This week was a good time for Mom and me to connect again, and to really check in with how we are doing. We spent time with Dad, but since he was pretty stable, I took this opportunity to really check in with Mom. She has been so open and honest about how she is feeling, but we still worry about her. Dad's illness is simply a huge concern, and could well be the biggest test of her life and faith - at least so far. And yet she is still standing. I was amazed to simply watch her expressions and her mannerisms as she interacted with Dad. Everything from the way she clipped his nails and massaged his hands to the way she spoke softly to him and the way she gently kissed him oozed compassion. I am continually amazed by her strength and her commitment.
We spoke of how Dad seems to be "in costume" much of the time. He will say things we aren't used to hearing him say, and responds in ways we don't expect. This analogy helps. But let us not ignore the sweet times he quickly looks over at you and smiles at something funny that you say. I swear one time this week he laughed at me! I wish I could remember what it was I said!
I've been thinking more and more about the drugs Dad is on, and it is really no wonder that he seems to be "in costume." These drugs are mind-altering, heavy medications that are designed to help, but have some ugly side effects. He knows that he is acting differently, but I know it is hard to control. So there you are left feeling unable and frustrated.
I connected with Dad on knowing how it feels. My experience was not nearly as severe, but I felt unable and frustrated also. I had a couple very dark days. I told Dad that I was giving him permission to have this feeling, and to release those things we don't like. I said, "We'll either correct you, or ignore it." And he looked RIGHT at me and smiled. I know he doesn't want to be that way, but honestly, he doesn't always have the control.
So, we pretend that he is "in costume" or "covered up." That Dad we have all known and deeply love is still there, he is just covered up by the ugliness of GBS that IS NOT TRULY HIM. We will get him back. We WILL beat GBS.
In the meantime, Mom needs a new mechanic. I was unable to fix her car (felt all empowered that I had fixed it for a couple days anyway!). The good news is that her new carpet is in and walls are beautifully painted, and things are looking so homey. When she is at the condo, she is revived. She thinks about Dad and her being there together, and everything she does to "fix it up" has Dad at the forefront of each thought.
Mom, you are the ultimate example of faith. I know you are worn down, but never forget the army of friends and family who are supporting you in every possible way. Tell us what you need. We'll do it. 'Nuf said.
Love you--
Becky :)
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