- Not Here by Choice: My Husband’s Choice About How and When to Die
This is a story that could be about you because illness and end of life issues and ultimately death come to all of us. I share this story about love, courage, advocacy and choice with you, with the hope that it contains information that will give you greater peace of mind.
From a place of deep sadness, yet buoyed by the strength and commitment of our love for one another, I became my husband’s advocate so he could follow through with his decision to voluntarily stop eating and drinking (VSED) rather than live into the late stages and indignities of Alzheimer’s disease. This was his choice, and his right. I supported him every step of the way. After nine–and–a–half days of going through the VSED process, he died peacefully at home on April 19. 2013.
Two weeks before he started the VSED process, he was sitting at the breakfast table and I noticed he was crying. I said, “Honey, what are you feeling?” He replied tearfully, “I’m not afraid of dying. I’ve lived a good life, but I want everyone to know about VSED.” I spontaneously replied, “You’ll just have to trust that I’ll be your vehicle.”
We had a beautiful marriage for twenty–six years. It was based on mutual acts of cherishing, support, partnership, love and laughter. Alan was a brilliant man, a Harvard graduate who took the first computer course ever given in the world. He was a jazz pianist since his early youth. After retirement he did the training and certification necessary to become a Neuro–Linguistic Programming (NLP) trainer and practitioner.
We both began to notice cognitive changes in Alan as early as 2007. In 2007 and 2009, a neuro–psychologist examined Alan and said he was fine. He was finally diagnosed with Alzheimer’s in November 2011.
Both Alan and I were familiar with this disease. My father and mother–in–law each had it for more than ten years. I rescued my mother when she reached her limit in care giving. I had to place my father in a board and care home in 1987 at a time when there were few choices for Alzheimer’s patients. My mother–in–law died a shadow of a person with no physical capacities.
We knew what lay ahead if Alan continued to live with Alzheimer’s, but we did not yet know that he had another choice. He was clear that he did not want to die of Alzheimer’s. In his Health Directive, he stated that he did not want to be treated for any illness, hoping that he would get an infection or pneumonia and would die from that. That never occurred.
I contacted End of Life Washington (previously known as Compassion & Choices of Washington) to find out about the legal choices available to end one’s life for someone in Alan’s position. I inquired about the Death With Dignity Law, which was relatively new at the time in our state of Washington. Most importantly, I learned that Alzheimer’s and most neurological diseases do not qualify for the Death With Dignity law.
Two qualifications for the Death With Dignity law are that the person has to be in the last six months of life and has to be mentally competent [End Page 94] and able to self–administer the lethal medication that would end his or her life. When an Alzheimer’s patient is in the last six months of life, he/she is no longer mentally competent.
A volunteer chaplain from End of Life Washington suggested that I do some research about VSED, voluntary stopping eating and drinking, as a legal option for Alan to end his life. Neither Alan nor I had ever heard of it. Fortunately, I found Thaddeus Pope’s article online, written with Lindsey Anderson, on legal ways to die called, “Voluntary Stopping Eating and Drinking: A Legal Treatment Option at the End of Life,” October 7, 2010 accessed from http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1689049. I shared...