Jean Had Both Alzheimer’s Disease and Lewy Body Dementia … And a GOOD DEATH

(Jim Rough is a seminar leader and Director of the Center for Wise Democracy. He is dedicated to bringing forward a set of social innovations, by which to facilitate “Wise Democracy” into being nationally and globally. See www.WiseDemocracy.org.)

Two years before Jean’s death the neurologist told us that Jean had both Alzheimer’s Disease and Lewy Body Dementia. We knew her mental capability was flagging, but this official diagnosis was helpful to us both. Jean had already made up her mind that when she was in danger of losing consciousness, she would stop eating and drinking.

We are lucky in the State of Washington to have “Death with Dignity,” the option to take a pill that will terminate one’s life. But this option wasn’t available to Jean because two doctors must sign a paper saying that you are likely to be dead within 6 months. So people with Alzheimer’s Disease usually don’t qualify. The only option seems to be the usual “caregiver conveyor belt,” a slow, awful trip to a lousy death. But Jean was very familiar with that path.

As the caregiver to her mother when she had Alzheimer’s Disease, Jean was exceedingly compassionate at every phase, helping her mother feel comfortable and happy all the way to the end. For instance, she helped her mother feel useful by creating a set of faux laundry clothes that never actually got washed. But her mother would fold them over and again.

Then later Jean was caregiver to her father who reached the age of 94 and who qualified for “Death with Dignity.” But instead of choosing Death with Dignity, he just stopped eating and drinking. At the time he didn’t know he was choosing a strategy that had a name: “VSED” (Voluntary Stopping Eating and Drinking). He just preferred that path. He was supported by hospice throughout his journey. After he died, Jean and her sister both looked at one other and said, “That’s how I’m going to die.”

So, unlike most dementia patients, Jean knew there was another option, different from the mainline “caregiver conveyer belt.” She knew she could always choose to stop eating and drinking. But she wanted the help of hospice. And that was the tricky part because she didn’t technically qualify. Again, she needed the word of two doctors saying she would likely die within 6 months.

But Jean remembered her father’s experience with hospice … the hospital bed, the music, the massages, the nurse visits, the pain relief, and the overall sense of community support. So she prepared a letter to her doctors and to hospice, and met with local medical people and hospice providers enough so that they understood she was serious. And they wanted to help. They just needed some way to meet the official standards. Ultimately with Jean as the spur, our local medical community developed a set of guidelines to offer to Alzheimer’s patients. Today, unlike most places, these patients are taught about VSED as an option, and they know hospice will support them.

The next big question for Jean and me was “when to start?” This was really hard. Jean knew she had to be conscious enough to complete the journey. Of course, we all wanted Jean to delay VSED as long as possible. But a sense of urgency descended on Jean one day when she took a nap and woke up not recognizing where she was, nor even who she was. Fortunately, this state of mind didn’t last more than an hour, but it scared her. So we chose to start earlier than we had been thinking. Jean had developed a plan for when the doctors would sign her papers, who would be on her support team, when the hospital bed would arrive, when the grandchildren would come, and when she would likely die. Before we started, Jean helped me learn about our finances, what’s in each drawer of the house, which plants in the garden need need more water, and where to place her ashes.

Then on the afternoon of June 13, 2019 we sat on the back deck and ate our usual lunch together. It was oddly no different than any other lunch, except that we both knew it was Jean’s last meal. No eating or drinking after that. A couple of days later, on Friday before they closed for the weekend, the hospital bed arrived. Jean moved into it with her special pajamas. She had designed the room with windows that went almost to the ground. She loved having the bed close to the window so she could lie there and see the garden. That weekend our son and his family came to be with her. The “grandgirls” took turns pushing her and the wheelchair around the house. Our violinist neighbor played a favorite song of Jean’s, “Ashoka Farewell.” And the Threshold Singers from hospice came to sing. I loved how, even though they were performing, they made room for Jean to be the centerpiece, not them.

Our 5-person team took turns sitting with Jean over the next 9 days. All of us were holding her in our thoughts as she weakened physically and mentally. The whole time was a celebration of her life with all of us gathered around. She passed in the evening, around 1am. She didn’t want to die on her sister’s birthday or the Solstice, June 21. She would have been glad to know that she made it to June 22. In many ways her passing was a celebration of life. Not just her life, but ours as well.

Jean’s memorial webpage and video are available at https://www.wisedemocracy.org/jean-rough-memorial.html

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers
who support mentally competent adults as they navigate their end-of-life journey.
Established in 2004, FEN seeks to educate qualified individuals in practical,
peaceful ways to end their lives, offer a compassionate bedside presence and defend
a person’s right to choose. For more information, go to www.finalexitnetwork.org.

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