Caregiver Corner: Finding Hope after TBI
By Angela Smith, Senior Research Coordinator, Center for Neuropsychology and Neuroscience Research, Kessler Foundation
On July 3, 2011, Joan Enker’s life as a busy wife, mother, grandmother and caregiver to her aging parents changed in an instant. During a family trip to upstate New York, a young driver struck her husband Warren while he was on an errand to purchase additional folding chairs for his family to watch the holiday fireworks display. The trauma was compounded by the fact she had no idea what happened until he failed to return. After several desperate hours of searching, Joan learned Warren had been medevacked to a local facility, but because of the severity of his injuries and the increasing fog, he had been taken by ambulance to Westchester Medical Center.
After three weeks, Warren, a well-known colorectal cancer surgeon at Memorial Sloan Kettering, in Manhattan, was transferred to Kessler Institute for Rehabilitation in West Orange, where he spent seven and a half weeks before transitioning back home to Teaneck, New Jersey.
Joan remembers how difficult it was to leave home during those early years. “I was very uncomfortable leaving him alone,” Joan said. “You are left with residual trauma that keeps you from stepping out.” Joan gradually recognized the importance of making time for herself, and she now takes watercolor classes, yoga and socializes with friends.
Their youngest daughter, Aliza, moved back home two years ago and was able to be there this past March when Warren became sick with COVID-19.
At the emergency room, a familiar story played out as they told Joan she could not stay with Warren. However, as his strongest advocate, she has learned to never take no for an answer.
“He has a very complicated medical history as well as anxiety, and there was no way I was going to leave him,” she said.
After Warren’s discharge from the ER, Joan and Aliza became symptomatic as well. Joan credits Aliza’s cooking, along with “time and Cheez-Its®,” in helping her care for Warren despite her own struggle with the coronavirus. Lessons learned from prior health emergencies, particularly the importance of having a well-established medical team, also aided their recovery. When the pandemic began, Joan was concerned with Warren’s susceptibility, but knowing they had a good support network in place helped her remain calm.
Practicing mindfulness-based stress reduction has taught Joan to cope with caregiving pressures. “I am reactive by nature, but having the tools to find calmness when I am ready to explode is so important,” she said.
In addition, she is a firm believer in the value of education: “Do your homework; know what resources are out there and use them,” she said.
She and Warren read “Over My Head” by Claudia Osborne M.D, the memoir of an accomplished physician who sustained a brain injury. “The more tailored the experience is to our situation, the more helpful it has been,” she shared.
Joan recommends understanding the brain and the changes that happen after injury. Learning about neuroplasticity in “The Brain’s Way of Healing” by Norman Doidge, M.D. was a turning point for her and Warren. “It’s very difficult to pull hope up from your feet if you don’t have something to help you find the way,” she said.