ERA YES! Mom in DC, 1978
Let me tell you about my mother.
She is an amazing woman. Not an easy woman, but then neither am I, as my wife would undoubtedly tell you; as my daughters will likely someday agree. My mother is a strong woman–a brave, independent woman who is determined to face death in the exact same manner in which she has lived her life: on her own terms.
At seventy-three, my mother has lived her seven-plus decades boldly. As avid outdoors people, she and my father instilled in my sister and me a lifelong love of adventure. Before we could even walk, our parents took us car camping in and around Southwest Michigan. As we grew older, our family adventures expanded to include dune running on Lake Michigan beaches, camping trips to Northern Michigan, canoe excursions along Michigan waterways, and epic road trips to the East Coast, the American West, and, memorably, across Canada and Alaska.
Backpacking in Grand Teton Natl Park, 1981
We climbed mountains in the Grand Tetons, hiked the shores of mountain lakes in the Canadian Rockies, explored the tundra of Denali National Park. We marched on Washington for the rights of women and veterans, fished for perch and rainbow trout in Michigan lakes and rivers, and watched the Alaskan sun set and rise again in the space of a single hour on the night of the summer solstice. There was laughter and yelling, but not in equal proportion. Like many families, there was happiness, and dysfunction, and abiding love.
My mother was not an easy woman or an easy parent to live with, but she was always completely herself—someone I have loved and respected even as I’ve struggled at times to escape her shadow.
She was herself; the choice of tense is deliberate. Over the past decade, my mother’s sense of self has altered significantly. In 2007, at the age of sixty-three, she was thrown from a horse in Wyoming and broke two vertebrae in her back. Within six months of the accident, my sister and I noticed that she was beginning to change. Her memory, never her strongest suit, began to slide noticeably. She experienced abrupt mood changes, got lost more easily, and demonstrated other early signs of dementia.
My mother’s mother
We were intimately familiar with these signs because my mother’s grandmother, mother, and older brother had all been diagnosed with—and eventually died from—Alzheimer’s disease. Knowing that the condition tends to run in families, we weren’t surprised when my mother was eventually diagnosed with mild cognitive impairment (MCI), sometimes described as a precursor to Alzheimer’s. Still, her mother and grandmother had been older when dementia began to rob them of their dignity and independence. My mom was only in her early sixties when her symptoms started, and none of us was prepared to lose her so soon—including her.
We were fortunate that her cognitive impairment plateaued and remained stable for many years. But a few years ago, it became clear that the plateau was shifting beneath her feet whether we were ready or not. Kris and I asked my mom and dad to move closer to us so that they could help us with our growing family and we could help them, in turn, with what the next stage would bring.
World Cup 2015, Vancouver BC
And so, in the summer of 2015, we helped them find a condo on a hill overlooking a beautiful lake not far from our house. My parents moved to Washington State during the first week of July—just in time to accompany us to the World Cup final match in nearby Vancouver, BC. Another rousing adventure for the family scrapbook.
Only a few weeks later, my mother fell during a hike in the North Cascades. She and my dad were a mile from the trailhead when she missed a step and face-planted into the boulder-strewn trail, sustaining injuries that left her unable to walk. A group of young hikers happened upon my parents, and four of them took turns carrying her fireman-style back to the trailhead. An ambulance met my parents halfway home and transported her to the hospital, where she was diagnosed with a broken leg and concussion. It was her seventy-first birthday, and she realized then, she told me later, that her days of hiking in remote wilderness settings were numbered.
After her leg healed, she seemed to stabilize again briefly. But last summer, a year after her hiking accident, we noticed the decline accelerating again. She was still able to walk on even surfaces without difficulty, but she was increasingly unsteady on the trails she loved to hike. She was still driving, but she was getting lost repeatedly. While she had never loved to cook, she had always enjoyed baking, and now she was doing little of either.
Mom helping Alex read
Most significantly to her quality of life, she was having trouble reading. A self-described “voracious reader” and a writer in her own right, she was now struggling to retain any written material more than briefly. Until recently, my mother had read everything I’ve ever written and was, in fact, my earliest champion. She was the first person to read and comment on early versions of Solstice, Beautiful Game, and In the Company of Women, and helped shape me into the writer I am. I knew her dementia was getting worse when she failed to read either of the novels I published in 2016. What was more, she and my dad knew it too.
There was something else we all knew: My mother was (and still is) adamantly opposed to nursing care. She watched her mother and brother die in dementia wards and has said for more than a decade that she would rather die than go into a nursing home. Literally. So when my parents learned last fall about a local workshop on dying with dignity, they immediately signed up, eager to find out what options were available in their new home state.
At the workshop they were disappointed to learn that Washington’s Death with Dignity Act does not cover Alzheimer’s patients. Those who are in the early stages of dementia are ineligible to request life-ending medication because they do not have an immediately terminal diagnosis, while those in later stages have cognitive impairment that renders them ineligible for the program. The only legal options available to Alzheimer’s patients, even here in a Death with Dignity state, is traditional suicide during the early stages of the disease or something known as VSED: Voluntarily Stopping Eating and Drinking.
At first I thought that VSED sounded barbarous, inhumane. Voluntarily dying of starvation and dehydration? Um, no thank you. But then, a month after the workshop, my parents invited me to a meeting with a local “death doula” who they had seen speak. The doula provided a ton of information about VSED, and my opinion began to change. If done correctly with a doctor’s support, on-call nursing care, and hospice medication, VSED can be a peaceful, empowering way of escaping an agonizingly slow dementia death sentence.
End of Life Washington, an amazing resource
“That’s what I want to do,” my mother declared. “So how do we do it?”
The doula pointed us to the End of Life Washington website for more information and important legal paperwork, and then suggested we work with a local elder law attorney who is a VSED and Death with Dignity advocate. In addition, she recommended we find out if my mother’s geriatric specialist would support her decision to hasten her own death. If not, we would need to change to a physician who would.
We were lucky on several fronts. Coincidentally, my parents and I were already clients of the attorney the doula recommended. Also fortuitously, my mother’s physician had assisted other patients who chose VSED and readily agreed to help us determine when the right time would be for my mother to start the process. She also agreed to prescribe medication that eases anxiety and physical discomfort during the VSED process—an absolute must to avoid undue suffering during the days or weeks it can take for the body to completely shut down.
Is VSED a pain-free way to die? Most experts say it isn’t, not completely. But will it allow my mother to remain in control of her own life until the end? Absolutely. Will it allow her to escape the steady cognitive decline of Alzheimer’s and the reality of facing her last days in a dementia ward, something she considers a fate worse than death? Yes, it will. That’s the whole point, really.
The attorney instructed my mother to write a statement of intent to do VSED while she was still fully competent. Here are some of my mother’s reasons for choosing VSED, in her own words:
I do not wish to live in a long-term memory care clinic. I watched my mother deteriorate from a vital, active first-grade teacher to simple memory loss to a completely lost soul wandering the hallways of her assisted living facility, unaware of where she was or who her children were. Many hearts were broken, including hers… I worried about my mother every day because she was being cared for by strangers. I do not wish to expose myself or my family to that risk.
Phyllis Shacter, a Western Washington resident who helped her husband carry out VSED in 2013, has written a book that describes this path in detail: Choosing To Die: A Personal Story. Her website, phyllisshacter.com, also includes many good resources, including a link to this incredibly powerful, moving video in which a nursing care provider explains why she supports VSED for dementia patients:
So this is the path I am on with my family right now. Since we finished the legal arrangements last spring and obtained verbal commitments from my mother’s attorney and physician to assist with the VSED process, we have been able to focus on enjoying life without worrying as much about what the future holds.
Mom and Dad in Alaska
My parents traveled to Wyoming and Alaska this summer, two of my mother’s very favorite places, and they have continued to explore Western Washington and the Olympic Peninsula by ferry, car, and foot. It’s very much an exercise in Zen, I have to admit, and I am not always up to the challenge. I have found comfort in spending time with my wife and daughters, in hiking with our dog, in returning to meditative practice. Live in the moment, be in the moment, be the moment—that’s pretty much the goal right now.
It isn’t easy, of course. Like my mother, I have good days and bad days. There are moments when the slightest negative interaction sends me into a grief spiral that I know has little to do with the conflict at hand and everything to do with the fact that my mother is dying; that one day sooner rather than later I will likely be seated at her bedside holding her hand as she lets go of this life and transitions to whatever comes next. But my mother is at peace with her decision, and despite her increasing impairment, she is leading the way for the rest of us. She is tackling Alzheimer’s with the same strength and refusal to compromise that she has brought to every stage of her life, including raising my sister and me to be strong, fierce, proud women just like her.
Perhaps unsurprisingly, my writing interests have shifted in the past year. I find myself attracted more to stories and characters embroiled in life and death situations, as well as to various memoir projects—basically, trying to make sense of the past and present through story-telling. I’ve been writing about my mother and father, about the steps we’ve taken and the obstacles we’ve encountered, most of our own making. I’ve been writing about my same-sex marriage in a country where same-sex marriage only became universally available two years ago, even as I watch my parents’ fifty-two year union near its inevitable end. I’ve been writing veritable rivers of words, jotting down snippets of scenes and conversations, recording ideas and themes to include in one project or another. And yet I haven’t published a book this year, even though I quit my day job eight months ago. I haven’t finished the third book in my soccer trilogy, I haven’t finished the sci-fi novel in progress, and I haven’t finished either memoir yet.
I will. I know I will. I’m just not sure when. I’m trying to be okay with that fact; I hope it will be okay with my readers as well.
Mom and the girls
For now I’m trying to enjoy walks around the lake with my mother and daughters; weekend lunches and trips to the ice cream parlor with the whole clan; and Friday night pizza and movie nights at our house, the twins snuggled up on the love seat with Grandma and Grandpa, Alex and the dog snuggled up on the couch with Kris and me. I’m trying to be in this moment for as long as my mother is still here because one thing is certain: She won’t be present for much longer. One way or another, the woman I’ve known my whole life is leaving.
A few days ago we took the girls to the beach with my folks. While my dad and Kris took the girls beach combing, my mom and I sat back on a blanket and looked out over Puget Sound.
“So how are you?” I asked.
“I’m okay,” she replied, slipping her baseball cap lower to block out the sun.
“You seem, I don’t know, at peace with everything,” I said.
“I think I actually am. You know what a control freak I can be–”
I started laughing and she joined in. “I do know, Mom, because I got it from you.”
“I don’t know about that–I still have it,” she said, her usual reply whenever I claim to have inherited something from her. “But I think I’ve finally accepted that I have no control over what’s happening to my brain. I realized at some point that I could either accept it, or I could keep fighting and be miserable. I’m choosing to try to enjoy my life as long as I can.”
“That sounds wise,” I said, meaning it.
Mom at the beach
Last winter, when I explained to my former boss that I was giving up my stable, good job to spend more time with my parents and young children, he told me that the last lesson our parents teach us is how to die. What my mother is teaching my sister and me, our spouses and our children, is how to go out on her own terms as herself, before Alzheimer’s can rob her of her dignity, her capacity to feel joy, her connection to the people she loves most.
One of the tangible legacies she will leave is a video that the attorney recommended we record in which my mother explains her decision-making process. It didn’t have to be fancy or especially long, the attorney told us, just honest and direct–ways of being in the world that come naturally to my mom. Once the paperwork was complete, my parents and I sat down in their living room and I “interviewed” her with my camera phone, asking her a variety of questions about how she defines quality of life and why she is choosing to hasten her own death.
Towards the end of the video my mother says, “I feel very strongly about the decision [to do VSED]. It’s my life. It’s my future, or not, and I have the means within my reach to make this decision and follow through with it. I don’t want to hurt my family, but I think it would be more hurtful to see me with my brain not working, wandering up and down the halls of a nursing home alone and not even knowing who you are. I have been there, and I know how painful that is for family members. I don’t want to do that to you or to me.”
“Do you have any doubts about your decision to do VSED?” I ask.
“I have no doubts whatsoever,” she says firmly. “I feel very strongly about it. I feel strongly about it enough that I would be willing to fight anyone who tries to convince me that this is not the right plan. It isn’t right for everybody. Maybe it isn’t right for most people. But it is very much the right thing for me to do. And I intend to do it—when the time comes.”
We both pause, and then: “Thank you,” I say from behind the camera. “I love you.”
“Thank you,” she replies, smiling at me. “I love you too.”