Many of us find that sharing our stories helps increase the joy in our lives as well as lessen the pain. As a long-time family caregiver, I know firsthand how isolating caregiving can be. Writing "Minding Our Elders: Caregivers Share Their Personal Stories," was one way for me to help shine a light on what caregivers experience and break through that isolation. Caregiving sites such as OurAlzheimers.com provide another way to provide support so that people who care for vulnerable elders understand they aren’t alone.
As we spotlight Alzheimer’s disease this month, we’ll continue to connect with caregivers who know personally how difficult the caregiving road can be. Below are two excellent examples of books written by women who want to help others by relating their own caregiving stories.
Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia
Kate Whouley grew up in an unusual, unstable home with a gifted but eccentric mother. The mother and daughter had an often strained relationship that is explored in her beautifully written memoir.
When the single, childless Whouley discovers that her mother has Alzheimer’s disease, she realizes that her life is coming full circle. As a child, she felt she needed to take care of her unstable mother. Now, as an adult, she will once more take on that role. Only this time, her mother is embarking on her last journey, and Whouley consciously chooses her role as a caregiving adult.
"Remembering the music," is a hopeful book, in that it sketches the rebirth of this mother/daughter relationship. The memoir illustrates that while watching the cognitive and eventual physical decline of AD is heartbreaking, emotional healing from historical family issues is possible.
"Alzheimer’s has been called ‘the long goodbye,’ because you lose the person little by little over a period of years. I thought that was awful, tragic. But now I am beginning to believe there is a new possibility even in the midst of loss. In forgetting, we are offered an opportunity to forgive."
Throughout the years of her mother’s AD, Whouley grows as a person and a caregiver. She uses her inventiveness, her humor and her imagination as she accompanies her mother along the ever darkening path toward end-stage Alzheimer’s.
During these years, Whouley learns to do more than forgive her mother for her lack of parenting skills. She learns to love her mother, and in the end, deeply mourn her mother’s passing.
"Remembering the music" provides a story that is likely to be enjoyed by nearly any reader interested in elder care. However, the memoir should be especially interesting - and even inspiring - to people who will be, or have become, caregivers to their less than ideal parents.
"Remembering the music," published by Beacon, is available in bookstores and online.
"Life Lessons from a Baker’s Dozen: 1 Mother, 13 Children, and their Journey to Peace with Alzheimer’s"
"Life Lessons," written by Kerry Luksic, is also a memoir about a daughter and her mother’s Alzheimer’s disease. However, this daughter is from a large Irish Catholic family. This mother was the personification of nurturing motherhood. While this memoir is, as any memoir about Alzheimer’s disease must be, one of loss, it’s also a story that celebrates a life well lived.
Luksic uses love, humor and wonderful storytelling skills to show the reader what it’s like to belong to an enormous family that could be a modern "Cheaper by the Dozen." Only this story ends with the increasing cognitive decline of the woman who held this family together.
"Mothers, by their innate nature, are the glue of most families. Mom is the Lonergan "glue.""She’s “home" for all of my brothers and sisters. Knowing this, I recognize the blessing that Mom has been there for me throughout all of the major milestones of my life”"
"Life Lessons" is ideal reading for those who wonder what shape their family will take when the centerpiece of that family is gone. Luksic already has to cope with her mom not recognizing her. Yet her mother (at the publication of the book) is still alive. She knows the family will - must - adjust to their mother’s passing, just as the family has adjusted to their mom’s cognitive decline.
"Life Lessons," published by Unlimited Publishing LLC, is available in an eBook format as well as in print. The book can be found at http:www.unlimitedpublising.com/Luksic. Ten percent of the author’s royalties from the paperback will go to AD research projects.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.