Linda shared her story in January of 2023.
For three decades, I worked for an organization whose mission is to support adults with disabilities. It was a very rewarding job. But a few years back, I started noticing that my coworkers were bringing me the cups of coffee I had forgotten and left on their desks. I was having trouble getting the dates for meetings right. Outside of work, too, I was struggling. I couldn’t remember the routine we always used in my yoga class, no matter how many times I had done it. I would get lost in the woods around my house, even though I had walked through them countless times.
I went to see a neurologist shortly after my symptoms began. He did testing, but all the results came back ambivalent. For a number of years, he told me that what I was dealing with was anxiety and depression. But I said, “I know anxiety, and I know depression, and that’s not what this is.” I just knew that my faculties were diminishing in some way.
In March 2021, I retired from my work and started looking into clinical trials related to Alzheimer’s. To get into one, I underwent weeks of screening including blood tests, cognitive tests and brain imaging to determine if I had early-stage Alzheimer’s. According to the tests, I qualified for the trial.
My diagnosis was in its own way a relief; for so long, it had been clear to me that something was amiss, even though other people in my life, from my husband to my colleagues to my neurologist, couldn’t see it.
Now, two years later, I’m still able to do things physically for myself — I’m driving, and I’m trying not to lose my ability to go into the woods on my own. We live on a street that connects to 40 miles of hiking trails, so walking in the woods is a really important piece of my life. But I get confused when I don’t recognize places I’ve traveled for years. I struggle to read the newspaper without omitting clauses and to follow conversations with multiple people. When I read a book, I need big print, less complex sentences, characters who aren’t changing all over the place; I often read a page, turn the page, go back, and go up and down the page again. I don’t have the same enjoyment of being with people at parties like I used to. And my math is gone, which startled me. I did the family finances for 45 years, but now my organization is shot and my ability to manage without getting distressed is decreasing.
With Alzheimer’s, it feels like my mind is a colander. Things are just dripping away.
I’m not scared of dying. With this disease, I’m more afraid of being unable to die when I’m ready. I started doing a lot of research and read Phyllis Schacter’s book Choosing to Die about her husband’s decision to voluntarily stop eating and drinking (VSED). I know I want to be able to leave my body when I’m no longer myself in a way that’s legal and doesn’t put anybody else in jeopardy, and it seems that VSED is the only option I have.
My feelings on this are deeply informed by my experience with my father’s death. Dad had Parkinson’s, and he told my sibling and me that he did not want to go on living if he were debilitated and had to move to a nursing home. One day when I was visiting with him at his healthcare facility, he asked me if I would end his life. Of course, I told him I couldn’t. Then, in his last years, Dad deteriorated to the point where he could no longer communicate and was no longer fully present. He was suffering, clearly. Seeing how it turned out for him, I really want to make sure that is not going to happen to me.
Luckily, a former colleague of mine is now a death doula. I’ve attended one of her grief trainings, and she has assisted me and my husband, Paul, with documenting my wishes, which are that I want to voluntarily stop eating and drinking when that time comes.
There are two questions that remain to be answered: when and how. With VSED, the “when” question is up to me. I believe I’d feel ready to VSED if I didn’t recognize my grandchildren, for example. I have a friend who is in a much later stage of Alzheimer’s than I am, and I asked him the other day, “Dick, are you lonely?” “Yes,” he said. So I think when I’m feeling lonely, struggling to recognize my loved ones and participate fully in my life, that would be the time to leave. And I’ll still need to be able to communicate, “This is what I want.” Because my decision will obviously impact all of my family, I’ve already spoken with my children about my interest in VSED. Even though I know it’s hard for them to think about, they are very understanding.
As to the question of “how,” that is a little less under my control. I don’t want to do this unless I’m sure I have the medical support I will need. It’s not clear if I can get it. I’m currently in conversation with a local hospice provider about what sort of support they could give me during the VSED process.
In the meantime, I’m enjoying time with my dog, Luna, walking, meditating and yoga. I still enjoy cooking, although the number of times I have to go back and read the recipe is astounding. I’m also focused on being open and authentic with people about this disease. After I was diagnosed, I was determined not to hide it. Then a friend’s daughter who was taking a filmmaking class actually asked if she could make a five-minute documentary about me for her school project.
I thought it was a wonderful idea, and the film she made, called Walking Home, turned out to be a very fine film. It was also a good starting place to put on video my thoughts, feelings and decisions.
Maybe most importantly, I’m appreciating the intimate relationships in my life in which I can share about my experience in a real way. When I’m connected, I’m happy. I wear a necklace my daughter-in-law gave me, which is the Ram Dass quote, “We’re all just walking each other home.” That’s my life’s mantra.