Friday, March 30, 2012

“No Choice”

“How do you commit suicide?” my mother asked yesterday. I had perched her upon the toilet and knelt down to pull the Depends she’d worn all night off.
         I looked up at her, “What?”
         “Commit suicide?” she repeated only the last two words of her question as speech becomes more of a challenge for her.
         I eased the Depends down, tossed them into the trash, and pulled a clean pair from the drawer, buying a few moments to think before I answered. “I suppose people pick different ways. Some people take pills, others use carbon monoxide, some use guns, or poison.” I shifted back on my heels to look at her.
         “Can’t the doctors give me something? Can I call and ask?”
         “No, Mom. Not in most states. Definitely not in Texas.” I stood and helped her stand. With her hands gripping her wheelchair arms, I snugged the Depends up over her rump, trying not to notice her weight loss. “Turn.” I nudged her into motion and spotted her as she swung around and sat into her chair.
         “I think I should get to ask the doctor for pills,” she stated very matter-of-factly. “I should decide one night to go to sleep and not wake up.”
         I wheeled her chair over to her bed, perching on the corner so I could talk with her eye-to-eye. “I know you’d like to have the choice, but that’s not our reality.” I picked up her footsies and slipped them over her rigid and contorted toes. “Do you want to get dressed today? Or do you want a clean nightgown instead?”
         “Nightgown.” Mom continued her thoughts as I tugged a clean gown over her head. “There’s nothing else wrong with me, you know. The doctor’s keep saying I’m okay.”
         “That’s right. You’re heart’s perfect. You have great lungs. You’re kidneys are at 43%. You’re healthy except for the Huntington’s. It’s your muscles that just don’t want to work anymore.”

         And so our day began.

         After lunch, Mom asked to return to her room to stretch out with Willie Nelson. Music honky-tonked as I settled Mom into her bed. She now must have her pillow positioned “just so” while the corner of her bedspread has to tuck under her chin.
         “Do you need anything else?” I asked before leaving the room.
         “I’m just trying to figure it out.”
         I sat on Mom’s wheelchair to hear her over Willie’s croon. “Figure what out.”
         “Suicide,” Mom began again. “How am I going to commit suicide?”
         I shook my head. “You aren’t. You’re going to keep living each day the best you can.”
         Mom pointed her finger at me, “I should get to decide!”
         The day continued along this same path, for once my mother’s HD grabs ahold of a topic, it won’t let it go.  

I do not tell my mother that her disease will continue to progress. That today is her best day. Although frustrated by her constraints, my mother’s grown used to needing help for her daily activities. Recently, she grew tired during a meal and complained that she just couldn’t feed herself more although she was still hungry. I sat down and spooned the last few mouthfuls for her. When she finished, she stated, “This is embarrassing.”   

Mom on St. Patrick's Day
         I grieve for my mother every day and on so many different levels. For the majority of the time, she’s extremely aware of her limitations. Frustration with her immobility means she cries daily, and no amount of antidepressants will prevent this ritual. My mother’s confusion, when it happens, circles around vivid dreams that she confuses for reality. Sometimes, the obsessive-compulsive nature of Huntington’s Disease pulls her into a stubborn mindset. This rarely occurs during the day, but some evenings and nights my mother’s irritability morphs into an alien personality with cutting tongue and knife sharp words that stab and wound. Luckily, this demon surfaces rarely and vanishes almost instantly.
         I know my mother wishes to keep dignity in her life. I know she fears the times when she’s confused. I know she hates the moments when she lashes out with poison. Having so little control over the current episodes in her life, I understand why she would spend a day discussing her desire to pick an end time. One can debate the morality of end of life choices, but for a woman in her eighties having a progressively aggressive disease, my mother longs for options that don’t exist.  By the end of the day, she realized that for now she'd pick living over dying, but she wishes that she could have more choices.

Copyright 2012 Elizabeth Abrams Chapman

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