Despite having Alzheimer’s disease for five years, Mario Martinez didn’t look any different than his nephew Jorge Martinez, 55. “He did a very good job of hiding it at first,” Jorge said. “But eventually he became distant.”
Mario died three years ago, at age 88, of complications of the disease. In its early stages, Jorge said, his uncle would forget to eat breakfast or shower, would leave stacks of unopened mail in his home and sometimes called him at 2 a.m. thinking it was 2 p.m. Mario had no family other than Jorge, who became his only caregiver until he sent him to Bristal Assisted Living, where Mario was under 24-hour care until he died.
In February, Jorge took a job at the Nassau County Office for the Aging, through which he got involved in the Long Island chapter of the Alzheimer’s Association. He shared his story at the East Meadow Public Library during the first of three community forums offered by the organization this month, which is National Family Caregiver’s Month.
The forum acted as a support session for residents with the disease and their caregivers, helping them address the challenges they’ve faced. “You had people in the room who had gone through the [caregiving] process, people who are going through it and people who just found out about their diagnosis,” Martinez said. “It was extremely emotional to be in that room and share those experiences . . . but I’m grateful we had the Alzheimer’s Association listening.”
Martinez said that caring for his uncle, who was not married, was “mentally, physically and emotionally exhausting.” He struggled with protecting Mario’s assets, caring for him while also earning a living, and with the trauma of seeing a loved one experience such an illness. “You have a certain memory of them,” Jorge said, “and you have no concept that this is the same person you’re losing.”
Many in the audience shared stories of relatives with the disease who they are afraid to leave alone. Martinez explained that the county offers four adult day-care programs through its office for the aging, including an Alzheimer’s Senior Day program at The Club in Hewlett and the Herricks Alzheimer’s Adult Day Program at the Herricks Community Center in New Hyde Park.
“Caregivers need rest,” he said. “Your [loved ones] will be in a place that’s safe, that’s clean and where they will do programs to minimize the damage caused by the disease.”
More than 5 million people in the U.S. have Alzheimer’s disease, and some 16 million more are caring for them, according to the Alzheimer’s Association. It is the sixth-leading cause of death nationwide, and it cannot be cured, prevented or slowed.
“Opening up this type of discussion gives us important insight into the changing needs of the community,” said Kate Anastasia, program director of the association’s Long Island chapter. “This is everyone’s disease.”
Martinez said that the forum was a good place to start for many people affected by the disease. “This is a marathon, not a sprint,” he said. “The more we discuss it and the more people are educated about it, the less afraid we are to deal with it.”
The association will host another forum at the Riverhead Senior Center on Nov. 27 at 6:30 p.m., and a third at the Hauppauge Library on Nov. 29 at 6:30 p.m.