- Zahydie Burgos's husband was diagnosed with early-onset Alzheimer's disease at the age of 46.
- Her parents moved into their home to help care for their son-in-law.
- It's allowed Burgos to stay in her job, but still enjoy what may be a limited time left with him.
This story is based on a conversation with Zahydie Burgos, 41, a licensed psychologist from Orlando. It has been edited for length and clarity.
My husband, Francisco — known as Pako — has always been professional, kind, and considerate to everyone.
However, in the fall of 2020, I began to notice changes in his behavior, including skipping meals, struggling to find the right words in conversation, and difficulties managing his finances.
I called him the human calculator because he had been in charge of our income and outgoings from before we got married in 2010, but all of a sudden, he would buy strange things.
Amazon trucks drove up to our house 3 or 4 times a day
We're not into hockey, but he'd go on the internet and buy tons of hockey merchandise that we'd never wear. "It's on sale," he told me. Amazon trucks drove up to our house three or four times a day.
He also ordered expensive artwork online. It was costing a fortune, and we were running out of walls to hang it on.
Pako worked as a lawyer for the federal government, but despite being one of the strongest candidates on paper for promotion, he'd fall short during the interview.
Initially, I attributed it to the stress of the COVID-19 pandemic. We thought it was depression, and I got him the best psychiatrist and a therapist. Even though the psychiatrist changed his medication around 15 times, nothing worked, and he was getting worse.
The communication in our marriage changed
If he were making an appointment over the phone, the other person would likely become impatient because he had difficulty explaining what he wanted.
Once, he was due to meet me at a doctor's office, where we often went. It should have been a 10-minute drive, but he got terribly lost. He stopped the car to describe his surroundings, and I was able to guide him there.
I'd been his princess for 17 years, but he changed the way he communicated with me. He'd snap at me. We had never fought before. "This shouldn't happen in a marriage," I thought.
Then, during the last week of December 2021, he went to an eye appointment. The doctor called and said, "You need to come in." He'd detected an abnormality and thought Pako might have a brain tumor.
We took him for an MRI and, to our relief, it wasn't a tumor. However, there was bad news. The scan showed that his brain was atrophied and looked like that of an 80-year-old man.
I was in denial when we were first told
They said we needed to see a neurologist as soon as possible. She studied the scans and the reports from Pako's psychiatrist and therapist. Then she asked if his judgment had changed. I explained the issues from the past year or so.
She diagnosed him with Alzheimer's disease on January 28, 2022. I was a hot mess; in denial. l said, "How can that be? He's only 46." She explained that it was an early onset.
Pako's face was frozen, then he said, "I knew it." His father died from Alzheimer's in 2012 at the age of 70. He'd watched his decline.
The diagnosis was confirmed at Johns Hopkins University in Baltimore after Pako underwent tests, including a lumbar puncture. His condition was genetic.
We informed only his eldest brother, a cardiologist, and my parents. We needed a year of mostly silence to grieve in our own way. I must have cried every day.
Still, we were encouraged by breakthroughs in the treatment of Alzheimer's in its early stages. Pako, now 50, has been on a medication named Lequembi since the spring of 2023. He has also participated in a clinical trial of a drug called Etalanetug for the last two years.
I care for my husband as much as possible, but I work full-time
There wasn't even a conversation before Mom and Dad, who retired in their 60s, moved into our house in Orlando. They relocated from their home in Puerto Rico soon after the diagnosis.
My 74-year-old father, Roberto, walks 30,000 steps a day. He says that he wants to stay fit to support Pako and me. It's mostly due to my parents that I can work full-time, while also caring for my husband whenever possible.
He can feed and bathe himself, even though he is progressing. He requires supervision, especially when he is outside the house, where there are no cameras to monitor him.
My parents are very respectful of boundaries and refrain from intervening in his affairs. But they make sure he is eating or taking his medication when I'm not there.
We felt it was time to share the news with the rest of our family in February 2023. They became our village. Pako's siblings visit often to spend time with him and take care of appointments I'm unable to attend. His 85-year-old mom calls every day from Puerto Rico.
I advocate for awareness of Alzheimer's disease
Members of the family have even joined us on our "bucket list" tours to ensure we make the most of every moment together. We've visited places such as Athens, Greece, and Venice, Italy.
Pako's diagnosis has upended our lives, but it has also been empowering. I advocate for carers like us, people with Alzheimer's, and raise awareness about early detection via Us Against Alzheimer's.
Most of all, I'm grateful for the support of our relatives who have made sacrifices for Pako and me. Their love and dedication mean a great deal.
