‘Your life changes completely.’ Hispanics Endure Hardships Providing Alzheimer’s Care

‘Never in a nursing home’: Latinos face criticism over caregiving choices

Martha Villanigro-Santiago, 62, also saw no choice but to leave her nearly 30-year career as an employment lawyer to manage the care for her mother, who is 86 and was diagnosed with Alzheimer’s nearly 10 years ago.

Although her mother has been in a long-term care facility in Virginia only 10 minutes from where Villanigro-Santiago lives, overseeing her care and personally tending to her as often as possible consumes a great deal of time and energy.

“It just wasn’t going to work,” she says of trying to juggle the demands of caregiving and working full time. “I was driving myself crazy trying to produce what my boss wanted me to produce. I wasn’t feeling well.”

Her husband, Al, who is 71 and has a solid job as a mediator, convinced her that they would be fine if she resigned.

“My husband said, ‘We can do this,’ ” Villanigro-Santiago says, acknowledging his patience, understanding and support. “He is the only breadwinner in this family.”

Her mother, Carmen, had always prided herself on being independent, and she had embraced the hectic pace of New York City, where she lived by herself in a walk-up apartment. But about 10 years ago, Villanigro-Santiago, who by then had settled in Virginia near her younger sister, discovered that her mother was skipping medical appointments. She was also becoming repetitive.

“You would ask her something, she’d tell you and then she would say it again,” Villanigro-Santiago says.

In 2013, Villanigro-Santiago and her sister Patty, who is 59 and works in communications, pushed for their mother to be tested about her memory lapses. The result was grim. Their mother, who had immigrated to the United States from Colombia in the 1950s, received a two-punch diagnosis of Alzheimer’s and rectal cancer.

The sisters decided to put their mother in a nursing home in New York for her cancer treatment and visited her every weekend. By the end of 2013, they had moved her into the nursing home in Virginia. Neither sister had the living space or resources at home to properly care for their mom.

Like many Latinos, Villanigro-Santiago faced criticism for having her mother in a nursing home.

“I remember talking to an acquaintance. She was very nasty, very opinionated,” Villanigro-Santiago says. “She said, ‘I’m not going to do what you did and put my mother in a nursing home.’

“Latinos have this idea of ‘never in a nursing home,’ ” she adds with exasperation. “My sister and I made the decision because it was best for my mother.”

Indeed, the Journals of Gerontology noted that Latinos are less likely than non-Latino whites to use nursing homes and hospice care. The reasons include a lack of awareness about formal services, an inability to afford them, and the view that they have a duty to shoulder the care for their ailing relatives, the journal said. 

But even with significant help from her sister and the employees at the nursing home, caregiving never ceases to be a huge job, she says. She visits her mother at least three days during the week and on the weekends.

Whether over the phone or during a visit, Villanigro-Santiago constantly checks her mother’s food intake, hygiene and grooming, and emotional well-being, and makes sure she’s taking her medication. She insists on doing her mother’s laundry and cooking some of her favorite meals, dutifully delivering them to her.

“I pray and wonder, How much more can I take?” she asks. “I deal with it on a day-by-day basis.”

Her mother has stopped grooming, sometimes doesn’t eat the food her daughter brings her and, for the first time, forgot Villanigro-Santiago’s birthday this year.

Villanigro-Santiago was not rattled by the unacknowledged birthday. Instead, she is grateful for the things her mother remembers.

“I’m blessed she still remembers my name,” she says.

‘In total denial’: When accepting an Alzheimer's diagnosis is difficult

Perla Castro’s parents took a trip back to Guatemala several years ago for a three-month stay to see if their dream of returning there to live was feasible. That’s when the gravity of Lesbia’s condition, which had been misdiagnosed as depression for years, showed itself. Lesbia sometimes thought she was back in Chicago and would get lost in their small apartment, not knowing the way to the bathroom or bedroom.

“It was very hard,” Castro says. “This was a reality check. We realized what a monster this condition was.”

Many relatives of those with Alzheimer’s report an unwillingness by some in the family to accept the diagnosis, even when it’s medically documented. Some 57 percent of Latinos see even “a significant loss of memory or cognitive abilities” as a natural result of aging, says the Alzheimer’s Association.

Even Castro’s father, César, rejects the notion that his wife has Alzheimer’s.

“My father is in total denial,” Castro says. “He’s waiting for a miracle. He retired to take care of her. He thinks we’re exaggerating, and that she’ll get better.”

Family photograph of Cesar and Lesbia Castro. Lesbia, 71, was diagnosed with Alzheimer's in 2005. Her family started seeing signs of her Alzheimer's around her early 50s.

Photo by Carlos Javier Ortiz

Lesbia, who lives with César and her other daughter in a home Castro owns, receives care from nurses several times a week and occasionally is seen by a doctor. Medicare covers some of the cost. She and her siblings once considered placing their parents in an assisted living facility, but decided against it after realizing that both could not be together in the same place, because they require different levels of care.

“We have caregivers we pay for out of pocket,” Castro says. “But it’s still not enough. You need care 24 hours a day, 365 days a year.” She adds, “If not for Medicare, I’d be bankrupt.”

Castro is not alone. In 2022, Alzheimer’s and other dementias will cost the nation $321 billion. This amount does not include the nearly $272 billion in unpaid caregiving. Medicare and Medicaid are expected to cover $206 billion, or 64 percent, of the total health care and long-term care for Alzheimer’s and dementia patients, while out-of-pocket spending is expected to be $81 billion, or 25 percent of total payments, according to the Alzheimer’s Association’s “2022 Alzheimer’s Disease Facts and Figures” report. The average total lifetime cost of care for someone with dementia is an estimated $377,621 in 2021 dollars.

The enormity of the responsibility is overwhelming, says Castro.

“It’s like I have a baby, someone who depends on you completely,” she explains. “Your life has to be built around caring for this person. Your life changes completely.”

She adds, “It’s taken a lot from everyone.”

‘You have to want to persevere.’ Caregivers find ways to cope

Villanigro-Santiago says she deals with her mother’s Alzheimer’s diagnosis by living in the moment and being resilient.

“Someone told me once ‘Don’t expect the worst, don’t expect the best. Don’t go in with any expectation,’ ” she says. “My mother leads, I go with the flow.”

William Rodríguez went through a rough period with his wife, María, after he retired and her personality changed. She became belligerent toward him at times. She would accuse of him of infidelity and often stayed up during the night, speaking to him, depriving him of sleep.

“It would be 3 a.m., and she’d be talking,” he says. “She wanted to make sure I didn’t sleep. One time I just got in the car and spent an hour in it so I could take a nap. It was like 2 a.m.”

The paranoia and aggression stopped when a geriatric psychiatrist prescribed her sedatives that calmed her and helped her sleep at night.

Home health aides come each day from 9 a.m. to 6 p.m. to tend to María, who several times has developed infections that have landed her in the hospital and required physical therapy and other rehabilitative care. Medicare covers the cost of medical equipment, such as María’s hospital bed and wheelchair, but not the aides, which the Rodríguezes pay for out of pocket.

In addition, after his wife was diagnosed, Rodríguez joined a Latino caregivers support group called Café con Leche. He treasured learning from caregivers whose loved ones were at different stages of the disease.

“I said to myself, ‘Wow, I’ve got it great,’ ” he says.

As María continues to decline, Rodríguez focuses on the glimmers of the woman he fell in love with. He has framed photos of her in her youth around his computer.

“I look at María now, and I still see the woman in those photos,” he says.

When their niece or nephew visit, he says, “she brightens up.” Rodríguez relishes such moments, seeing them as signs that she’s still “there,” he says.

“It can be emotionally difficult when you think about what could have been,” Rodríguez concedes. “It’s one of the most difficult things that can happen to a family. You have to want to persevere. You basically have to say, ‘I have to do this for him or her.’ ”