"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
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.

        

Copyright 2012 Elizabeth Abrams Chapman

“Difficult Decisions”

         In recent weeks, connections on Facebook led me to discover WeHaveAFace Organization—The Huntington’s Disease Project. This page connects the community of Huntington’s disease soldiers with pertinent articles on current research projects worldwide. It weaves together (from everywhere imaginable) different support groups and organizations for people dealing with the overwhelming battles HD families must fight.

         My participation, so far, consists of a few comments sprinkled here and there as I “get to know” this wonderfully open group of people. Their approach to giving a face and a voice to the individuals and families dealing with Huntington’s disease proves inspiring in its simplicity—We are here!

         On a recent status update, someone posted the discussion topic for Monday, December 12^th as dealing with, among other things, euthanasia. I cannot describe the heaviness in my heart when I think of this topic for this group of people. For families burdened with HD, discussing DNR (Do Not Resuscitate) forms only scratch the surface of the end of life decisions individuals and families must make. In the case of HD, clear advanced directives need to exist, and families need to double check and update changes frequently.

 When I initially researched HD, I sat with my mother and discussed options like tube feeding. She adamantly refuses this option. This year, at eighty-one, she’s begun having more difficulties with swallowing. We’ve changed her foods and puree some items on her menu. She eats in silence with the television muted. I no longer sit at the table to chat with her, but instead sip quietly as she eats her frequent meals. I watch her fatigue and monitor her carefully, and I feel pleasure that she can still feed herself. All of us know that eventually chewing and swallowing food will prove more and more difficult. Choking becomes a constant fear for those with HD.

Hypothetical discussions by churches, politicians, medical schools, or ethics classes on issues like euthanasia diminish to trivial when framed by the reality of a family suffering with Huntington’s Disease. We don’t deal with “what if” in some abstract form. The undeniable reality of the final stages of Huntington’s Disease means, from the first day of that positive test result, we must face our mortality with knowledge of the quality of life we must endure. With my mother refusing tube feeding, I know the possibility exists that I will watch her starve. I don’t know where or how I’ll find the strength to make it through that time when it comes, but I do know I’ll honor her decisions.
          My mother's condition remains better than most HD patients. Every holiday, I find myself confident that we'll celebrate together again next year. However, a future more than eighteen months or two years becomes a dimmer prospect. We spend our energy "smoothing" out my mother's days with as little stress as possible, and her care-giving has become the focus of our lives; but nothing will stop the inevitable progress of her disease.

What I do know is that our legal system takes away choice. The choice of a peaceful and dignified way for my mother to decide when to end her life. Years before she even knew she had HD, my mother had spoken with passion on the right to die. She expressed frustration once that she cannot expect the same respect for her end of life that she’s given to her own pets in the past.   She cannot have instructions that a doctor or medical official, with family members present, assist her in dying with the self-respect her life demands.

Edna Abrams July 2010

Copyright 2011 Elizabeth Abrams Chapman