Transcript of Dementia & Alzheimers Forum Presentation

From what I can tell, he says all this with certainty, with complete ease, with gentleness in his voice, as if he were almost already living this reality and as if this is something he looks forward to. I ask him, “are you beginning to look forward to what comes next more than what you have now? He says, “yes.” I asked him how he thinks I’ll do after he is gone. He says, “I don’t know.” Then he adds, “I think you’ll be fine. You are so social.”

He said he thinks people have a lot of control over when they pass. And he said with certainty that he would be able to communicate with me after he passes.

About three weeks before he started the VSED process, with tears in his eyes, he said, “Since I don’t know about this, probably not a lot of people do. And it sounded horrible. Now that I’ve investigated it, it doesn’t sound horrible, and I’m going to VSED.”

Alan had a strong will to survive. I checked in with him every step of the way to make certain he didn’t change his mind. In fact, I asked him so often that he finally said to me, “Please don’t ask me anymore. I’ve made up my mind.”

Although I supported Alan’s decision, it was completely heart breaking that I was losing my husband. I wanted us to grow old together. I wasn’t going to get to spend the last chapter of my life with him. I cried a lot, and we cried together. I did my best not to cry often in front of him because I didn’t want him to be burdened by my grief. Of course he still knew how difficult this was for me. But he had to focus on his decision. He knew that I was on my own journey, and I would have to deal with this in my own way. I had professional support and community of friends to help me, and I knew that the only way to get over the depth of the grief was to go through it and experience it.

Even though some people were uncomfortable with Alan’s decision, the truth is that 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 is 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.

Alan had identified when he would know it was time to start. He had been the keyboard player for seven years at our Center for Spiritual Living. That Center represented love and community to him. When it no longer had the energy to go there anymore, he said he was “done.” The last time he could go there, he came home and went to sleep for about six hours. At this point he was sleeping about 16 – 18 hours a day. He also had some Parkinson’s symptoms and could not walk well. He was losing functions quickly.

So we consulted with others, and he decided to pick an exact date to start the process of not eating and drinking. Several days before Alan started, we met with our elder care attorney again and she wrote up papers that were notarized to protect me, his doctor and the two caregivers.

Alan and I had both been seeing a good doctor for some years. For many months, prior to him starting the VSED process, we both talked with her privately about Alan’s wishes. When our local hospice said they would not help Alan until he was in the end stage of coma, I felt he could suffer greatly if this occurred. So then I contacted our doctor. She knew how important this was to Alan. She was aware of how he was declining physically and mentally quickly, but also knew that he was still mentally competent. She respected his decision and came forward to make sure Alan was comfortable and did not suffer during the VSED process. And, along with two wonderful caregivers, Alan had excellent care.

On the morning that Alan started, a good friend came over and blessed the inside and outside of our house. I had also set up a beautiful altar in our living room and this was next to Alan’s bedroom. There were beautiful flowers and symbols on the altar that were meaningful to Alan’s life. I had bought 24 hour candles and had the candles burning throughout his passage.

He told the doctor at the beginning of the process that he wanted to remain as conscious as possible with medication only on an as needed basis. He had only small amounts of medication for the first several days. As he got more dehydrated and his body began to shut down, the doctor made sure that he was kept comfortable with the proper medication. I didn’t want him to suffer at all.

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