(Editor’s Note: This is the second in a series of occasional posts featuring stories from members of Final Exit Network, originally collected for potential use for an online course on the right to die for the American Humanist Association Center for Education. Members were asked to consider two questions: 1) Why do you care about the right to die in general? 2) Why did you join FEN in particular? — KTB)
My friend and neighbor, aged 42, was dying of terminal breast cancer in home hospice care. She gasped for breath and could not focus her eyes on the family and friends gathered around. She was getting pain medication, but her very prominent physical discomforts were heart wrenching. Her husband puzzled out loud whether a gun would not be a gentler ending for the wife who had been the center of his life for the past two decades. That same summer, our faithful dog developed heart failure at a very advanced age and was beginning to reject the medications she had been taking for it. The family surrounded her with love as she lovingly passed away helped by the terminal medication of the vet. How I wished our dog’s peaceful, family-oriented death could be one experienced by all at the end of life. I searched for organizations promoting this, and FEN is reasoned, with expertise, promoting this goal. — Alida Westman
I helped care for my mother when she was diagnosed with Altzheimer’s. She went from being a loving, sweet natured and kind woman to being a violent, malicious stranger. She would punch my oldest sister when she attempted to have her bathe or shower. She hit me while I was driving with her. She would tell strangers that they were fat and ugly. She accused them of doing things to her that were figments of her imagination. When my daughter was taking my mother out for a walk, my mother picked up a large stick and was beating her with it. A stranger pulled over to help my daughter. I do know that my mother was no longer my mother. She became the illness that eventually took her life. I miss her terribly. I miss taking my girls to visit every Sunday, I miss our conversations, I miss our shopping together, I miss her wonderful cooking, I miss her out-of-this-world baking, I miss her love. I don’t miss the disease that took her away and left a horror in her place. If it becomes my fate to get Alzheimer’s, I want my family to remember me, not a disease. I will end my life if I am diagnosed. I would prefer to do it with dignity, in my own home, when I feel it’s necessary. My father died from congestive heart failure at age 72. The last several months he was demented, would not sleep, and was tormented by his skin itching horribly. He would have bowel movements in his diaper and spread it on the walls. He would lie in bed and moan all night long. He was terrified of death and would never have considered ending his life. I have congestive heart failure, and when my condition worsens, I will do what he could not. I am too selfish to wish to go through that horror and misery. We treat our pets with more humanity than we treat people. — Marie Bailey
I support Death with Dignity and especially Final Exit because my mother had Alzheimer’s before it was in the public eye. Medical professionals were not only unhelpful, they were dangerous and damaging, over medicatin and using the wrong medication, believing her wild stories to get attention. I am an only child so it all fell to me. They never listened to me although I had power of attorney. Looking back and knowing what I now know, she started symptoms when she was 70 (paranoia, loss of memory) and lived until 93. She hated every single day and could never laugh or smile. She was paranoid and constantly lied. She hated everyone. I do not want that for myself. I do not want to put that on my children (one of whom is a doctor). — Patricia Markovich
The Death with Dignity movement is indispensable to those who wish to avoid the agony of prolonged dying by choosing a non-violent manner of self-deliverance. This should already be a human right protected under our legal system—a choice that every citizen has to effect one’s own death, independent of the many justifiable and heartbreaking reasons for doing so. One reason particularly important to me involves the horrific ramifications of dementia, a concern intensified by my personal experience watching a parent, as well as studying patients with whom I worked, slowly waste away from Alzheimers Disease. The Hemlock Society of San Diego (HSSD) has been a reassuring presence in my life for many years, providing information that has relieved my concerns about a painful and/or undignified dying process and affording a crucial sense of personal control. Through HSSD, I learned about FEN, and both organizations have offered vital forums. While HSSD’s role in the movement is primarily educational, FEN also offers one-on-one counsel to those who request clarification about the details of self-deliverance. This assistance is a godsend for someone who requires greater expertise in implementing self-deliverance in a safe and non-violent manner. — Susan Millett
As a fee-only financial planner for two decades, I refused to discuss investments with new clients until we had all their estate planning documents and health care directives completed. A few expressed annoyance at the time, but later all expressed satisfaction and reassurance. A planner by nature as well as by training and experience, what could be more natural than to want to “plan” for the one certain event of one’s life? Thus, my wife and I have, for several decades, offered financial support to organizations helping people plan for end of life. So many organizations with so many permutations of names and “sub-names.” At one time we became so confused someone kindly sent us a “scorecard” to keep track of who we were and were not supporting. However, there was no confusion that Final Exit Network provided counsel and services other organizations were not prepared to provide; services filling gaps left by death-with-dignity laws and by court rulings. Thus, we willingly support FEN and let others know about it, when appropriate. — Edward Hartmann
These accounts are very, very reassuring. Many thanks for this blog!