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      Inside the Dementia
     Epidemic: A Daughter's
     Memoir

     
      One of Alzheimers.net's 2014 Top
      Alzheimer's Books for Caregivers

      Winner of the Memoir category of
      the 2013 Next Generation Indie
      Book Awards

    Winner of a Silver Medal in the Health/Medical category of the 2013 Readers' Favorite Book Reviews (and finalist in the Memoir category)

    Finalist, 2013 Eric Hoffer Book Award for Excellence in Publishing

    Winner of an Honorable Mention in the Life Stories category of the 20th Annual Writer’s Digest Book Awards 

    Finalist, 2013 Indie Excellence Book Awards

    Finalist, 2013 Santa Fe Writer's Project Literary Awards Program, Non-fiction category

     

       

     

     

    Inside the Dementia Epidemic: A Daughter's Memoir shares the lessons I learned over 8 years of caregiving at home and in a range of dementia care facilities. I describe not only what I learned about navigating the system, but how I learned to see Alzheimer's disease differently—not as a "long good-bye," as it's often called, but as a "long hello." Through caregiving, my challenging relationship with my mother was transformed, and I learned to enjoy and nurture her spirit through the last stages of dementia.

    Appendixes share facts about dementia that I wish I had known years ago, such as how to get a diagnosis of Alzheimer's disease; what medications are approved to lessen the symptoms of Alzheimer's disease; lesser-known risk factors for dementia; and possible antidotes. I include my favorite resources for caregivers, my source notes, and an index.

    Inside the Dementia Epidemic: A Daughter's Memoir is available in paperback and hardcover, as an e-book for the Nook and Kindle, and on iTunes.

    Reviews and Testimonials

    Order the Book

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    PHOTOS:

    The photo at the very top of this page is of my mother, Judy, in 2010, smiling up at Suzanne, a massage therapist I hired who specializes in bodywork for elders.  Suzanne massaged her hands, arms, upper back and legs, talked to her, and played music for her.  [photo by Jason Kates van Staveren]

    Right: My mother at her 75th birthday party in 2007, three years after she could no longer live alone. A few days after this picture was taken she fell, fractured her pelvis and needed more care than her assisted living facility could provide. I had to quickly research alternatives.









    In 1996, Judy and her grandson, Andrew, age 1, on the shale beach outside the cottage on the lake in Upstate New York where she lived by herself for 25 years. It's his first visit, and she's showing him the "big lake water" and how to draw on the flat rocks with pencil-shaped pieces of shale. Her worrisome behavior starts around this time, but as her daughter I don't realize what is going on until much, much later.

    Above: My mother, age 74, and I at the cottage in 2006 with her old miniature Schnauzer, Trinka. I can see the stress of those early caregiving years in my face and in my extra weight. Little did I know how much I would learn over the coming years.

     

     

     

     

     

     

     

    Above: Judy, age 79, and me in early 2012 at the nursing home Judy moved into in 2010. Mom lived with advanced Alzheimer's disease and vascular dementia until she passed away in late 2012, but until the end she often shared her lovely smile. 

     

    Join the fight to stop Alzheimer's by 2020:

        

     

    For caregiver support and resources, visit the Caregiver Action Network. (Membership is free if you are a current family caregiver):

                        

        The Purple Angel--a symbol of hope and dementia awareness

    Wednesday
    Aug032011

    Resources

    Memoirs

    These are my favorite memoirs about dementia or caregiving, all from my bookshelf. I hope you will appreciate the authors' strength and honesty, too.


    Can't We Talk About Something More Pleasant?
     A memoir by the New Yorker cartoonist Roz Chast, 2014. Written and illustrated like a graphic novel, but true. Chast was an only child who, like many adult children, found herself caring for aging parents who badly needed help but did not want it. Not an “uplifting” memoir in the traditional sense, but readers are likely to find it heartening and helpful because Chast is brutally honest in her depiction of herself as a reluctant, freaked-out caregiver. Read my full review here.

    Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer's, by Meryl Comer, 2014. Emmy-award-winning broadcast journalist Comer shows us the devastating cost—personal and financial—of caring for loved ones with this progressive disease. Comer is president and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative, a nonprofit which supports awareness, diagnosis and research of the early stages of Alzheimer’s disease, and she is also a co-founder of Women Against Alzheimer’s. Comer’s husband, Dr. Harvey Gralnick, was chief of hematology and oncology at the National Institutes of Health until he received a diagnosis of early-onset Alzheimer’s disease at age 58. Comer’s mother, who also has Alzheimer’s disease, lives with Comer and her husband. Read my full review of her book here.

    Love in the Land of Dementia, by Deborah Shouse, 2013. A short, sweet read that will leave you feeling 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. Read my full review of this book here.

    Leaving Tinkertown, by Tanya Ward Goodman, 2013.  With exquisite detail, honesty and humor, Tanya 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. Read my full review of this book here.

     A Funny Thing Happened on My Way to the Dementia Ward: Memoir of a Male CNA, by Charles Schoenfeld, 2012. Don't let the photo on the cover fool you--Schoenfeld 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.

    All Gone: A Memoir of My Mother's Dementia. With Refreshments, by Alex Witchel, 2012. Although the bulk of this memoir is not about the mother’s dementia but about the author's life with her mother growing up, it’s a beautifully written mother-daughter love story--heartfelt and moving. I recognize the author's years of denial that anything is wrong, and her frustration with many of the symptoms of early cognitive decline, such as her mother's repeating herself or not acting appropriately. Later, the author learns to enjoy her time with her mother despite the disease, to appreciate that her mother listens "with her heart if not her head."

    The Long Goodbye: A Memoir, by Meghan O'Rourke, 2011. O'Rourke helps care for her mother when she dies at a young age of cancer.

    The Long Hello: The Other Side of Alzheimer's, by Cathie Borrie, 2010. 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 records on a tape-recorder 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.

    Keeper: One House, Three Generations, and a Journey into Alzheimer's, by Andrea Gillies, 2009. On a cold, windswept peninsula in northern Scottland, Gillies takes in her mother- and father-in-law. Her mother-in-law is living with the middle stages of dementia.

    The Last of His Mind: A Year in the Shadow of Alzheimer's, by John Thorndike, 2009. Thorndike moves in with his father for the last year of his father's life.

    Being My Mom's Mom: A Journey Through Dementia from a Daughter's Perspective, by Loretta Anne Woodward Veney, 2012. A short but very moving and insightful memoir, full of wisdom and sound advice.

    The Story of My Father: A Memoir, by Sue Miller, 2003. Miller cares for her father who has Alzheimer's disease.

    Mother in the Middle: A Biologist's Story of Caring for Parent and Child, by Sybil Lockhart, 2009. Her mother has Alzheimer's Disease.

    Patrimony: A True Story, by Philip Roth, 1991. Roth cares for his father as he dies of a brain tumor.

    Measure of the Heart: A Father's Alzheimer's, a Daughter's Return, Mary Ellen Geist, 2008. She helps her mother care for her father, Woody, who retains his ability to sing and enjoy music.

    Strange Relation: A Memoir of Marriage, Dementia, and Poetry, by Rachel Hadas, 2011. Hadas's husband is diagnosed with early-onset dementia.

    Do You Remember Me? A Father, a Daughter, and a Search for the Self, Judith Levine, 2004. Her father has dementia. From the flap: "By caring for this needs, she learns to care about and, slowly, to love him."

    To Love What Is: A Marriage Transformed, by Alix Kates Shulman, 2008. Her husband suffers a brain injury.

    The House on Beartown Road: A Memoir of Learning and Forgetting, by Elizabeth Cohen, 2003. Single mother cares in her home for both her baby and her father who has dementia. This is the first memoir my caregiver support group recommended to me back in 2005.

    The Mercy Papers: A Memoir of Three Weeks, by Robin Romm, 2009. A young woman comes home to help take care of her mother, who is dying of cancer. Unflinching and raw, but beautifully written.

    Alzheimer's From the Inside Out, Richard Taylor, Ph.D., 2007. A psychologist, Taylor is diagnosed at age 58 with "dementia, probably of the Alzheimer's type." I wish I had found this book years earlier, as it would have helped me feel more empathy for what my mother may have been experiencing in the early and middle stages of dementia.

    Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's, Diana Friel McGowin, 1994. Diagnosed with early-onset Alzheimer's, McGowin first starts to have serious memory lapses in her forties. A harrowing, honest chronicle of her struggle.

    Love and Other Infectious Diseases: A Memoir, by Molly Haskell, 1990. An early, classic memoir in which Haskell cares for her husband who is "seized by a strange and terrifying illness."

    Heaven's Coast: A Memoir, by Mark Doty, 1996. Doty's partner dies of AIDS.

    An Uncertain Inheritance: Writers on Caring for Family, edited by Nell Casey, 2007. A collection of memoir-like essays by well-known authors.

    The Gifts of Caregiving: Stories of Hardship, Hope and Healing, edited by Connie Goldman, 2002. Not a memoir, but a very moving collection of Goldman's interviews with family caregivers in a variety of caregiving situations.

    The Middle Place, by Kelly Corrigan, 2008. Like me in my book-in-progress, Corrigan is pushed out of a comfortable early adulthood into a second coming-of-age. She's diagnosed with breast cancer and her father with late-stage cancer.

    Telling Tales About Dementia:  Experiences of Caring, edited by Lucy Whitman, 2010. A collection of short memoir-like stories about caregivers' experiences.

    Voices of Caregiving: The Healing Companion: Stories for Courage, Comfort and Strength, edited by The Healing Project, 2009. A collection of stories by caregivers. Part of the "Voices Of" book series. (They also published Voices of Alzheimer's.)

    Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir, by Carol D. O'Dell, 2007. 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."

    Death in Slow Motion: A Memoir of a Daughter, Her Mother, and the Beast Called Alzheimer's, by Eleanor Cooney, 2003. Though I disagree with her description of dementia as "death in slow motion," I recognized many of her feelings about taking on the role of caregiver to my mother, and the crises that ensued as she had to move her mother from place to place. She's also one of the first memoirists to mention memory care facilities.

    Losing My Mind: An Intimate Look at Life with Alzheimer's, Thomas DeBaggio, 2002. In his fifties DeBaggio is diagnosed with early-onset Alzheimer's disease. As he loses his ability to speak coherently, he manages to capture on his computer screen enough of his thoughts to finish this eloquent, haunting book.