Tuesday, December 07, 2004

Mom's progress.

About five months ago, I said that Mom was considering how to keep living once she could no longer eat or breath naturally. Mom has ALS, a rare neurological disorder which has paralyzed most of her body without affecting her mind.

Her feeding tube is working fine. It's a plastic bag on a pole with a machine to regulate flow. Her husband periodically pours a can of fluid food into the bag. He disconnects the machine to take Mom to the bathroom or when he needs to use the same tube to give her medicine. Mom never swallows.

She sleeps with a machine on her face to push air in and out of her lungs. During the day, she has to pay attention to breathe. One day in the bathroom, she forgot to take a breath and passed out. When my stepfather noticed her, he pushed a few breaths into her himself, and she awoke.

Mom now has a machine to talk for her too. There's a big purple button we can velcro behind her, and she operates it with her head. A screen in front of her offers a selection of words or letters, and she spells out (slowly) what she wants to say. The machine gives the words a voice, but we typically read the text over her shoulder because the voice is hard to understand.

A lot of Mom's machinery is paid for by the MDA, and it will go back to the MDA (and to other patients) after she's passed away.

I've been more and more afraid of Mom's death. As much time as I have had to prepare for it, I do not feel prepared. I've spent a lot of time avoiding any kind of confrontation of what's to come, and I fear what will happen when that reality looms too large to be denied.

Mom asked her doctor how long she had, and he predicted six months to two years. I would not have guessed that she'd survive six months, but I'm not a doctor. In months past, I feared a day when Mom could not communicate, a day I thought very near. I see now that was premature, that communication will go on much longer. Maybe I'm wrong also about how long she'll last.

I think Mom's passing will eventually be something I grow from. I think I may recover from it as more of a family man and less as a son. Thinking that is comforting, and I think it also avoids fear. I can think about being stronger later because it keeps me from thinking about the funeral, the grief. I take it personally. It scares me like a nemesis, as if Death is vindictive and waiting to visit some wrath upon me by taking my mom.
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