My uncle was recently diagnosed with ALS, or Lou Gehrig's disease, after months of doctors not knowing what was wrong with him, claiming that sleep apnea had caused brain damage.
Gary was one of the biggest men I'd ever seen up close, probably 6'8 and pretty heavy, but he's lost over 100 pounds, just wasting away.
Today I went with my Aunt, her daughter, Gary's mom, and my mom down to the hospital where he's being treated in Detroit. He was in the ICU and we learned how his ventilator works, how to inject his medications, how to change ventilators so he can talk, how to suction his air passage, and how to bag him if there's trouble with the vent.
His daughter met us there and I could tell by looking at her that she wasn't paying attention. She wasn't interested in a thing that was said and I knew she wasn't willing to help. She wouldn't even hug him.
My Aunt's crazy to bring him home now. I've never seen him so weak and she won't read about how the machines work. She implied that she wanted us there to take notes and help her learn how everything worked, but once we were there, we could tell the plan had changed. We know she expects both my mom and me to suck the gunk out of his trach tube every three hours, give him sponge baths, and wipe his butt.
As selfish as it sounds, I don't think there's any way I could do that.
Gary is one of the few people in my family that I can stand, but he and my Aunt have only been married a few years and honestly, I don't know him that well.
Even if it was one of my parents, I doubt I could do it. I'd have to hire a nurse.
I have a thing about necks...I can't even touch my own let alone shove a tube through a hole someone else's to suction out out mucus so they can breathe.
They showed us the machine and then he became the machine. They talked about him like he wasn't even there. What it would take to keep him running.
I gave him a hug, told him a stories, and made him smile, and it made me feel worse for him knowing that he's in there...his brain still works and he can still comprehend everything around him, but he can't move. He can't even move enough to breathe.
Kierkegaard said,"Only the noble of heart are called to difficulty," so perhaps the noble thing to do is get over my phobias and just do it.
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