When Francisco “Pako” Burgos was diagnosed with early-onset Alzheimer’s disease at the age of 46, his family quickly stepped in to provide vital support. His wife, Zahydie Burgos, a licensed psychologist from Orlando, described the profound changes that began to affect their lives in the fall of 2020. Pako’s parents, Roberto and Sara Burgos, relocated from Puerto Rico to assist with his care, allowing Zahydie to maintain her full-time job while spending precious time with her husband.
Pako, who worked as a lawyer for the federal government, began exhibiting unusual behaviors that raised concerns. Zahydie noticed changes such as skipping meals, difficulties with conversation, and erratic financial decisions. “Amazon trucks drove up to our house three or four times a day,” Zahydie recalled, as Pako ordered unnecessary items, including hockey merchandise and expensive artwork.
Initially, the couple attributed these changes to stress from the COVID-19 pandemic. Zahydie sought help from a psychiatrist and therapist, but despite numerous medication adjustments, Pako’s condition continued to deteriorate. “The communication in our marriage changed,” Zahydie shared. The couple, who had previously enjoyed a harmonious relationship, began to experience conflicts.
In December 2021, after an eye appointment revealed potential abnormalities, Pako underwent an MRI. The results were alarming; doctors indicated that his brain had atrophied to the level typically seen in an 80-year-old. The diagnosis of Alzheimer’s disease was confirmed on January 28, 2022. Zahydie struggled with denial, saying, “How can that be? He’s only 46,” but Pako, having witnessed his father’s battle with the disease, accepted the grim reality.
The diagnosis was further validated by tests at Johns Hopkins University, revealing that Pako’s condition was genetic. Following a year of mourning in private, the couple decided to share their situation with family members in February 2023. “We felt it was time to share the news,” Zahydie explained, noting that this openness had fostered a supportive network. Pako’s siblings began visiting more frequently, and his mother calls daily from Puerto Rico.
With the help of her parents, who moved in without hesitation, Zahydie manages the dual responsibilities of caring for Pako and working. Her father, Roberto, maintains an active lifestyle, walking 30,000 steps each day to remain fit for his family. “It’s mostly due to my parents that I can work full-time,” Zahydie stated, emphasizing their crucial role in her life.
Despite Pako’s condition, he remains capable of some independence, including feeding and bathing himself. However, he requires supervision, particularly outside the home, where safety is a concern. Zahydie’s parents respect boundaries, ensuring Pako is safe without overstepping in his care.
As Pako, now 50, continues to navigate this challenging journey, he has been participating in a clinical trial for a drug called Etalanetug and has been taking a medication named Lequembi since the spring of 2023. “We were encouraged by breakthroughs in treatment,” Zahydie mentioned, highlighting the importance of early-stage intervention.
Zahydie has also become an advocate for Alzheimer’s awareness through organizations like Us Against Alzheimer’s. They have embraced opportunities to travel together, creating lasting memories on bucket-list trips to destinations such as Athens and Venice.
The couple’s experience illustrates both the trials and triumphs of living with Alzheimer’s. “Pako’s diagnosis has upended our lives, but it has also been empowering,” Zahydie reflected. With the unwavering support of family and a commitment to raising awareness, they navigate this new reality together, cherishing every moment.
