On Alzheimer’s, Purpose, and Bucket Lists

September 27, 2024

Dr. Zahydie Burgos Ribot (@inolvidable.mente) is a Licensed Psychologist and caregiver to her husband who was diagnosed with early-onset Alzheimer’s at the age of 46. They are currently completing their bucket list of world travel together.

As we are sailing into Glacier Bay, and I am standing on the deck of the boat in front of Margerie Glacier, I am in absolute awe. I have planned our Alaska trip for months, and I have anticipated this feeling for even longer. The temperature feels cold against my skin, and I have goosebumps all over, but suddenly I realize that the cold and the goosebumps feel all too familiar: my mind goes back to the neurologist’s office, and I hear those words all over again: “I am so sorry, the results confirm your husband has early-onset  Alzheimer’s.” Pako had just turned 46. How could this be happening? I remember everything about that day: the clothes we were wearing, what we ate for lunch, the information flashing on the waiting room’s display screen. More vividly, I remember how cold I felt when the doctor gave us the news, and the emotional devastation that followed.

I probably cried every single day of 2022. I was confused, sad, angry, grieving and depleted. I could not understand that someone in his mid 40s could be diagnosed with Alzheimer’s. For a year, only about 10 of those closest to us knew about my husband’s diagnosis, mainly because we were not ready to answer the questions that we knew would follow when they learned the news. I felt lonely and lost. I could not believe this was happening to us. But I also knew I needed to shift my perspective, because at least we knew what we were dealing with, and I knew he needed me. Also, somewhat selfishly, I needed him too. 

After a period of intense grieving, I made use of all the tools that I have learned to use throughout my professional career as a Licensed Psychologist. I decided to educate myself on the disease and its implications, and learned to manage my expectations. I began reading every book, research paper and article on the topic that I could find. I learned as much as I could about his own family history of Alzheimer’s. I connected with more experienced caregivers, listened to podcasts, and pursued treatment and a clinical trial opportunity for him. These things were crucial in calming my anxieties and empowering myself: I was focused and determined to fight this disease head on.

From diagnosis to this day, my husband and I have greatly benefited from prioritizing our own mental health with the help of psychiatrists, psychologists, support groups, regular exercise, social connections, attending therapeutic classes — some of which were offered through the Alzheimer’s Association — and, in my case, yoga and meditation. To support his cognitive reserve, my husband enrolled in French classes, and we hired a piano teacher who focuses on music as a form of neuro-rehabilitation therapy. We always remind each other that there is no shame in our mental health game, and we are always open to discuss the importance of being mentally prepared to face Alzheimer’s. 

A few months after the diagnosis, we came to the realization that while Alzheimer’s had changed our future together, it was not going to take away our present. We changed our perspective and realized that we did not have to live in a daily state of emotional devastation. We still had time together, and we wanted to spend it loving and living to the fullest. We sat down and planned for all the places we wanted to see, and all the things we wanted to do. We now had a bucket list. The urgency was palpable, and the intentions were set. Our emotions were positive and we felt a renewed energy and sense of hope. When you live with Alzheimer’s, you have no time to lose: the time is now.

In the fall of 2022, I canceled all my patients for one month, and at the urging of our neurologist, family and friends, we started to tackle that bucket list. Our first trip took us all over Europe, where we paused, lived in the moment, and did not worry about anything other than eating gelato or a plate of pasta. Although my husband is still capable of taking such trips, traveling looks substantially different nowadays. We always ask for medical pre-boarding, use TSA Cares passenger support when needed, leave ample time to go through airport security, avoid layovers, and will not take an early morning trip, since they do not settle well with his stamina and new wake-sleep cycles. I strategically select plane and train seats, and make sure to pack his favorite snacks and drinks. I have downloaded tracking apps on both of our phones, just in case we get separated. I travel with enough of a supply of his medication, a list of his conditions, and documents on what to do in case of an emergency. We prioritize the quality of the trip versus rushing, because we want to do and see more. His pace is different, so the expectations and the way we travel has evolved, but we plan to continue traveling for as long as he is able.

As I am writing this piece, we find ourselves admiring the glaciers of Alaska, watching eagles as they soar, whales as they breach, and salmon as they swim against the stream. Such an idyllic couple of weeks, that have reminded me that despite an Alzheimer’s diagnosis in your 40s, there is still time to feel joy, and happiness, and love and laugh, and go on adventures, and be in awe of nature; that we are still capable of living with purpose and intention; that we still have each other. And while my mind might wander to the depths of the reality we are living, while we are completing the most amazing bucket list trip ever, the love that we have forged over the past 21 years is way stronger than any diagnosis could be.