By Ian Hebeisen
My mom recently described what she called “a ripple effect” resulting from her traumatic brain injury. Upon sustaining the TBI, it began affecting her life in ripples, starting at home and spreading outward. It affected life with her family and friends, then work, and so on. “It spread throughout every aspect of my life,” said Mom.
At home, daily tasks she could do before the accident suddenly became extremely difficult. My brothers and I would accommodate for her, and adapt the things we did that triggered her – things like monitoring our music or warning her of loud noises in movies. Whenever she needed assistance, she would tell us and we would come and help.
With her friends, she would try to explain her condition, but the message wouldn’t always get through to them. Some of her friends even pulled the “I’m struggling too” card. This didn’t show solidarity, but actually ended up belittling Mom since it discredited her experience.
As her tasks at home grew difficult, so too did her work responsibilities. She quit her original job since it proved too taxing, and managed to land a job with a boss willing to adapt the position to meet her specific needs. But in time, this job became draining too. “I needed to choose between investing my energy into work or my home life,” said Mom.
What helped in every one of these situations? Communication. A clear line of communication will ease complications in any relationship. At home, Mom clearly communicated her needs, allowing my brothers and me to swoop in and offer assistance. She expressed her struggles to her friends, and did her best to help them understand her situation. And when Mom needed to adjust her work to improve her quality of life, her boss listened and willingly accommodated her needs.
Listening is an important yet often overlooked aspect of caregiving. Something as simple as offering an open ear can make a world of difference. Pay attention to what ails your loved one, and if they want help finding solutions, take the time to sit and brainstorm with them. Otherwise, just letting someone vent about their situation or celebrate a small victory goes a long way. Whenever Mom and I drive around, I’ll ask her how she’s doing, and after she’s finished talking, she always ends the conversation with “thanks for listening to me”.
Communication goes both ways. If you’re a caregiver for a loved one and notice something may be a trigger, let them know. Your perspective matters too – don’t be afraid to offer your insights in a respectful manner. Keep your own needs in check as well. Know your boundaries, and communicate them to your loved one as soon as possible. It’s much easier to create boundaries early then to try and adjust them later.
For those of you living with TBIs, find people in your life willing to listen and problem solve with you. Be open and honest about your experiences; this will allow people to empathize with your challenges. Certain Facebook groups dedicated to life with TBIs offer platforms for survivors to recommend tips and tricks.
Not everyone will get what you’re going through, and some will try to undermine your reality. In these cases, be up front about your feelings. They don’t get to decide what’s challenging for you. Nobody knows your body and mind better than you do. If they still don’t understand, turn to the caregivers you trust. They’ll help you navigate the murky waters of a TBI.
Ian Hebeisen is a writer based in the Twin Cities. Graduating in 2020 with a degree in Literature with a Writing Emphasis, Ian spends his time writing for The Brain Health Magazine and JUVEN Press. He also writes comics, zines, short stories, and poetry. He lives with his partner and two cats, and enjoys playing board games and reading.