On Friday educators from my school had a professional development day. The afternoon session was an opportunity for the teachers to choose something that interested them most. I found myself in a session about Compassion Fatigue—how caregivers and teachers (or otherwise) give everything they have mentally, physically, spiritually and sometimes financially to a person or job and in return have compassion fatigue. We talked about how someone who takes care of a terminally ill person or student with severe trauma all day or for several years may take this trauma with them throughout other parts of their life or feel bitter towards people who have never seen or experienced such. People who are caregivers may feel guilt or doubt because they carry the burden of never doing enough. Throughout the session I continued to think how this not only fits in my professional life but also my personal life.
I sometimes feel like I am more of an ALS caregiver and advocate than anything else. I leave the house and wonder if Kris will do ok without me. I send multiple texts throughout the day checking in (before he is even awake). When everyone is talking about happy hour and dinner at the trendy new restaurants after work all I can think about doing is getting home to be sure that Kris isn’t left alone for too long. I am his wife, caregiver and nurse from the minute I walk into the door. Even while I sleep. I often have to wake up to move a leg or arm. When someone asks us to go somewhere outside of the house a million questions begin. How far away will we need to drive? Is there handicap parking? Are there stairs? How loud is it going to be? Will there be food Kris can swallow? What happens if our van breaks down? Are the bathrooms big enough for a wheelchair? How cold will it be that day? Who will be there? Will he get anxiety? I have to be thinking what is best for Kris at all times and sometimes that means passing on what seems most fun to the people around us who don’t deal with ALS 24/7.
The Grace I have found in having a husband with ALS is that he doesn’t mind if I take an hour to myself. Kris suggests I get out to get a manicure or have lunch with a friend. I love that Kris and I always have dinner facing each other. Everyday when I get home from work Kris greets me with a kiss. A night in to watch Netflix and chill is always ok with him. We communicate better than couples that have been married 30 years. I’ve learned to be more patient. We treat each day as if it could be our last. Overall, I’ve learned that everyone has issues they’re going though. And most importantly, I’ve learned that I can’t do this all on my own I must trust in God and his plan for my life, regardless what that looks like.