about her mother (writer Mary Draper’s) decline into the netherworld of Alzheimer’s Disease, is so beautifully written and so touching that I couldn't keep myself from going online to learn more about Mary Draper.

(At the end of this review, I’ll include my own “Reading List,” which I developed from my research about these authors’ works.)

And my two favorites:

• In “Don’t Worry. It’s Not an Emergency,” Susan Lehman, who is a lawyer in real life, manages to paint an absolutely dark and charmingly arresting portrait of her mother, who must have been quite something in her day: She was once Eleanor Roosevelt’s assistant. But now, in her dotage, she weighs nearly 300 pounds, and is an absolutely maddening person -- at least to her daughter. She smokes, eats copious amounts of candy and has a voice that is like a “blast.” But, Lehman’s children absolutely adore their grandmother, calling her -- of all names! -- “Doodles.” Doodles ends up living in the same building, on the 8th floor. The children can’t wait to enjoy their daily visits with Doodles. This story, with its huge Saturnalian anti-heroine, reminds us that caregiving, indeed, can have many absurd and fun aspects to it.

• But perhaps, because it reminded me of my own experiences as caregiver to my husband Tim, for me, the most touching story of all was cartoonist Stan Mack’s (“Stan Mack’s Real Life Funnies”) “The Elephant in the Room,” abridged from his very tender book “Janet and Me.” I loved this selection so much that, immediately after reading it, I bought the book and devoured it, as well. What makes this story so beautiful is that it combines all the complex and conflicting elements that I remember so vividly that are such an important part of being the caregiver to the person who is the love of your life: the tenderness, the fear, the rage, and the anger at a heartless medical system that turns a deaf ear when people are at their most vulnerable.

Sadly, I know that, despite the excellent reviews “An Uncertain Inheritance” has received in publications like “People Magazine” and “US News and World Report,” it most probably won’t be a best seller, because caregiving isn’t a “sexy” topic. But it should be. 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.

And what better introduction to the topic of caregiving than this wonderful book?

SUGGESTED CAREGIVER BOOKS, ARTICLES AND WEBSITES RELATING TO THE AUTHORS MENTIONED IN MY REVIEW OF “AN UNCERTAIN INHERITANCE”:

ABIGAIL THOMAS, (“The Day the World Split Open”). A Three Dog Life is a book about Ms. Thomas’ husband Richard’s accident and subsequent brain injury, and how they both dealt with it. One of my favorite reviewers, Donna Chavez, called the book “exemplary,” and writes, “Thomas has elevated what could be, at best, an overemotional sermon or, at worst, a grim romp in self-pity to a high plain of true inspiration.”

ANN HOOD (“In the Land of Little Girls”). Ms Hood has written a novel, The Knitting Circle, which grew out of the experience of losing her daughter Gracie. And in her essay, Now I Need a Place to Hide Away, published in the "NY Times," Ms. Hood writes about Gracie’s love for the Beatles’ songs, and how they comforted her when she was in the hospital, dying. Thankfully, this very touching essay is available online.

ELEANOR COONEY (“Death in Slow Motion”), also wrote a book with the same title: "Death in Slow Motion: A Memoir of a Daughter, Her Mother, and the Beast Called Alzheimer's." The essay grew out of a Harper’s Magazine article of the same name; and she expanded the article and essay into this book -- also with the same title. The book’s website contains a great deal of information about the author’s mother, writer Mary Draper, on whom all three (article, essay and book) are based. Of special interest: the wonderful photos.

STAN MACK – “The Elephant in the Room.” As I noted in my review of “An Uncertain Inheritance,” this essay was excerpted from the wonderful book, “Janet and Me: An Illustrated Story of Love and Loss.” For me, this is, without a doubt, THE most touching book about love, loss, caregiving, friendship, etc., etc., etc. I have ever read. I can’t recommend it more highly. In addition, I hope you'll also want to read this interview with Stan Mack, about his and Janet's experience with cancer and caregiving.

Finally, there are two other books about caregiving that contain some wonderful true stories and lots of information about how little support (both financial and emotional) is given to family caregivers. I’d like to recommend them here:

"A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard," by Suzanne Mintz, founder of the National Family Caregiver Association (NFCA). Ms. Mintz is a driving force in the movement to get legislation passed that will aid family caregivers. The NFCA website contains lots of great information.

"Always on Call: When Illness Turns Families into Caregivers" is edited by Carol Levine, a family caregiver herself, and also Director of the Families and Health Care Project of the United Hospital Fund in New York. Ms. Levine is another important person in this arena; there is more information about her on the United Hospital Fund's website.

Comments

[Kathy Hatfiled]

My name is Kathy, and I am the primary caregiver for my 79 year old Dad who has Alzheimer's disease and lives with me in North Carolina.

I am writing a daily blog on my Alzheimer's caregiver website that shows the lighter side of caring for someone with dementia.

We have also added over 100 pages of resources for caregivers that we have gathered over the three years Dad has lived here.

Please pass this link along to anyone you feel would enjoy it.

http://www.KnowItAlz.com

Thanks,
Kathy

[Steve Keyser]

Hi Julia,

I wanted to thank you for your website. Lots of great information that people really need to know.

I also wanted to share with you two websites you may find of interest:

www.beyondhealth.com – Beyond Health is a Nutritional Consulting company. There’s lots of wonderful information on this site about how to get well and stay well without using drugs or surgery. One feature I enjoy is dozens of holistic health articles found at http://beyondhealth.com/articles.aspx

I highly recommend the book Never Be Sick Again http://beyondhealth.com/Never_Be_Sick_Again-prod9.aspx

www.tped.org – The Project To End Disease – created by Raymond Francis, this non-profit is designed to educate people holistically so they have the information they need to be able to take a more active role in their own healthcare decisions (instead of leaving those decisions exclusively to western medicine, the HMOs, and the pharmaceutical industry.

Wishing you all the best,

Steve Keyser

(800) 250-3063

[Vernita Hill]

Despite the availability of information about caregiving and the many light-hearted stories about it, I have to admit I'm still a little worried about being put in that position. I hope that never happens, obviously, but I'm not even sure if I could handle it if it became a reality. I'm contemplating going for some home health care training, both to develop another skill and to be able to cope with a family member's needs.

http://www.medifecta.com/ has some interesting educational items, both in book and video format. Good place to start I think.

[Vino Nebbiolo]

Good post, but have you thought about An Uncertain Inheritance: Writers on Caring for Family – A Very Special Book About Family Caregiving before?

[sudden memory loss]

I find this quite interesting, my uncle suffers from Alzheimer's and well is been difficult for the family. Great post