“It’s just a constant, everyday battle” is how Julie described her experiences in being caregiver to her daughter, then age 9, who suffered a frontal lobe brain injury during an auto accident in 1988. In 1991, her daughter was diagnosed with Post-Concussive Syndrome. Today, Julie’s daughter is outwardly fine, yet some of her higher functions, such as decision-making, have been affected by the injury. “What people don’t understand,” Julie explained, “is she may look older in person and on her driver’s license, but part of her brain will always be nine years old.”
The lack of understanding from others has inevitably led Julie into conflicts on behalf of her daughter – a situation not uncommon for caregivers. Julie fought for her daughter’s medical treatments and therapies with insurance companies. Sadly, those fights ended in settlements for significantly smaller amounts than what was needed to cover the actual costs of treatments and therapies, forcing Julie and her family to pay for them out of pocket. At her daughter’s school, Julie faced resistance from teachers and school administrators over learning and behavioral issues. Julie has even struggled to get family members to understand her daughter’s situation and help her daughter feel like she belongs.
The sense of belonging is one thing Julie sees as critical for brain injury survivors, which she feels is one of the Brain Injury Association of Michigan’s (BIAMI) greatest assets. “I think a lot of it is the way that we’re able to help people, with this particular disability, feel that they are not alone, that there are others and that there are people who understand and are willing to help guide them.” In addition to building a community for brain injury survivors, Julie added that the information on brain injury and the network of resources provided by the BIAMI has enabled her and her family to get answers to questions and find the professionals they needed.
Currently, Julie leads the Tri-Cities Chapter in Saginaw, and has been working to grow and rebuild it with help from other volunteers. She hopes that the public will understand that every brain injury and every recovery is as different as the individuals who suffer them. When asked about what advice she had for other caregivers, Julie stated it was important to understand brain injury and how it affects the survivor you are caring for, but also when to step back and to recognize the need to reach out for help for both the survivor and yourself. “Keep your faith and keep your humor. Find ways to laugh because there are some pretty funny things. Be able to find the joy with all the pain.” Clearly, Julie has heeded her own counsel, and in the process manifested caregiving at its best.
