NORTHAMPTON — In the face of an incurable and progressive illness, what would your next step be?

One Northampton woman and her late life partner were faced with that situation a few years ago — and now, there’s a book, “Herself to the End,” about their experience.

Fran Volkmann’s late partner, Joan Cenedella, was diagnosed with Alzheimer’s disease in 2021. Above all, Cenedella was concerned with losing her identity and her sense of self as the disease progressed. Rather than move into a care facility (or undergo a long period of caretaking at home) and lose all of her mental faculties, Cenedella chose to end her life through a process called “VSED” (pronounced “VEE-said”), which stands for “voluntarily stopping eating and drinking.” The book chronicles the process that she, Volkmann, and a key group of family members, medical professionals, and loved ones took to help Cenedella from her diagnosis to the end of her life.

Cenedella started her VSED on Monday, Jan. 23, 2023. She died 11 days later, on Thursday, Feb. 2, at 86.

Volkmann chose to write a book about the experience in part as a tribute to her beloved partner, but also because helping Joan undergo the VSED process has transformed her own life.

Besides that, she wanted people to know about VSED as an end-of-life option. Even major websites about Alzheimer’s don’t always mention it — one in particular, she said, “talks about some medications, none of which do a lot. It talks about keeping your person at home. It talks about long-term care; it distinguishes between memory care and long-term care. But it’s as if that whole set of options related to deciding that you don’t want to go down that road — those are not on the table. You come away from that site feeling as if you know everything you need to know, when, in fact, you don’t.”

Volkmann also points out in the book that VSED is different from suicide. As author Phyllis Shacter, quoted in the book, wrote, suicide is “saying a giant NO to life.”

“Joan loved her life with every ounce of her being,” Volkmann writes in the book. “She did not want to die. We both wanted above all else to continue to live the happy and fulfilling lives that we shared. Joan felt the decision to die had been made for her, in the form of the Alzheimer’s diagnosis. Her decision was not whether to live or die, but how and when to die.”

VSED, she noted, is also different from medical aid in dying, which requires assistance from a physician and requires that a patient have less than six months to live.

“Nobody at any time hastened Joan’s death,” Volkmann said in an interview. “We didn’t help her die. We helped her to die peacefully and gently.”

Before the process began, Cenedella and Volkmann talked through all the logistics and possible complications. If, for instance, Cenedella changed her mind, they would immediately stop the process and provide her with food and water. Before she began, she recorded a video reminding herself of her reasoning for choosing VSED and asked her core group to play it for her if need be. Likewise, if she did ask for food and water, they were supposed to say to her, “Joan, I can bring you what you ask for, but you need to remember that this will prolong your life and the VSED process. Do you still want me to do this?”

Cenedella never changed her mind, though. In her end-of-life wishes, written in 2019, she wrote, “Quality of life means everything to me at this point. There are those who want to stay alive no matter what. I am not one of them.”

Volkmann, who turns 90 this month, also said that helping Cenedella undergo the VSED process had given her a stronger sense of comfort with her own mortality.

“I’ve heard this among my friends here at Lathrop: none of us are that frightened about dying anymore. We’re all old,” she said. “...We’re a bunch of elderly folks, and we say to each other, ‘I don’t fear dying. What I fear is what happens between now and then — some long, horrible, drawn-out, painful thing.’”

“And yet, that’s exactly what modern medicine is designed to do — not to provide a painful thing, but to extend our lives,” she added. “So now, I feel like I have a way out if I really need it. I don’t intend to just do it lightly. But I feel as if I don’t need to go through long suffering, which is transformative for me. And other people who’ve read the book say the same thing. They say, ‘It brings me a kind of calm.’”

Ultimately, she said, readers have taken away the idea that “Herself to the End” is “a book about life and love more than it’s a book about death.”

“What I think I hope for in the book is a message that we have agency. We can make choices about how we want to respond to some kind of a terrible diagnosis like that. And we don’t have to break the law or go to Switzerland or put a bag over our heads,” she said. “We don’t have to do any of those things. What we have to do is pull together a support system.”

“Herself to the End” is available on Kindle and at Broadside Bookshop in Northampton.

Gazette Staff Writer Carolyn Brown can be reached at cbrown@gazettenet.com.