Storyteller Spotlight: Wendy Soderlund and Edward Pultz
The Missouri couple has outlined a detailed plan for voluntarily stopping eating and drinking, or VSED, as an option for responding to Wendy’s progressing dementia.
Nov 22, 2022
Married almost 49 years, Wendy Soderlund and Edward Pultz sensed signs of Wendy’s dementia long before seeking an official diagnosis in 2021. “It feels like something I’ve just known for a long time,” says Wendy. My mother had dementia, as did her father, and his mother, my great-grandmother. According to family history, she became a different and very difficult person as a result. Fear of changing the way her great-grandmother did motivated Wendy to seek a way to avoid a similar decline.
Formerly in charge of the educational component for the Head Start program in all of southeastern Missouri, Wendy retired after her memory issues began affecting her job. “I started to notice that my ability to recognize things or people was deteriorating. For instance, I would meet with site managers monthly for training, and I would bring a packet of material to give to each of them. One time they were all sitting in a circle, and I couldn’t recognize who was who. So I said, ‘Why don’t each of you just come up here and get your packet?’ That was when I knew that by the end of that year, I was retiring.”
Eight years before Wendy retired, she started purchasing and fixing up houses to rent in Farmington. She moved and removed walls and added bathrooms. She got to know excellent subcontractors, as well as hired a woman who has developed excellent remodeling skills. Wendy now has 24 rental houses.
Wendy says, “Historically I have been good on the computer and have made really good at spreadsheets to keep track of finances. However, now I can’t hold two numbers in my head at the same time. Since I really like math — I used to go to math tournaments when I was in high school and have an M.B.A. — it’s driving me crazy. Luckily, our daughter is really good at math, so she took over financial management and our son took over property management.”
Back in 2007, Wendy wrote to Compassion & Choices with questions about end-of-life options for people with dementia, partly because of her mother’s experience and partly in anticipation of having Alzheimer’s herself. “The response and materials I received were my initial introduction to VSED. Edward and I recently watched the Compassion Choices webinar on VSED — twice. We then read portions of Dr. Timothy Quill’s book Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death. We talked a lot about it, and based on Quill’s book, Edward suggested I make a video about my wishes. I tried, and it was a no-go. I couldn’t remember what to say. So one morning, I typed up a very detailed advance directive plan to implement VSED.”
Spring of 2022 Wendy and Edward traveled to Tucson on an Amtrak train — on Wendy’s bucket list — to meet with two of Wendy’s sisters. She had already told both of them about her dementia and interest in VSED. As soon as they arrived, Cari, who Wendy shared a bedroom with throughout their childhood, said, “I’ll be there.” Both sisters were incredibly supportive, as is a third sister.
Wendy’s plan starts with beloved activities such as yoga, watching birds from the porch and listening to songs including those she treasured from her childhood years as a Camp Fire Girl. Her family will be invited to come and go as they wish. They have found a very supportive local doctor, who has contacted a local hospice program.
The big question mark is around timing. “That’s the hardest thing,” says Wendy. “I have to be able to make the decision. Alzheimer’s causes people’s brains to atrophy, and some days I physically feel my brain shrinking. It’s just pressure; it doesn’t hurt. But looking at the effects of brain loss is very scary to me. I worry that I won’t still be the person that I am now. One way to determine when it is time for my life to end would be if I display inappropriate or scary behavior. I don’t want my grandchildren to remember me like that. With Edward’s help, that is when I will know it’s time for my life to end.”
For now, Wendy fills the days with enjoyable pursuits like her book club — her participation aided by marking pages with detailed post-it notes — as well as spending time with her and Edward’s young grandchildren, and studying poetry. Several, such as Ralph Waldo Emerson, had dementia. “She knows more about poets than anybody else I know,” says Edward.
“I have one poem, Invictus by William Ernest Henley, which is about responding to hardship,” Wendy says, “And it ends with these two lines:
I am the master of my fate;
I am the captain of my soul!
With the VSED option I feel that I can be the master of my fate, the captain of my soul.”