An Unexpected Journey
Our journey with Alzheimer’s disease started in different places. Ellen’s began in the early 1970’s with her maternal grandfather, George Chapman, who always had been able to keep the wholesale and retail prices, stock numbers and inventory calculations for their Western Auto Store in his head. It concerned him, although it concerned no one else, when he noticed he was not able to do that anymore. Things progressed with his memory issues to the point where he and Ellen’s grandmother had to sell the store. The local doctors couldn’t diagnose him and the family still had hope that he would improve. Of course, prior to the diagnosis of Alzheimer’s disease, denial was still possible for the family and deny we did. After a trip to a specialist at Emory University, no denial was possible. Ellen watched as Alzheimer’s stole this man away — husband, father, grandfather. In the years that followed, Ellen’s paternal grandmother also got Alzheimer’s. Another theft. Two childless great aunts and her other maternal grandmother, all for whom her family provided care, developed dementia from strokes. More thievery.
Daniel’s journey began a generation closer. His father, Lester Potts, was a rural Alabama lumberman and sawmiller, a man saturated with the Great Depression work ethic. About 1999, Danny’s mother began to notice things — paying bills twice or not at all, forgetting simple things, an angry outburst entirely out of character. She would tell these things to Danny, but denial is possible, even for a neurologist well-versed in the disease process. When Lester was fired from his retirement job parking cars at the local hospital where Danny worked, denial was stripped away. The hospital attorney told Danny that his dad was losing cars, losing keys, staying gone for an hour to park a car, etc. When the diagnosis of Alzheimer’s disease came, it was not a surprise. At this point, Danny felt like a failure as a son and as a doctor. His dad’s social facade was substantive enough that he fooled his son, but then, his son wanted to be fooled.
That really began our journey together with Alzheimer’s disease. Between the two of us, there are very few situations that our families have not encountered as dementia caregivers, when one considers the eight relatives with Alzheimer’s disease and stroke dementia for whom our families have provided care.
The miracle occurred, as miracles tend to do, in the most unexpected of places and in the most unexpected of ways. When Lester began attending a dementia daycare center, Caring Days, he became a watercolor artist, all at a point in time when he could no longer hammer a nail or change a light bulb. As we mentioned earlier, Lester was about hard work, but his variant of Alzheimer’s disease affected his frontal lobe (the area that houses your sense of self) more so than the rest of his brain. Amazingly, the part of the brain that housed creativity was not affected significantly until very late in the disease process. About 100 paintings followed over the next 3 – 4 years, much to the amazement of our family. Even into the late stages when his father could no longer tell us what he had painted, he put images from his childhood on the canvas — his own father’s hat and high top boots, a cross-cut saw, trees, bird houses, a cross. Music from the past was the same. When Lester was in a hospice facility at the end of his life, he had not spoken in 4 or 5 months, but he could sing the familiar hymns of his childhood. The art and music remained.
Since Lester’s death in September 2007, the unexpected journey with Alzheimer’s disease has continued. We both felt strongly the need to advocate for those with dementia and their caregivers, but how? Enter the American Academy of Neurology’s Palatucci Advocacy Program, which educates neurologists and others to advocate for those with neurological illnesses. Danny became an advocate, then a mentor, then a faculty member and finally, the director. In 2008, he was the AAN’s Palatucci Advocate of the Year. We began a caregiver training company, Dementia Dynamics, out of which was born our caregiver handbook, A Pocket Guide for the Alzheimer’s Caregiver, which contains the information we wish we and our families had possessed when we were caring for loved ones. He has presented our story around the country and this month, he will present at the International Conference on Alzheimer’s Disease in Paris.
But the art call us back. Lester’s art has been displayed around the country and in November 2010 was exhibited at the David W. Streets Gallery in Beverly Hills — a long way from Pickens County, Alabama. In January 2011, our foundation, Cognitive Dynamics, began a course in the University of Alabama Honors College called “Art to Life.” In this course art therapy is provided for individuals with Alzheimer’s disease who might not otherwise have access to it. The Honors College students document the person’s life story through watching and recording the art therapy sessions, talking with the person and their family, and going through family memorabilia. The course will be offered again this fall and talks are underway with other universities to expand it to other parts of the country.
The caregivers and loved ones with various forms dementia lost much and sacrificed much, but there have been myriad blessings along the path. Our calling is to honor that sacrifice by helping others who travel similar roads.
Ellen Woodward Potts and Daniel C. Potts, MD
To listen to the interview of Daniel and Ellen Potts on Alzheimer’s Speaks Radio CLICK HERE
Authors’ Daniel C. Potts, M.D. and Ellen Woodard Potts will discuss their personal journey with EIGHT family members who had Alzheimer’s disease and other forms of dementia. Their book is loaded with practical steps and tools for Caregivers who have found themselves on this path of memory loss. Here are two fascinating YouTube videos-
An Artist’s Escape from Alzheimer’s Disease” which is a film documentary done by the University of Alabama at Birmingham (http://www.youtube.com/watch?v=I_Te-s6M4qc) and “The Broken Jar” video which shows the Danny’s dad’s art featured in a book by the same name http://www.youtube.com/watch?v=I6ksfsp94YQ. This video contains about 1/3 of his dad’s total paintings and they are arranged in chronological order to follow the disease process. They start out simply, get really good in the middle and as the disease progresses, they become less colorful and more simple. The final two paintings, the “blue collage” and the “crosscut saw,” were painted entirely from memory in late stage Alzheimer’s disease.
Cognitive Dynamics Foundation – Art initiatives
Adult daycare center where Danny’s dad learned to paint Caring Days,