Transcript of Dementia & Alzheimers Forum Presentation

I received a phone call from my mother in February 1987, just a couple of days before I had my first date with Alan. She asked me to get to their house as soon as possible. At this point, my mother had been a caregiver for my father for many years through a heart attack, prostate cancer and now Alzheimer’s. Very little was known about Alzheimer’s and there were almost no support systems. My Mom would sleep in a separate bedroom, and she barricaded the door with furniture in case my father tried to come into the room to harm her. He had threatened her life on previous occasions. She called 911 each time. He was always asleep on the couch when the police arrived, and had no idea that he threatened my mother. That is the nature of this horrible disease.

So Alan and I both knew what lay ahead for Alan if he lived with this horrible disease. Although I still had the DWD prescription in my files, I knew it was illegal to use it for Alzheimer’s. The DWD prescription cannot be used with most neurological disease.

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 beautiful celebration.

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

That was when one of the chaplains from Compassion & Choices told me about Voluntary Stopping Eating and Drinking or VSED. I did some legal research about VSED that included a long paper by Thaddeus Popea nd Lindsey E. Anderson in the Widener Law Review. He is a bioethics attorney and professor. I shared all this information with Alan. This became an option for him.

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.

Only a mentally competent person is capable of the consistency and discipline that is required to successfully VSED. Even the decision of a mentally competent person to VSED, who is not already very close to death, is often misunderstood or misinterpreted by hospice and long term care providers. This was the case with our local hospice, PeaceHealth Whatcom Hospice in Bellingham. They said they would not provide hospice to my husband until he was in the late stage of coma. I felt my husband would suffer if this occurred. Whatcom Hospice is Catholic owned by Peacehealth, and I believe this is one of the reasons they would not accept Alan.

Recently, I was at an event for the premier showing of the documentary film, “Speaking of Dying.” I was one of the people interviewed for the film, and a hospice medical director spoke on a panel with me when the film was over. After the presentation, I asked her if her hospice, Evergreen, located near Seattle, would have accepted Alan. She said “yes,” probably on the second day of his fast. Evergreen is not a Catholic owned hospice.

It’s important to know that many health lawyers and ethicists believe that a decision to VSED by a mentally competent person is legitimate and deserving of respect.

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