“525,600 minutes – how do you measure a year in the life? How about love?”
Jonathan Larson, American Composer and Author, Rent
Something’s not right, I thought. Then I pushed the thought aside.
Donn and I have been together for more than twenty-eight years, married 27 of those. Embracing change and adapting seemed to be a hallmark of our marriage and professional lives. We have transitioned a lot, living in five states, having nine houses, building a home together, and surviving. We managed dual careers while raising two kids. We had our share of health scares and fights, as well as happy, proud, challenging, and sad moments. When something changed, either professionally or personally, it wasn’t always easy. But we generally thought, “We’ve got this.”
We started working on our book project in January 2019. It had been a long-talked-about dream and shared professional goal. This book was a passion project for us both, helping others succeed in navigating transitions big and small and adapting to changes they may face in work and life.
We had been working on the book, in fits and starts. Most days, I was busy with my university job from early morning until late at night. I would write, research, and ponder the book’s concepts in the early morning hours from 4 am – 7 am and on the weekends when I was not busy with a university function.
Donn was seemingly working on the project as well.
I love writing. I always have, though I have never been formally educated or trained as a writer. While getting my undergraduate degree in engineering, the only English class I remember was a science fiction seminar held in a bar.
Attempting to write a book was a significant professional change for me and one for which I needed to adapt. I would be moving from writing research articles, 1,000-word popular press articles, and professional memos to writing a book.
I knew it wasn’t going to be easy. I knew it would be frustrating and fun at the same time.
I knew I would have failed attempts and many re-writes. I knew I would have to change the way I think and write. And, that was all ok. I was ready for the uneven and messy creative process.
Throughout my career, I trained myself to write in the style required for my job at the time. As a new Ph.D. student and early tenure-track management professor, I poured hours into mapping how other authors wrote articles in the top research journals in which I needed to publish in my field. When I started writing for popular press outlets, I studied the style of articles in each publication. I always learned by studying others’ writings and trying to adapt my style.
When we started this book project, I studied several books that I thought had a general format and style like how I wanted to position our book’s style. I mapped out the structure of chapters. I focused on the tones, the narratives and everything in-between. I was learning where to turn for help and uncover the secrets to book writing and publishing. Popular press book writing was an obvious shift for me, but one I could easily map out. I knew what skills I had and didn’t have. I understood what I needed to do to develop my skills to write the book I envisioned.
I shared with Donn my newly acquired tips and tricks for learning to write.
Donn is 21 years older than me. He is a genius-level, retired management professor – smart, funny, quick, intellectually curious. He has two published books, one now in its ninth edition, with the editions spanning more than four decades. Working on another book project was natural for him.
When I left for work in the morning, I would often leave articles or topics on his desk to review and research. On the weekends, we would debate concepts and set out a game plan of pieces he would handle and portions I would take.
But we weren’t making much progress.
I wanted to discuss my completed sections of the book, and Donn was still struggling to pull his together. A few times, I asked him whether he was still interested in the project. More than once, I accused him of not caring about the book project or not listening when we discussed it.
We stumbled along on the project for six months. As we continued to work together, I noticed that Donn seemed to have trouble understanding some of the book’s basic tenets. He was most definitely having difficulty adapting to a new writing style. I found that we were reviewing concepts again and again. I would try different ways of explaining things. He wrote some sections, and I provided feedback. I was getting irritated and frustrated that he was not focusing, understanding and internalizing the project.
Something’s not right; I kept thinking over and over.
Instead of pushing the thought aside, I started heading down the path of applying negative judgments about Donn. He’s lazy. He doesn’t care. He doesn’t listen, and he is definitely not trying, I thought. He is not carrying his load as a co-author on this project; He’s retired, and I work full-time, sometimes seven days a week. What’s his problem?
I felt resentful for carrying so much of the workload of researching and conceptualizing the project, learning how to craft a book proposal, updating his website, my website and setting up a splash page for the book. I was cranky, short, and curt with him while discussing the project. Do your damn parts, I thought.
I was happy for July to come because we were going on vacation, just the two of us. We have been going to the beach every year. “This is perfect,” I told Donn. “We can decompress without manic schedules. We will have uninterrupted time to work on the book, talk about concepts, and make a plan for the proposal. We also get the added benefit of going on walks on the beach or trails, reconnecting, and relaxing with waves as our view.”
I was perched on the window seat, periodically looking up to gaze at the beautiful blue waves while emailing website updates to our designer. Donn was at the dining room table, working on a chapter, when he called me over.
“Celeste, can you help me with something?”
As I reached his shoulder, he said, “I can’t remember how to use the track change function to show my edits.”
After showing him how to track changes in the Word document, I wandered back to my seat. In my head, I was screaming, What’s going on? He’s been using the track change function for years and years.
I sat there watching the waves roll in and out and reflected on other things I had noticed while we had this relaxed time away together. Donn would often ask me the same question four to five times a day. We would talk about a book topic, and then I would bring it back up later to revisit it, and he couldn’t remember the details. He would go to the store multiple times a day because he forgot something.
Donn had long been known to have a bad memory when it came to names and such. But, his current memory lapses seemed to be far worse.
I started wondering, Am I crazy? Is his memory really so bad? Am I searching for problems that are not there? Or without the busyness of my daily work life – am I just now noticing?
I started keeping a log of the differences I perceived in his behavior and memory with a feeling of dread. As days and weeks passed, I realized that the daily list I accumulated went well beyond his past memory glitches and certainly seemed greater than routine problems with memory due to aging.
Something’s not right. I kept thinking over and over.
I gingerly tried to approach Donn with my concerns. That conversation did not go well. He was defensive and denied there was any problem with his memory beyond normal aging. A few days later, he asked his internist to give him a basic memory test, which was not an adequate assessment or evaluation given his high IQ and education. He used that as a proof point. “See, I don’t have any problems,” he declared with a scowl.
Throughout the summer, I continued to limp along on the book project, carrying 99.9% of the workload. Despite having a couple of agents express interest in the concept and provide initial guidance on developing a proposal, I could not get Donn to focus on the project or complete any sections.
Somewhere deep down, I knew that I had lost part of my partner – my professional collaborator, my co-author, my confidant, my joint problem-solver – but I did not want to face that reality.
I saw our dream of a joint book project dissolving, and I did not have my partner to turn to and talk through how to interpret what was going on, much less how to manage it.
I realized things were also changing in our household routines. Donn was still asking me multiple times a day if I would be home for lunch – when we woke up, before I left for the office, by text, usually during dinner, and then again before we went to sleep.
By fall 2019, I fell into a funk, a sinkhole of despair. The situation with Donn was a change personally and professionally that I did not see coming. It was a slow, insidious shift that seemed to build up over time and then, BAM! It hit me squarely in between the eyes.
For the first time, I did not think, “I’ve got this.” I felt buried beneath the weight of this change.
Despite receiving positive feedback on the book’s concept and topic, I put the project aside. I couldn’t bring myself to work on our project. So, instead, I prioritized how to manage the personal aspects of this change with Donn. With this came a lot of self-reflection on my and our priorities over 27 years, thoughts about what I wanted for the future, reflection on things I enjoyed about our current interactions and things I despised.
Quite frankly, I also had a pity party for myself, by myself, which made it worse because I felt utterly alone.
I changed my behavior. I stopped keeping the daily list of things I noticed. Instead, I focused on how to modify my behavior to be more supportive. I stopped pointing out errors or things Donn forgot, as that only made him defensive. I eliminated the word ‘remember’ from my vocabulary. We started planning meals, compiling grocery lists and cooking together, tasks that Donn had previously handled for our family by himself. We focused on talking about current news events and binge-watched TV shows.
We held hands while watching TV, in the middle of the night, during random times in the day, and when we woke up. I often found myself wishing that we had been holding hands all along – every day – for all the years we have been married.
I read books and research articles on aging and memory. Donn started reading some of the same material. Unfortunately, we still had dramatically different perceptions of the situation, and it was hard to talk about that.
One night, we were having a family dinner with our kids. As our family dynamics go, the conversation is typically like that shiny silver ball in a pinball machine, with the conversation flying loudly in many directions every time someone hits the paddles. I never know the path our discussions will take, ranging from politics, current events, to family stories.
Somehow, we landed on the topic of chicken pot pies.
“Oh gosh,” I said excitedly, “we need to see if we can find the chicken pot pie recipe that Ashley used to make.”
Donn turned, staring at me blankly, “Who’s Ashley?”
“You know Ashley, our nanny and house manager from Kentucky, she worked with us for three years.” Donn just continued to stare. Our daughter Nikki chimed in, “Dad – Ashley, she helped us with grocery shopping, meals and laundry.” He just continued to stare. Our son Jason mentioned how she took them to track and play practice, had a culinary degree, had a son and gave birth to a baby girl while working with us.
Ashley took care of our kids and our house every day for three years. Donn texted with her or talked with her at least five times a day for three years. Donn almost singularly managed our family’s relationship with Ashley for three years. He did not remember Ashley.
“Something’s not right, Donn” I whispered to him the next day. “I’m scared. Can I please reach out to some contacts that I have to see what kind of help we need?” With a silent nod, he gave me the affirmation I needed to seek guidance from a neurologist for extensive testing.
While we were going through the six-week testing process, the doctors helped provide additional lifestyle and health changes we could make and techniques to employ. To Donn’s credit, he started engaging in memory-helping techniques: writing things down, using his phone for reminders, having me send him texts, asking for clarity, repeating statements out loud.
At each visit, the doctors would slip in questions: Do you have tracking set up on his phone? Have you set up a pillbox reminder for his medications? Is he still driving? Do you have your wills, power of attorney and health-care directives in place?
Something’s really wrong, I worried.
To move the book project forward again, I took a non-fiction book writing class. I needed a reason to refocus on the book, a writing community and instruction, which might give me a nudge and inspiration. I was grieving and wanted something to help me refocus as the sole author of this book. Just thinking about taking “we” out of the book text created a lump in my throat, tears in my eyes, and was like closing the door on my professional partnership with Donn. He and I ultimately reshaped our roles on the book. I took the full lead as sole author on writing and conceptualizing with Donn as my leading supporter.
In early November 2020, a little more than a year and a half after I began noticing the problems, Donn was diagnosed with vascular cerebral small vessel disease, memory loss, and early-stage Alzheimer’s disease.
With that, Donn’s diagnosis confirmed the quiet voice in my head.
Now, instead of one quiet voice in my head, I have a cacophony of many.
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Dear Readers – I hope you enjoyed this piece. I would appreciate it if you would leave comments in the discussion on your reactions to my essay. Please also share your own experiences with caregiving!
I am sending much love to those who are on a caregiver’s journey.
In solidarity and support,
C-
xoxoxox
The Playlist: Walking my way through love, loss and renewal 