Published August 15, 2013.
Even very focused memoirs end up tackling a variety of topics. This is true of Tanya Ward Goodman's 2013 memoir, Leaving Tinkertown.I chose to read it because it fits in with a category of books that I have labeled "dementia memoirs." I value reading about the challenges and opportunities of hanging onto a relationship affected by Alzheimer's or another form of dementia.
Goodman focuses her memoir around the six years that her father, Ross Ward, lived with early-onset Alzheimer's disease.
Her account discusses the symptoms, diagnosis, and progression through the major stages of the disease. It serves as a valuable road map for caregivers. Even though there are some similarities from one dementia memoir to another, each account shows how the journey is unique to each person and their loved ones.
In the pages of her memoir, Goodman introduces us to her nonconformist father who is driven to create. He has spent decades drawing, painting and sculpting. He spent some time on the road, painting for carnivals. However, his major work took form as a miniature town dubbed "Tinkertown." Ward carved the inhabitants and set up a roadside museum that is still in operation in New Mexico, just north of Albuquerque.
While still in midlife (his lat 50s), Ross's memory changes, and he adopts new, outlandish behavior. Nevertheless, he continued to love his wife, children and his dog--Carla, Tanya, Jason and Radar, respectively. He had no reservations about speaking his mind, putting his own creative spin on how he cussed people out when they stood between him and the open road or a bottle of beer.
His family soon discovers that another family member--Ross's mother Rose--also has dementia. She's not quite as energetic as her son, so her journey through the disease isn't quite as dramatic. Nevertheless, everyone has to adjust to Rose's change in cognition and behavior as well.
What I admired the most was seeing how persistent Ross was in his drive to create. During his last few years, he continued to add sculptures to Tinkertown, and he even made his own body a canvass for self-expression. He also preserved some self-awareness of his disease for a pretty long time. He responded with a mix of sadness, anger, bemusement and even acceptance.
But as with any person with dementia, the journey doesn't just involve a single individual. All loved ones are affected. As the disease progresses, each relationship has to be renegotiated according to new levels of cognition and new sets of behaviors. His wife, Carla (whom Ross calls "La,"), must curb his drinking, take away his keys and keep him from wondering down country roads. His son, Jason, has to find away to connect with his father after years of being detached.
And Ross's daughter, Tanya, has to decide how to balance her needs for independence from her father and a love for her boyfriend with the need to preserve her relationship with her beloved father and support him by offering help as a caregiver.
Even though Tanya and her father Ross are able to preserve many of the elements of their previous relationship, the disease requires them both to make adjustments to their new reality. There is a clear mixture of love and pain in the pages of this memoir. As Goodman writes, you can see her inheriting her father's gift of creativity. Instead of working with paint, wood, bottles or rocks, Goodman collects memories and fashions them into a monument dedicated to her father's life--and to their life together on the road and in Tinkertown.
Whether or not dementia affects someone in your family, Goodman reminds us that life brings change. But we can respond with a mix of constancy and flexibility so that relationships endure.
Here is the book trailer, which includes a number of photos of Ross--with various loved ones--throughout his lifespan.
Related:
Books about Dementia
Movies Depicting Alzheimer's Disease