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 care-giving has become the focus of our lives; but nothing will stop the inevitable progress of her disease.
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.
Copyright 2011 Elizabeth Abrams Chapman
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