Transcript of TEDxBellingham Presentation

Alan knew he was declining quickly. He was sleeping at least sixteen hours a day. Now he made his third unusual choice. He wanted to be at his own funeral. He used to laugh at how backwards it seemed that funerals happened after someone died. Alan wanted to be present to all that love and attention. So six months before he died, while he could still speak fairly well, we held a Celebration of Life and many friends joined us. Alan talked. I talked, and many others shared their affection with Alan. It was a magnificent Celebration.

So Alan had his funeral, and he was certain he didn’t want to live into the late stages of Alzheimer’s. But what choice was left to him?

Then was when a friend told us about Voluntary Stopping Eating and Drinking or VSED. We also learned that the Supreme Court ruled in 1990 that any individual has the right to refuse unwanted lifesaving medical treatment. And the Supreme Court has asserted time and again that we each have a right to refuse hydration and nutrition. I did more research about VSED and shared it all with Alan. This became an option for him.

Alan wanted to explore one more Choice. He wanted to visit a good dementia facility. We were fortunate because we had an excellent long term care insurance policy that would pay for his care. The place was clean and cheerful; there were no locked doors; the staff was pleasant. But the people who lived there had frozen faces and looked lifeless. Within a few minutes of our tour, we had to sit down because we were both shaky and crying.

As soon as we left, Alan said, “I will never live there.” That was his fourth unusual choice.

Alan knew he could go on living for more years. But he also knew that his brain and his mental faculties were diminishing quickly. So he made his fifth unusual choice. He decided to stop eating and drinking so he didn’t have to live into the late stages of Alzheimer’s. I told him I would support him through this process even though this was the hardest thing I ever had to do. I cried often, alone and with Alan, anticipating the loss of my best friend. I was in an almost constant state of anxiety wondering how this would finally resolve.

After Alan made his decision, people in the community began to hear about it. Some people became uncomfortable and said, “This is wrong.” And some of you may be thinking, “why did he stop eating and drinking? He still had some quality of life left. A lot of people are like this as they age. He was still walking a little, talking a little, and able to eat. He was still mentally competent.” Some people wondered, “Is he committing suicide?” Is he doing this so Phyllis won’t have to struggle?

But Alan didn’t see this as right or wrong. For him, it was a choice about self-love, compassion and peace.

Once he decided to be Not Here By Choice, Alan lived in a state of deep, calm accepting presence. He spoke these actual words to me, “I am comfortable and at ease with everything. I just feel great all the time, even when I’m tired. I’d love to help people reduce their suffering. People notice how happy I look. I think that’s important because I’m really at the end of this life. I’m sure it goes on. I don’t know how to share this with other people. It’s up to you Phyllis to do that.”

Community has always been very important to Alan and me. Throughout this process, we made our lives public. We knew we were paving the way for others to make similar choices.

After this intense process was over, and Alan was no longer with us, many people came forward and expressed what a profound effect Alan’s Choice had on them. People perceived Alan’s actions as loving and courageous and a demonstration of his civil rights. They saw dignity in his death and some felt deep relief knowing that this option was available to them in the future if necessary.

Alan had to be mentally competent in order to be able to follow through with his decision. We felt that in a couple of months he would no longer be mentally competent and wouldn’t have the awareness to follow through with his decision. So he decided to pick an exact date to start the process of not eating and drinking.

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