There’s a growing tidal wave of information and perspectives on Alzheimer’s and dementia caregiving – some of it useful and interesting, some not so much!
Former caregiver and author Martha Stettinius and I share some of our “top reads” in the memoir category.
1. Passages in Caregiving: Turning Chaos into Confidence
Gail Sheehy, 2010
Me: I inhaled Sheehy’s earlier Passages and Pathfinders and am in the process of doing the same with this part memoir, part how-to-make-the-experience-more-joyful book on caregiving. Sheehy lost her husband to cancer; this book is about the journey through their last chapter together. Lots of stories, loads of tips, easy to read. My copy is already full of underlines, tick marks and notes in the margins…
2. Love in the Land of Dementia
Deborah Shouse, 2013
Stettinius: A short, sweet read that left me feeling both hopeful and inspired. Not only is Shouse a talented writer, but she shows us in simple but beautifully-wrought scenes how she came to discover small ways each day to enjoy her mother’s company despite her mother’s advancing dementia. To read my full review of this book, click here.
3. Inside the Dementia Epidemic: A Daughter’s Memoir
Martha Stettinius, 2013
Me: One of the best Alzheimers dementia memoirs I have yet to read. While other best sellers left me uninspired, I looked forward to sitting down with Stettinius and her Mom every night and learning more about their personal journeys. Many of the vignettes resonated so strongly with me that I found myself nodding in agreement, laughing and crying all the way through. (More with Stettinius video interview here)
4. The Long Hello: The Other Side of Alzheimer’s
Cathie Borrie, 2010.
Stettinius: A lyrical, poignant story of how Borrie cares for her mother for seven years. Though her mother has Parkinson’s and Alzheimer’s, Borrie describes her as “one hundred percent of who she is.” Borrie writes down or tape records their conversations over these years. I read this beautiful book in one sitting. It reminded me so much of my own conversations with my mother as her language has grown more elliptical, and of the mixed emotions we often feel as caregivers.
5. Dancing with Rose: Finding Life in the Land of Alzheimer
Lauren Kessler, 2007
Me: This was the first book I read on Alzheimer’s and caregiving. To better understand Alzheimer’s (from which her mother had died), Kessler takes a job as a bottom-of-the-rung caregiver at an “memory care” facility where she learns lessons that challenge what we think we know about the disease and what really happens in such facilities. I’m reading it again.
6. A Funny Thing Happened on My Way to the Dementia Ward: Memoir of a Male CNA
Charles Schoenfeld, 2012
Stettinius: Schoenfeld, a retired FedEx driver, has written a touching and respectful memoir about caring over seven years for the residents of a nursing home. It’s refreshing to read the perspective of a CNA, and he writes beautifully about his fondness for each resident.
7. Still Alice
Lisa Genova, 2007
Me: a fictional memoir narrated by Alice Howland, a celebrated Harvard professor (and mother of three grown children) who at the height of her career notices forgetfulness creeping into her life. The author, who is neuroscientist, imagines what it must be like for the dementia sufferer as she quite literally loses her mind. Fascinating and sometimes a little frightening, the story is full of insights into the disease from a “patient’s” perspective.
We hope you are as inspired by these books as we have been!
Susan Macaulay is the creator and curator of My Alzheimer’s Story. Susan also created and curates AmazingWomenRock.com and SheQuotes.com; she blogs about things other than Alzheimer’s disease and dementia at AmazingSusan.com
Martha Stettinius is the author of the acclaimed “Inside the Dementia Epidemic: A Daughter’s Memoir.” She was a “sandwich generation” caregiver for her mom, Judy, who had vascular dementia and probable Alzheimer’s disease, and who lived with Stettinius, then in assisted living, a rehab center, a “memory care” facility, and a nursing home. Stettinius blogs and consults for www.caregivers.com and www.eCareDiary.com; her blog and book website are at www.insidementia.com.
My Alzheimer's Story 
There is a widely held misconception in the African American community that the Alzheimer’s disease is mostly a white disease. This is not only a false notion, it is a view fraught with danger for black people. There is a terrific book by author Will Gibson that dispels this falsehood. ESTELLA & SYLVIA, while a novel that tells a warm, loving family story, deals with many of the issues and challenges regarding Alzheimer’s.
As Frances Blake, a book lover who enjoys a good story while caring for her sick mother, says about ESTELLA & SYLVIA: “This is one of the most unique family stories I’ve ever read. I found myself rooting for the whole family. It also helped me as a caregiver and helped my friends understand what I was going through. Most important, my friends enjoyed it immensely as good fiction.”—
Estella & Sylvia
LikeLike