A Husband’s Early Onset Alzheimer’s: One Family’s Journey Through Loss and Hope
A licensed psychologist in Orlando shares her deeply personal story of navigating her husband’s rapid decline from early-onset Alzheimer’s, and the unexpected strength found in family and medical advancements.
Zahydie Burgos, 41, recounts the heartbreaking experience of watching her husband, Francisco – known as Pako – succumb to Alzheimer’s disease at the remarkably young age of 46. What began as subtle behavioral changes in the fall of 2020 quickly escalated, forcing the family to confront a devastating reality and ultimately redefine their lives.
Pako, described as a consistently professional, friendly, and considerate man, began exhibiting signs of cognitive decline. “He was skipping meals, having trouble finding the right words in conversations, and having difficulty managing his finances,” Burgos explained. A man once lauded as a “human calculator” for his financial acumen, Pako started making increasingly erratic purchases. “Amazon trucks pulled up to our house three or four times a day,” Burgos recalled, describing a deluge of unwanted hockey equipment and expensive artwork.
Initially, the changes were attributed to the stress of the COVID-19 pandemic. Burgos sought the best psychiatric and therapeutic care for Pako, but despite numerous medication adjustments, his condition continued to deteriorate. Communication became strained, and a previously loving relationship was marred by frustration. “He snapped at me. We had never argued before,” Burgos shared, grappling with the unfamiliar dynamic.
The turning point came in December 2021, when an eye doctor discovered an abnormality that prompted an MRI scan. While the scan ruled out a brain tumor, it revealed a far more alarming truth: Pako’s brain appeared to have atrophied to that of an 80-year-old man. On January 28, 2022, he received a diagnosis of early-onset Alzheimer’s disease. Pako, having witnessed his own father’s decline from the same disease, simply stated, “I knew it.”
Further testing at Johns Hopkins University in Baltimore confirmed the diagnosis and revealed a genetic component to Pako’s condition. The Burgos family initially kept the news confined to close relatives – Pako’s brother, a cardiologist, and Zahydie’s parents – spending a year privately processing their grief.
However, a glimmer of hope emerged with advancements in Alzheimer’s treatment. Pako, now 50, began receiving Lequembi in the spring of 2023 and has been participating in a clinical trial for the drug Etalanetug for the past two years.
Recognizing the immense demands of caring for Pako while maintaining her full-time career, Burgos received unwavering support from her parents, Roberto and Sara. Without hesitation, they retired and relocated from Puerto Rico to Orlando to assist. “My 74-year-old father walks 30,000 steps every day. He says he wants to stay fit to support Pako and me,” Burgos noted, highlighting her father’s dedication.
While Pako retains the ability to care for himself, he requires supervision, particularly outside the home. Burgos’ parents provide crucial support, ensuring he takes his medication and eats regularly. In February 2023, the family expanded their circle of support, informing Pako’s siblings and his 85-year-old mother, who calls daily from Puerto Rico.
The family has embraced a “bucket list” approach, traveling to destinations like Athens and Venice to create lasting memories. Family members accompany them on these trips, ensuring Pako is safe and supported.
Burgos is now a passionate advocate for Alzheimer’s awareness and family caregivers, working with organizations like Us Against Alzheimer’s to promote early detection. “Pako’s diagnosis turned our lives upside down, but it also strengthened us,” she said. Above all, she expressed profound gratitude for the sacrifices and unwavering love of her family, emphasizing that their devotion means the world to her.
