Every day, William Rodríguez shows his wife, María, a portrait on their bedroom wall of a newly married couple. He asks her if she recognizes the woman. María says yes, it’s her.
What about the man, Rodríguez asks. María, 79, looks puzzled. Rodríguez tells her that he’s the man, and that the photo was taken in New York City on their wedding day.
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“I tell her that I love her, and I tell her we’ve been married 52 years,” says Rodríguez, who is 75 and lives with his wife in Manhattan.
The fact that she at least recognizes herself deeply moves Rodríguez. “For me, it reinforces the fact that she’s still there, she still has memories,” he says.
Rodríguez and María’s other loved ones started noticing changes in her behaviors about a decade ago, soon after she retired from a career as a kindergarten teacher. As is typical with Alzheimer’s disease, the symptoms appeared gradually. Rodríguez would call her from work at midday, for instance, and she’d say she hadn’t eaten. She only had an appetite for coffee, she’d tell him.
She stopped cooking, which she had always enjoyed. And she became forgetful. Then came the suspicions.
She was convinced her sister was stealing from her, only for Rodríguez to find many of the items stashed away around their apartment. María had hidden them — keys, silverware, plates, brand-new eyeglasses — and forgot that she had done so.
“At first I didn’t catch on,” Rodríguez says, adding that the initial symptoms didn’t seem to point to anything serious. “Now everything clicks.”
About five years ago, at the behest of a niece, Rodríguez took his wife to a neurologist for testing. They conducted imaging of the brain and asked María a series of questions. At one point, the neurologist tested her ability to tell time. The clock-drawing test — which usually involves drawing a clock on a piece of paper with numbers, clock hands and a specific time — has long been administered by doctors to check for dementia or other types of cognitive decline.
“Here they are, asking a teacher of 40-some-odd years how to tell time,” Rodríguez says, “and she couldn’t do it. It was disheartening.”
The diagnosis and disease upended the Puerto Rican couple’s lives, including post-retirement travel plans. The two had ventured around the world during their marriage and had long talked about going on a river cruise in Europe after he stopped working at age 70 in the banking industry.
“It was not to be,” he says.
María Rodríguez is among the estimated 14 percent of Hispanics ages 65 and older who have Alzheimer’s or dementia, according to the Alzheimer’s Association. Many are diagnosed only when the disease is in a more advanced stage, for reasons that range from lack of health care access and misdiagnoses to cultural stigmas and the dismissal of symptoms (like memory loss) as a normal part of aging, says the association.
Getting diagnosed later is especially troubling because early detection of Alzheimer’s could potentially give Latinos access to more treatment options, including the opportunity to participate in clinical trials, a chance to make lifestyle changes to help preserve their cognitive function, and the time to plan for their financial and caregiving future with their families.
Caregiving challenges force families to juggle priorities
Perla Castro, the eldest of four siblings, has had primary responsibility for her 71-year-old mother, Lesbia, for more than a decade, ever since she was diagnosed with early-onset Alzheimer’s at age 55.
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Castro, 47, is one of more than 11 million Americans — two-thirds of whom are women and 8 percent of whom are Hispanic — who provide unpaid “informal” care for people with Alzheimer’s or other dementias, according to the Alzheimer’s Association. As a whole, these caregivers provide more than 16 billion hours of care valued at nearly $272 billion.
Caregivers often rearrange their lives to look after their ill loved one, even if the patient has private nurses, home health aides or is in a long-term care facility. And while several relatives may chip in to help the patient, usually the caregiving disproportionately falls on the shoulders of one person.
It is a scenario Castro knows well. She says tensions arose among the four siblings as their mother’s symptoms worsened. Two of the siblings “live farther away, they have kids, the kids have sports, school. There are competing priorities.” Her sister, who works full time as a nurse, helps take care of Lesbia and their father, César, who is 70, when time allows. A brother, who lives farther away, comes to the house once a week to help.
“We have our rotation,” says Castro, who was born in Guatemala and now lives in Chicago. “But I’m the one taking the primary caregiver role.”
After coming to the United States from Guatemala in 1986, Castro’s parents poured all their energy and attention into supporting their family and never saved for retirement or long-term care. That created a significant hardship when Lesbia reached the point of needing a level of constant care that the family, which had been covering out-of-pocket costs, could not afford.
So Castro decided to quit her full-time project management job and strike out on her own as a consultant. That way she could tend to her mother’s growing needs.
“I needed the flexibility,” Castro says of leaving the corporate world.