Some of Our Favorite Caregiver Books

October 21, 2011

by Ellen Woodward Potts
Co-Author, A Pocket Guide for the Alzheimer’s Caregiver

There are lots of wonderful books out there for caregivers, but it’s hard to know which ones would be worth the read.  We have a large list of references on our resource page.  However, these books are much more inspirational reads than caregiver “how to” manuals. Unless otherwise noted, all these books are widely available from online retailers.

Edie Hand’s The Last Christmas Ride is about familial love, the basis of most caregiver relationships.  This book chronicle’s Edie’s upbringing in rural Northwest Alabama.  On the surface her life would be considered very much like “The Walton’s” or some other family show.  However, unlike the Waltons, Edie’s family had real family problems and she is very honest about those.  Her mother battled depression and her father was always at work, which left Edie, as the eldest child, to care for her 4 younger siblings from a young age.  Edie is honest about all of the feelings she has as a caregiver (guilt, anger, bewilderment, etc.), but all of these are  superseded by the tremendous love she has for her family, and by her faith in God.  When one of her brothers gets cancer as a middle-aged adult, he has no one to care for him, so Edie steps in as primary caregiver to her disabled, chronically ill brother for several years.  During this time, she’s also doing her best maintain her career and be a good mother and wife, a recipe for exhaustion in anyone’s book.  If you are a caregiver, The Last Christmas Ride will validate the wide range of feelings you experience as being perfectly normal.  More than that, though, it is a tale of love that will inspire you (and would be a great Christmas gift!)  For more information about Edie, her radio and television shows, and her other books, go to http://ediehand.com

Embracing Dementia: A Call to Love by Ellen Marie Edmonds “The Heart does not get Dementia.”  This quote really summarizes Ellen Marie Edmond’s philosophy of caregiving.  Embracing Dementia: A Call to Love is the story of Ellen’s caregiving journey with her husband, Frank, who had vascular dementia.  This book will be particularly helpful for caregiver spouses, as Ellen writes about her experiences as a wife grieving the ongoing loss of her soul mate.  How Ellen copes with her grief over “losing” her husband while he is still alive, yet nurtures their relationship in new ways is most inspiring.  Ellen is a devout Catholic with a deep-seated reverence for life, a fact that sustains her throughout her journey.  Ellen has a weekly radio broadcast by the same name on EWTN which can be accessed through her website, http://embracingdementia.com (where you also can purchase her books).  In memory of her husband, Ellen began the Frank Edmonds Dementia Education and Research Fund, a 501c3 non-profit.  On Thursday, November 17th there will be a wonderful evening called “Hearts of Hope” at The Club in Birmingham, AL to benefit the Edmonds Foundation.  For more information, go to http://heartsofhope.org.

The Long Hello by Cathie Borrie is a daughter’s caregiver story, but it’s very much the opposite of most caregiver reads.  I can only describe Cathie’s interactions with her mother as a brilliant attempt to “follow” her mom anywhere she went, conversationally speaking.  The amount of patience this took was unimaginable and Cathie speaks honestly of her frustration, guilt and even anger throughout her mom’s illness.  For instance, Cathie’s brother was murdered when he was a teenager.  In her mother’s mind, Cathie’s brother is still alive.  You can imagine the difficulties this causes.  The book swaps from Cathie’s life many years before, to her current life caring for her mother.  Because it was something of a right-brained read for my left-brained self, the perspective was completely unique to me.  More than any other caregiver book, Cathie shows the need to interact with people with dementia in their world.

Almost Home – How I Lost My Mother Without Losing My Mind: A Faith Journey by Teresa Norris (available at http://teresamnorris.com) is really a journal of a daughter’s experiences in caring for her mother with Alzheimer’s disease.  It’s an honest, day by day account of the frustrations, grief, connections and humor that come along with Alzheimer’s caregiving.  Unlike the previous books I’ve mentioned, Teresa was a secondary caregiver to her mother.  Her brother and father were primary caregivers, while Teresa lived in a neighboring state.  The book touches on the difficulties caused by this secondary relationship, along with the guilt.  As the title implies, Teresa’s faith played a large role in helping her keep her sanity through this process.

Learning to Speak Alzheimer’s by Joanne Koenig Coste is, quite honestly, my favorite “how to” caregiver book, but it’s couched in terms of Coste’s story.  When Coste’s husband was in his early 40’s and she was pregnant with their fourth child, he got Alzheimer’s disease.  It was the early 1970s and there were no resources, no Alzheimer’s Association, no books, nothing.  She basically had to develop her own caregiving methods.  If you can imagine trying to keep a toddler and a grown man with early onset Alzheimer’s from wandering out of the house and getting into traffic, this was her world.  She developed an entire theory of “Habilitation” therapy and has implemented it in facilities throughout the country with great success.  Her methods will work for you, too!

For more resources, please see our resource page at http://dementiadynamics.com/resources/.

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