“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 2012 |
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.
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