November is National Family Caregivers Month—a time to reflect on and honor the sacrifices caregivers around the world make for their family members. We spoke with participants in the UK College of Health Sciences Aphasia Lab, and the people who do life with them each day, who shared their stories of hardship and joy.
Aphasia is an acquired language disorder usually resulting from a stroke or trauma in the brain’s dominant hemisphere. The condition causes a disconnect in the areas of the brain responsible for language and can impact a person’s ability to speak, read, write, and listen (ranging from very mild to severe). There is no cure for aphasia and while those diagnosed with the condition improve, most live with lifelong communication deficits.
The Aphasia Lab—which is part of the larger communication sciences and disorders program at CHS—is a selective program that offers individual and group support to persons with aphasia and their families.
Nancy and Glen Cummins
Glen Cummins experienced a stroke in February 2017 and now lives with a severe form of aphasia that limits his ability to communicate verbally. His wife, Nancy, has faithfully supported him throughout his ongoing years of rehabilitation.
“We are thankful Glen did not have any physical side effects from his stroke,” Nancy said. “However, he can no longer verbally communicate with me due to the aphasia. This has been the hardest adjustment.”
This loss of communication can take an emotional toll, but Nancy is quick to praise Glen for the way he cares for her and allows her to care for him. “Half the time he may not understand exactly what I’m saying, but he lets me talk. We’ve started to create a new normal,” she said.
“When we come to the aphasia lab, Glen really shines,” Nancy continued. “He’s able to be with others who will truly listen to him. It can be difficult to talk with him because of the aphasia, but the student clinicians here will let him lead the conversation for hours. I am incredibly grateful for how these students serve Glen.”
Because of the Aphasia Lab, both Nancy and Glen have found a support system and a renewed sense of belonging. “The people in this program equip me so I can be the best caregiver possible,” Nancy said. “The lab sessions give Glen an outlet that he doesn’t have with most people, and it helps me because I know there are people who understand what I’m going through. No matter what, I’ve gotten so much more of Glen than I’ve lost; he’s still my husband.”
Steve and Audrey Sitzlar
Eighty-eight-year-old Audrey Sitzlar has faithfully attended the Aphasia Lab since its inception more than a decade ago. After her stroke in 2003, she now lives with a form of aphasia that predominantly affects her speech, reading, and writing.
Steve Sitzlar, Audrey’s husband and caregiver, doesn’t mince words when asked about life after his wife’s stroke. “It’s been 16 years since her stroke, and the days can be both mentally exhausting and physically exhausting,” he said. “Everyday tasks are no longer easy and it requires much support on my end.”
Although their life is now full of different challenges, Steve has remained positive throughout the journey. “We take it one day at a time,” he said. “Literally it can be one minute or one hour at a time. We have to approach the days in small increments and we find the joy in each individual moment.”
Thanks to her participation in the Aphasia Lab, Audrey has seen marked improvements in her road to recovery. “Audrey has gained back many of the words she lost to her stroke,” Steve said. She can carry on small conversations now. Audrey is not defined by her disability. We are honest and transparent that for us, it just may take a little more time.”