In 2007, Christine and Gery Sutton were excited about moving from Oklahoma to their hometown of Boone, IA. Gery, D.O., a physician/geriatrician and a 1976 graduate of DMU’s osteopathic medical program, planned to work at the clinic where his father had practiced. After just a month, however, he was placed on leave due to memory problems and his inability to master the computer system. A series of medical exams and tests revealed a nightmare diagnosis: early onset Alzheimer’s disease.
He was 56 years old. The couple had been married just five years when he was diagnosed. For the next three years, Christine was his caregiver, navigating the physical, emotional and social hardships the disease entails.
On Thursday, March 1, Christine and Selden Spencer, M.D., a neurologist with McFarland Clinic in Ames, IA, will present “Grand Rounds” at DMU in the Student Education Center Auditorium from 7 to 8 a.m. Titled “Alzheimer’s and Dementia: A Caregiver and Clinician Perspective,” the event is free and open to all who want to learn more about these diseases, local resources and care and treatment options. No registration is required to attend the event in person. An online option and continuing medical education credit also are available.
After Gery died on Christmas Eve 2011, Christine went on to write a book about their experiences, Stop and Smell the Garbage: A Caregiver’s Story of Survival. “I wanted to write the advice book that I wish someone had given me,” she stated in the preface. “A book that honestly addresses caregivers’ feelings. A book that places caregivers and those they care for on an equal footing. A book that doesn’t blink in the face of reality.”
While Christine put Gery in a nursing home for what would be the final year of his life, her three years of taking care of him at home were nothing less than heroic. No longer able to work, Gery became highly dependent, following Christine constantly, asking her the same questions repeatedly and, though not one to pity himself, feeling useless. He suffered anxiety, sleep deprivation and eventually the inability to perform the simplest of tasks. Sleep-deprived and stressed herself, Christine feared leaving him alone and mourned the loss of her loving, smart spouse.
“Every spring for three years, I watched Gery deteriorate so rapidly that it was shocking,” she stated in the book. “Gery was still in there, and he emerged occasionally, but most of the time he was hopelessly lost in the fog of this evil disease.”
The book’s title relates to a walk the couple once took with their dog, Lucy. When Lucy pulled Chris over to an outdoor garbage can, Chris asked, “Oh, do you want to stop and smell the garbage?” Gery, thinking she was talking to him, lifted the can’s lid, lowered his head and breathed in. Chris was initially shocked, then burst out laughing at “this hilarious reminder” of ways Alzheimer’s patients literally interpret what they hear.
“In the coming months, this incident began to assume a new and deeper meaning,” she wrote. “Where there is no why, there can still be meaning. Even in a pile of stinky garbage.”
Christine’s candid account offers many insights and advice to caregivers: Learn to cherish each day as a divine gift. See an attorney – including for the patient’s end-of-life planning – and a financial advisor. Let the ill person decide whether he/she wants to discuss the disease. Treasure your ability to laugh and see the humor in Alzheimer’s. Try to help your patient feel valued, but don’t blame yourself for caregiving mistakes. Rely on legitimate sources of information about the disease and its treatment, not “junk science.”
Christine also emphasized in the book the fact that Alzheimer’s is a disease, not a mental illness. “It is ludicrous to be ashamed of a pathological process simply because it occurs in the brain rather than in the heart or lungs,” she wrote. “From the day Gery was diagnosed, we refused to behave as though this was something to be ashamed of and concealed.”
Additional opportunities to learn about dementias: “Embrace Aging,” brought to Des Moines University by Calvin Community Foundation, is a series of educational conversations on Alzheimer’s disease and other dementias presented by expert speakers. Topics include palliative care, financial realities, the emotional challenge and the importance of storytelling for dementia patients. For more information, call 515-277-6141 or visit calvincommunity.org.