Saturday, December 10, 2011

“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 12th 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 caregiving 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.

Copyright 2011 Elizabeth Abrams Chapman


  1. Elizabeth it was a pleasure to read your blog and can embrace you for your truthfullness of the real feelings we all share when faced with Huntingtons Disease. I am a team member to James Valvano film project "wehaveaface" I was my father-in-laws care giver for 10 years untill he passed away in 2007 and now the care giver to my husband who is approaching the end stages of HD like you have said, he has decided he does not want to be tube fed and request DNR to be in place, this is something I feel very strongley with that his choice to end his life with dignity is of the most importance to me that his wishes are met when the time comes. Like you I don't relish with watching him at the end stage of this savage disease but have seen so much suffering in last 16 years with two people very dear to me go through the challanges HD brings on a human being, I agree this is not what everyone feels is right but believe each individule should have the right to decide when enough is enough as we do as humans have with our loving pets. " our Pets don't have the choice we make it for them!" My husband should have the right to put in place the right to have his life terminated in the future while he is of a sound mind to make that decision that his life will end with the dignity to himself and his family ...

    International Resouce Director June Brown

  2. June,

    Thank you for your response. It is important for all of us to write about our experiences and to share with each other.

  3. Liz, I understand the dilemma. Both my parents had DNRs and Advance Directives prepared. After my father's death, Mom added a Do Not Intubate order as well. I am so glad we had talked about her wishes, as I had to enforce both the DNI and the DNR during her last weeks. I knew I was following her wishes and that gave me a sense of control that was seriously lacking otherwise.

    You and your mom have my positive thoughts as you negotiate this difficult path.

  4. Suzanne,

    Thank you for your experiences and thoughts. I'm glad we've talked about these issues ahead of time and that we revisit Mom's choices frequently to make certain she still wants the same thing, which she does.


  5. Liz I am so happy you have found us. I am 32. I have HD and so do two other siblings in early 30's also. We watched our father pass from HD. It was terrible. You kept asking yourself. Can it get any worse. And it does. I also work as a caregiver and have had many on hospice. It just breaks my heart that we cant let our loved ones or us die peacefully and with dignity. I too am apart of the Film Team and We Have A Face. I too agree that everyone should make there own decision on that.

    Crystal Zachary
    National Resource Director