Transcript of Dementia & Alzheimers Forum Presentation

Another situation also is occurring. Some people are now adding statements or sections to their Living Wills stating that if they are in the late stage of Alzheimer’s and can no longer feed themselves, they do not want to receive oral nutrition and hydration. Since oral nutrition and hydration is not considered a medical treatment that can be declined, there are some fears of liability around claims of elder abuse or neglect if this occurred. So the likelihood that this type of wish will be honored is doubtful at this point in time.

Even though we knew that it was legal for Alan to VSED, it took him time to make his final decision. While Alan was taking the necessary time to make his decision, I wanted to be thorough and cover all bases even though I knew that it was legal for Alan to stop eating and drinking. While we were exploring choices, Alan was the one of the first people in WA state to fill out the Alzheimer Advance Mental Health Directive. It was thorough and it protected both his rights and my rights as his wife while he was still alive.

Before Alan made his final decision to VSED, he wanted to explore one more Choice. We talked about this, and 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. I picked the most expensive and reputable facility. It would cost about $72K/year. The place was clean and cheerful; there were no locked doors; the staff was pleasant. But the people who lived there had frozen faces. They looked lifeless, and were heavily medicated. The person who toured us proudly said that their patients only take an average of 12 medications a day whereas more Alzheimer’s patients take 17 medications each day. Within a few minutes of our tour, we both had to sit down because we were both shaky and crying at what we witnessed.

As soon as we left, Alan turned to me and 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 he would 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 most difficult thing I ever had to do. I cried often, alone and with Alan, for months 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, “This was wrong. Why did he stop eating and drinking? He was still walking a little, talking a little, and able to eat. He was still mentally competent.” He still had some quality of life left. But for Alan, it wasn’t enough, and he knew he had to be mentally competent in order to VSED. It’s an issue for each individual to answer.

Some people wondered, “Is he committing suicide?” Is he doing this so Phyllis won’t have to struggle?

Suicide is about saying “NO” to life. Alan was saying “YES” to life, up to his last breath, on his terms. Suicide is violent and outside the natural order. It’s an emotional decision and perception and usually done with emotional imbalance. It hurts one ’s self and others, and has to be done secretively. For Alan, this was about self-love, peace, and compassion. He was grateful for the good life he had and for having the choice to VSED. Conscious dying, which is the way Alan died, is about honoring life, up to the last breath.

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 two months before he died, “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.”

Also about six weeks before he started his fast, I was visiting a close friend in Arizona, and I called Alan twice each day. One night, while we were on the phone, he told me that as he was falling asleep, people who have passed over were waiting for him. He said “what I see is a living, moving picture; not a static picture.” He says he thinks his family is waiting for him, his mother, his father, his aunts and uncles. He says this in soft, relaxed tones, with absolutely no fear. He says the experience is real.

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