On July 29th I published a blog called I Want To Die With Dignity With Alzheimer’s. I had just done an interview with Deborah Kan of Being Patient regarding my desire to do so. I was frustrated because nowhere in the United States will they allow you to do this if you have a cognitive disorder like Alzheimers, Lou Gehrigs, or Parkinsons disease.
Since that time, I have reluctantly become a Right to Die advocate for people with Alzheimer’s disease. I have done extensive research, joined countless Right to Die organizations within the United States and several other countries. I have spoken to two agencies in Switzerland as well as the doctors in the Netherlands about pursuing it there. Switzerland is an option but I would need to do it soon because they require that you be cognitively capable to administer the drug yourself. That means I would need to do it within a few years. Canada is going to consider it within the next 18 months.
I also did a Courageous Conversation with Teepa Snow from the Positive Approach to Care Organization regarding a video I made documenting why I want to do it and how frustrated I am that animals are treated more humanely than humans. My dog was put peacefully to sleep when it was his time, but I don’t have that option. If I make the decision now, and put all the appropriate legal documents in place stating this is what I want to when I reach a lack of quality of life (and clearly defined by me while cognitive), I would like the opportunity to do so.
I was very emotional when I made this video below. I had must put my end life life plans in order. I had just finalized my will, trust, advanced directives. I also had just made plans to donate my brain, met with the coroner and funeral home, planned my funeral and purchased my urns. I’m a planner……I want everything wrapped up and organized by me so my husband doesn’t have to worry about it. All of these things are difficult to do, but even more difficult for someone of a fairly young age of 59.
Since my original blog post regarding this topic on July 29, 2020 I have received over fifty contacts from people with cognitive disorders who would also like to die with dignity. They are looking for assistance. Several indicated that if they don’t find it they will resort to suicide if they can’t find a way to die with dignity. Many of them already have it planned out.
Talking about the desire to die with dignity seems to be taboo in the Alzheimer’s community. How sad is that? That is why I am speaking out. Sticking your head in the sand does not make it go away. It’s a shame that people have to make clandestine plans, suffer in silence rather than get the support and peace of mind that they need and deserve in the final years of their life. I truly recognize that medically aided dying is not for everyone, but it’s an option that many of us want.
Because I don’t have any good avenues available to me right now, and I am NOT suicidal, I will work on option A (keep researching) and plan B: make plans for a memory care unit. You can be damn sure though that I am NOT going down without a fight. Alzheimer’s is not going to take me any sooner than it has to.
Not today, Alzheimer’s Not Today!