Former caregiver and author Martha Stettinius and I dive back into the growing tidal wave of information and perspectives on Alzheimer’s and dementia caregiving with six more top reads in the memoir category (the first seven are here).
1. Leaving Tinkertown
Tanya Ward Goodman, 2013
Stettinius: With exquisite detail, honesty and humor, Goodman describes her struggle to come to terms with her father’s early-onset Alzheimer’s. I highly recommend this book for any reader, not just those who have a loved one with dementia. To read my full review of this book, click here.
2. The Majesty of Your Loving: A Couple’s Journey Through Alzheimer’s
Olivia Ames Hoblitzelle, 2008
Me: I like this book because of its positive and uplifting tone, as well as the spiritual (not religious!) orientation. The author and her husband have a background in psychology, Buddhist meditation, and the wisdom traditions, which makes the book unique in the genre. Also, I enjoyed the “self-help” section with reflections, suggestions, and seed thoughts at the end of each chapter.
3. Strange Relation: A Memoir of Marriage, Dementia, and Poetry
Rachel Hadas, 2011
Stettinius: Young-onset (or “early-onset”) dementia seems to be a particularly devastating type of dementia, especially for the person who mourns the loss of her partner through years of “living grief.” In “Strange Relation,” Hadas’ husband is diagnosed with early-onset dementia at age 61, possibly frontotemporal dementia (which accounts for approximately 20-50% of dementia cases before age 65). Hadas cares for her husband at home until he has to move into a memory care facility. She describes her husband as “an increasingly ghost-like non-presence,” “barely present here and now.” The pain of those years is tempered and transformed by Hadas’ use of poetry, her lyrical self-reflection, and her honesty.
4. Miles from Home: A True Story of the Choices That Define Us
Colleen Lanier, 2012
Me: This is a interesting first-person account of a cross-country journey undertaken by the author, her former significant other and his dying father and Alzheimer’s mother, and what finally happens when the four arrive at their destination. It is tremendously authentic in the telling of an unusual journey and the complex relationships of the people making it. Well worth the read.
5. The House on Beartown Road: A Memoir of Learning and Forgetting
Elizabeth Cohen, 2003
Stettinius: A poignant, poetic memoir in which a single mother with a toddler cares for her father in her home, watching her daughter learn and grow as her father forgets. When I joined my Office for the Aging’s dementia caregiver support group nine years ago, this was one of their favorite books. Cohen’s life as a “sandwich generation” caregiver is unremarkable in its tedium, but she’s such a careful observer and talented writer that the swirl of confusion, emergency, and exhaustion that is her life transforms into something else–into love and grace and appreciation for the simplest moments.
6. Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
Carol D. O’Dell, 2007
Stettinius: O’Dell cares for her 89-year-old adoptive mother, who has Parkinson’s and heart disease, in her home with her husband and two children. I love her humor. Speaking of the book Tuesdays With Morrie, for example, in which Mitch Albom interviews his dying professor, O’Dell says, “‘Tuesdays, my foot…The real story is the wife or the daughter or son–whoever opens the door every Tuesday…It’s the family who lives the story. Ask them what they’ve learned; they’re probably too tired to tell you.”
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 critically-acclaimed book “Inside the Dementia Epidemic: A Daughter’s Memoir.” Martha was a “sandwich generation” caregiver for her mother for 8 years. Her mom, Judy, who had vascular dementia and probable Alzheimer’s disease, lived with Martha, then in assisted living, a rehab center, a “memory care” facility, and a nursing home. Martha blogs about caregiving for www.caregivers.com and is a dementia expert for www.eCareDiary.com. She earned an M.A. in English Education from Teachers College, Columbia University, and lives in Upstate New York with her family. Martha’s blog and book website is 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
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