10 years of care-taking- How to stay "you" in the middle of it.
The other day as we walked around the new memory care unit my Mom has moved to, my sister made a comment about how it’s been 10 years of taking care of our parents. Ten years seemed way too long. But she’s right. Dad got sick for the first time with Guillain-Barre Syndrome in the winter of 2009. Prior to this, my parents had been healthy, traveling, considering retirement and looking forward to being together. I got the phone call that Dad “looked like shit” (my brother’s professional opinion) Dad went from the gym to the Intensive Care Unit (ICU) in one day. He would stay in the ICU for 5 weeks. I would stay with my heart in the ICU and my physical body driving back and forth from Connecticut to Philadelphia, trying to keep my job, be with my family and keep nursing my son. I don’t know when I will forget nursing my son on the side of the highway in a snowstorm, heading home after another visit to see Dad.
And that’s where it started. That’s when I started asking “Everything ok?” as my first question when a family member called. If someone called twice and I couldn’t answer, I would immediately text and anxiously wait for a response to make sure I didn’t need to leave the meeting I was in and drive somewhere. I started needing breaks from my phone, feeling at points like it was attacking me with logistics, sadness and worry. When I see a mystery number on my phone I always try to figure out if it could possibly be my kids’ schools, or Mom’s caretaker, or maybe the facility where Mom is. My family took a trip on a cruise and half of the reason I liked it so much is because there was no cell phone reception. The first day was full of anxiety about this, worrying about something happening that I wouldn’t know about. But the second day was a happy release- to have a break from the constant drain of having a sick family member. (I wrote about that cruise here)
It’s been 10 years. That’s all of my 30’s. Dad got Guillain-Barre, had a trach and a g-tube. He got Multiple Myeloma. Not just that terrible cancer, but the refractory, awful version of it that managed to fight off every possible treatment. Dad died and Mom was diagnosed a few months later. I don’t know what my 40’s will bring. I imagine we will lose Mom as well. In so, so many ways, we already have. I feel in all ways like I have no parents. Yet I do, and she requires help and care. I have been changed by the last 10 years- it would be impossible not to.
This is why I started this blog and why I still feel called to write here. Because on paper that’s a lot of things. And I need to put on paper all of the other things of this last decade. I need to constantly be grateful for those things as well. Dad recovered and defied all odds to dance at my wedding, meet my son and bless our marriage. I have two healthy children that call me “Mama” so many times in one day. My husband gets smarter and cuter every day. I am able to run, embarrass myself at something called “PE 101” at the gym and beat my 6 year old in arm wrestling. I have a job that I like that challenges me. The other day Mom looked at me and gave me a big hug and said “I know you!”. These things don’t erase the other things. But they are there, waiting for me to notice them.