Episode 2: How Is This Possible?
Season 1: Surviving Alzheimer’s
“I worked for a paper company all these years and never wrote anything down” (Phyllis on The Office finale)
Most of these episodes will be based on my journal entries. I’ve been journaling for the better part of 40 years, and I picked it up a notch as D’s disease was unfolding. I don’t tend to go back and read what I journaled years ago, but when I do, I usually come across some moments that I’m glad I captured because no matter how much I think I’ll always remember something, the details get lost or twisted in delusion or fantasy or just the nature of our imperfect memory system. I knew my life was about to get more complicated than ever and this could serve as valuable reflection, a record not skewed by my brain cells’ wear and tear. And there was the elephant in the room — D’s memory was going to slowly disintegrate, and I needed to preserve how her past is entwined with her present — secure a connection to the person she will always be.
This is the beginning of an ongoing story of love and despair and hope and trauma and adaptation and resiliency and ultimately, acceptance.
Week #1: I’ll never forget (the potential irony of this statement is not lost on me) how devastated I was when the neurologist convincingly said “this is Alzheimer’s” after a 10-minute assessment sitting across from us behind his desk. Although I know D has been struggling for much of the past year, I still don’t know why I was so opposed to considering this possibility; it felt unfathomable. I, like most people, have a pretty superficial perception of this disease based on common stereotypes. That said, D has been working as a cancer center nurse manager and I’m a pediatric nurse practitioner; we’ve seen it all (or at least we thought we did). This type of disease has always been our worst nightmare. And she’s only 56 years old. How is this possible?
Week # 4: I took the day off to go with D to her final evaluation visit at the Institute for Neurodegenerative Diseases. We’re waiting on the results of the Amyloid MRI, the most objective test to support an Alzheimer’s diagnosis. If it’s positive, she will get the experimental tau protein scan and see if she qualifies for an experimental medication trial, and I will continue my process of acceptance and adaptation. I can’t really speak for how her process will look; I only know it will be much different from mine, especially as it unfolds over whatever period of time we are allowed.
Week # 6: D and I flew to Fort Lauderdale for a three-day weekend. I couldn’t predict how this disease would unfold, especially the timeline. We decided we would vacation as much as reasonably possible. She’s always been a consummate work-a-holic, with a genetic work ethic, excelling at all her jobs. But she also excelled at being on vacation — recharging and sometimes rebooting herself and our relationship. This trip felt like it always did. We spent a day on the beach and swam in the ocean together. We had fun drinks and food. We walked the stretch of beach that connects all those hotels. We hung out at one of the fancier pools like we belonged there. We ordered a milkshake at the snack shop. When I tried to pay, the clerk said, “We’ll just charge it to your room — did you check in yet?” D replied no, then gave her last name, and walked away with her milkshake.
This would be the first of her Alzheimer’s inspired thievery, mostly along the line of a Lindt truffle or candy bar (the ones by the cash register that call you while you wait on line, no match for the Alzheimer’s uninhibited). The supermarket self-checkout became more problematic as she would nonchalantly skip over the scanner, right into the bag. This would be the least of our problems.
Week # 7: D has become a gym rat, even going without me, doing an hour or so of solid aerobic sweat. I know this is good for her on many levels. Over her career, she seldom made time to care for herself like this. Her mantra when I tried to nudge her was “don’t push me, man.” This inhibition has dissolved — a disease silver lining. She is allowing herself to enjoy what feels good. We will ride this tide for its moments, hours, or days.
Week # 8: D went to bed tonight worried about being able to count backwards from 100 by 7s so she could pass the cognitive test needed to qualify for the clinical trial. She slipped down the rabbit hole of despair: “It’s not just the sevens, it’s everything, it’s not fair, this was supposed to be the time in our lives to enjoy and now I’m going to miss so much.” So when the good cry came and my own tears trickled down, all I could say was, “You’re right, it’s not fair, it totally sucks, but I promise to be with you, at your side, every step of the way.”
I’m remembering a fight we had thirty-five years ago, spurred on because I couldn’t promise that I’d love her for the rest of our lives. What “promise” meant to me in my youth was so big and concrete and sacred — now, I know that our commitment to each other has been that sacred all along. That night, I felt like we just re-took our wedding vows and I had reconciled my ambiguity over the concept of a promise.
Week # 10: My aunt died after 15 years of Alzheimer’s. D doesn’t know and I’m not telling her. At the wake my cousin greeted me with the summary rationale that “she hasn’t known who I am for the past 6 years, but she asks about my dog.” I had pre-determined not to say anything to my cousins about D. We are still at that stage when disclosing her disease is limited to our inner circle. I don’t feel like it needs to be a secret, but it’s not a casual topic and most people don’t know how to respond, and I’m not always in a space where I want to discuss it. It’s so personal, yet here I am.
I drive from the wake to work with such heavy sadness, wondering how I can keep plugging away with my daily life with any sense of composure. But when I got to work I was able to focus on the lives of others. My job is to help them with their myriad of intertwined illnesses, problems, and concerns. I’m hoping I don’t have to give that up.
Balancing my work and my life with caring for D would become a tremendous source of inner conflict as we proceeded on this journey.
Week # 11: Clearly the hardest thing about your wife having Alzheimer’s is when her sadness takes over, and rationale and logic become a foreign language: “You don’t do anything for me…Always have to have it your way…You talk too fast…You’re not the one who’s going to die young and forget everything.” When I’m running late for work and she’s breaking my heart because I can’t relieve her anguish, I choke back the tears and remind myself that she’ll forget this level of despair just like she forgets how love feels, and I’ll come home and make lemonade.
Thank you for “viewing” this episode. I plan to post 1–2 episodes each week with so much gratitude for my editor Melissa Vogan. You can catch previous episodes on the home page or in the archive.
