Parents Talk Back

Martin Prado’s after-school activities revolve around his grandma’s schedule.

The high school senior often stops by a neighborhood restaurant to pick up rice and beans for her dinner. He’ll blend it before he spoon-feeds her, so she doesn’t choke. He had been promoted to salad maker at the Texas Roadhouse where he used to work 20 hours a week, but recently quit to spend more time taking care of his grandma.

Martin’s grandmother, Sonia Cardona, 61, was diagnosed with early-onset Alzheimer’s nearly six years ago. Cardona, who worked as a teacher’s aide for 29 years, completely lost her speech about a year ago, and is now unable to feed, clothe or use the restroom herself. Martin’s aunt Daisy Duarte, Cardona’s daughter, had been taking care of her mom alone, full-time, since the illness began robbing Cardona of her memories and cognitive function.

Martin, 17, spent part of his summer vacation helping his aunt care for his grandma. They live a few miles from his parents’ house in Springfield, Missouri. Duarte, 41, was able to work more hours with her nephew’s help at home. When he started his senior year at Kickapoo High School, he kept thinking about their situation.

He knew his aunt couldn’t keep taking care of Cardona alone.

“I’m doing nothing but going home and playing video games after school,” he said. “I could be doing something better with my time.”

He told his parents he wanted to move in with his aunt and grandma to help them out. They agreed. He texted Duarte the news.

She was grateful for the help, and Martin moved in last fall.

“There are days I just can’t do it,” she said, about balancing work and being a full-time caregiver. “He’s 17. And he stepped up to the plate.”

As soon as he gets home, he helps his grandmother to the restroom. Then, he helps her to the couch and watches “Dr. Phil” with her. A little later, he will prepare her dinner and spoon-feed her. They’ll watch a few more television shows before he gets her ready for bed. He will take her to the restroom again and then help her into bed. He’s learned to watch for signs of seizures and knows which medicines to give.

Duarte’s life completely changed with her mother’s diagnosis. She used to own a sports bar, which she gave up to take care of her mom. She watched her mother’s rapid decline with an added sense of dread: Duarte was genetically tested and discovered she has the same mutation, ensuring she will also develop the disease. She’s become an outspoken advocate for Alzheimer’s research and funding and has done around a hundred interviews.

“I don’t want pity,” she says. “I want a cure.”

About 5.4 million Americans have Alzheimer’s, and that number is expected to nearly triple by 2050. It’s the sixth-leading cause of death in the U.S. and the leading cause of dementia in the elderly. Yet the last new medication approved for the disease was about 15 years ago.

Toward her desire for better treatments, Duarte joined a clinical trial two and a half years ago at the Washington University School of Medicine. She uses her vacation days to drive to St. Louis for periodic brain imaging scans, cognitive tests and an annual spinal tap. The study is part of the Dominantly Inherited Alzheimer Network, an international research partnership of leading scientists to understand a rare form of Alzheimer’s disease caused by a gene mutation. Researchers hope that understanding this form of the disease may provide clues to decoding other dementias and developing dementia treatments.

While Duarte knows she is genetically wired to face the same fate as her mother, doctors cannot say exactly when the disease will strike her. She hopes that advances in medicines may give her extra time.

“I’m going down fighting,” she said.

Martin is thinking about his future, too.

He has a 3.5 grade point average and plans to attend community college for a couple of years. Eventually, he wants to earn a degree in hospitality management. His dream is to open a Puerto Rican restaurant. He’s picked out a name already -- “Abuelita’s.”

It means “grandmother” in Spanish.

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