Several considerations go into treating a patient—the patient's personality, the disorder or impairment, and the approach that best fits this unique combination. But there's often another element that is equally important but not usually considered: the patient's caregivers.
That was the message Diane Kendall, assistant professor at the University of Washington's Department of Speech and Hearing Sciences, was trying to convey to the 85 students in her "Speech and Language Disorders" class. In December she brought four caregivers in to speak to the students about their caregiving experiences.
"I try to incorporate this perspective, because counseling is a huge part of what speech-
language pathologists do," Kendall said. "I think it's crucial to understand the issues that go on with caregivers—the depression and the coping."
The caregivers shared their stories with the students. Three were spouses of stroke victims; the fourth was the mother of an adult with traumatic brain injury. The caregivers ranged in age and family circumstances, but their stories had one common thread—because their loved ones all had experienced sudden-onset conditions, as spouses and parents, they took on a new and challenging role overnight.
One of the presenters was a young mother caring for her 32-year-old husband after he experienced a stroke; at the same time, she was taking care of their 1-year-old child. Another was a 60-year-old woman married to a man who had a stroke two years after their wedding. Other stories included a mother who cared for her son, 20, who had an accident while using cocaine. The speakers described the stark changes in their roles, finances, and personal and professional identities. They wept and expressed their anger and frustration.
The effect of the caregivers' stories on the class was profound, Kendall said. Many students had tears in their eyes.
And if Kendall was unprepared for the students' reactions, she was even more unprepared for what happened next. After the class, the students organized a volunteer sign-up to provide free meal preparation and respite care. They also collected $220 for gift certificates to demonstrate their appreciation to the caregivers for sharing such personal stories.
"My intention only had been to highlight the role of the caregiver. I had no idea the students would get directly involved," Kendall said.
Jo Ristow, a post-baccalaureate student in Kendall's class, helped organize the volunteer support.
"It was eye-opening to realize that not only is the patient's life different than before, but the lives of a constellation of people around them have completely changed," Ristow said. "It struck me that there was this common theme—that they felt invisible and were grieving over the loss of the person they were taking care of."
The volunteer effort has expanded into a listserv; the caregivers post when they need help and the students can sign up to provide it. Kendall sees this event as the spark that could ignite a larger initiative: She is organizing a statewide registry for aphasia patients and would like to create a similar volunteer network as an inherent part of the project.
"After seeing what these students have accomplished," she said, "I think this could be a good fit with providing caregivers with some much-needed support."