Mark Matasic – What I learned as a caregiver
Mark Matasic is a resident of Campbell, Ohio. He has become an advocate for improving stroke systems of care since his father’s passing in 2016.
My experience as a caregiver was unique in that my father suffered from a rare condition called locked in syndrome. As a result of a brain stem stroke, my father was completely paralyzed. He could not swallow, talk or move at all. The only thing he could do was move his eyes up and down to answer questions. Because of my father’s condition, he required around the clock care and depended on me for everything. I cared for my father for an entire year until he passed away. I cared for him in hospitals, rehabilitation facilities and at home. Some things I would recommend any caregiver do is that they learn everything they can from the nurses and therapists. Ask questions and be a strong advocate for your loved one. Make sure they are getting the best care possible at all times. Do not be afraid to speak up!
Some things that I did was to make sure my father got into the best rehabilitation facilities possible. Do your research and find out what your options are. Don’t rely on hospital staff or social workers alone for this information. Most often, loved ones are sent to rehabilitation facilities close to home, however if you can find someplace that can provide superior care, even if it’s far from home, arrange for your loved one to go there if you have the means to do it. I live in Ohio but was able to get my father into a world-renowned rehabilitation center in Chicago.
When recovering from stroke, it’s very important that the person recovering gets physical, occupational and speech therapy as soon as possible and that they get therapy daily. I recommend five to six days a week of therapy. Go to every therapy session you can and learn hands-on from the therapists and actively participate in the therapy so you can provide the same therapy when you get home.
Caretaking can be emotionally and physically exhausting especially if you are caring for someone who is completely paralyzed and dependent on you around the clock. 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. You need some time away to avoid burnout. I did not have that luxury as my father’s care was so complex due to his condition that I did not feel anyone else could provide the level of care that I provided. I look back and honestly don’t know how I did it. I think I was running on pure adrenaline most of the time. I refused to let my father down or let the standard of care drop off at all. Plus, I saw my father fighting to get better and I felt if he could fight in his condition then there’s no excuse for me not to fight.
There were times I emotionally broke down and thankfully I had my family to talk to and help me get through it. I recommend in addition to taking some time for yourself on occasion to also make sure you have a support system in place to help you through the emotionally difficult times. Also, if you are able to find a stroke support group I would recommend joining. It’s helpful to meet and talk to people going through similar situations that you are.
Learn more about caregiving after a stroke.
