Caregiver Hero –  Mark Matasic

I’m honored to receive this award and to be recognized by such a prestigious organization. This award is dedicated to my father. My father is the real hero. His strength and courage throughout his battle with locked-in syndrome gave me the strength, courage and inspiration to become an outspoken advocate for better systems of care for stroke patients.

For a year, Mark Matasic provided around-the-clock care for his dad — his best friend — whose severe brain stem stroke left him completely paralyzed and only able to move his eyes.

It was, Mark said, his “labor of love” until his dad died in 2016.

“I cared for him in hospitals, rehabilitation facilities and at home,” Mark said.

Mark’s experience was also the impetus to become an advocate for improving stroke systems of care in Ohio and to honor his dad, who didn’t get lifesaving treatment at the hospital until almost 19 hours after his stroke.

Since connecting with the American Heart Association/American Stroke Association, Mark has testified before state legislators on the need for stroke transport protocols and a stroke registry. He also writes newspaper editorials and articles for AHA newsletters about his father’s stroke care and his family’s difficulties.

While caring for his dad, Mark said he “emotionally broke down” at times. But family and others supported him and helped him get through it.

“If it’s possible, I recommend finding someone that can step in for you from time to time and provide care while you take a break,” he said. “You need some time away to avoid burnout.”

Mark also suggests caregivers join a support group and learn everything they can from nurses and therapists.

“Ask questions and be a strong advocate for your loved one,” he said. “Make sure they are getting the best care possible at all times. Do your research and find out what your options are. Do not be afraid to speak up!”