Family is everything. Some Latinos believe that means one must forfeit their autonomy to become full-time caregivers to the ones that raised you.
By Stefania Lugli | April 26, 2023
Two tasks start Elizabeth Montes’ day: a morning prayer, and a routine check to make sure her mother wakes up, too.
Then: breakfast. Medication. Food. Shower. Hospice. More food. Standby in case her mother decides to make a trek for the kitchen. Bedtime. And, usually, a 2:30 a.m. wakeup call from Montes’ mother’s low blood sugar demanding attention.
“It gets very tiring. I can’t leave her by herself for a long time,” Montes said in an interview. “The other day she woke up, went to the bathroom [by herself] and I heard her yell out, ‘help! Help!’ When I find her in the hallway, she goes, ‘I can’t find my room. Where is my room?’”
Evangelina Rubio, 87, laid on her side, quiet, keeping eyes trained on her daughter as she divulged details of her mother’s recent years: health scares that took her to grave’s edge and back, a garden of orange pill bottles that’s grown by each passing spring and taking advantage of any resource that comes Montes’ way.
Latinos like Montes tend to shoulder the responsibility of caring after aging family members, which commonly forces adult children into a taxing position: to keep caregiving in-house, they find themselves shut-out from the rest of the world — sometimes resulting in children quitting their jobs to stay home full-time. Montes was a priest at St. John’s Episcopal Church until the end of 2020, when both her and her mother got severe cases of Covid. They both recovered, but Montes never returned to work while her mother never returned to her old health.
Montes always knew, as the oldest of three, that any geriatric care would ultimately fall on her shoulders.
“When you come from a traditional Mexican family, as the oldest, you’re it,” she said. “I have no regrets. But it gets lonely and frustrating, especially not being able to do all the things you want to do or when I’m left wondering what my capabilities are outside of my mom’s care. A lot happens in your head when you’re in isolation.”
Montes also has soured relationships with both her sister and brother. She said that neither of them wanted the responsibility in Rubio’s care and cut her off after years of mounting tension.
“Sometimes I feel like dementia is a blessing to my mom. She doesn’t remember that they’re not calling, that they don’t care. As bad as it is that she has dementia, it’s a gift. She avoids the sadness,” she said. “She can look at photos of her kids in her room without knowing they’ll never call.”
The emotional tax
A 2018 survey conducted by The Associated Press - NORC Center for Public Affairs Research documented Latino mistrust of long-term health services for seniors, with participants citing a lack of Spanish services and cultural accommodations.
The nationwide poll found that less than half of Latinos said it would be “easy” to find nursing homes, assisted living facilities and home health aides that speak Spanish. If they do, older Latinos suffer a variety of complications from care services that are not inclusive to their needs: additional stress, delays in care, higher costs, and even receiving the wrong type of care for their situation.
With full-time facilities shunned, Latino families like Montes’ keep caregiving in-house, shouldering the total weight of her mom’s needs.
“We come from a culture that is self-sufficient. Or, at least, we think we are more self-sufficient,” Montes said. “We hate to ask for help, and we’re ashamed when we do.”
Her mother, for example, refuses to let strangers see her in a wheelchair or using a walker. Rubio has suffered two heart attacks, a near-fatal case of Covid, has had several falls resulting in injury and has dementia — none of which curbs her pride.
Rubio was born in Mexico and is now a naturalized American citizen while Montes was born in the U.S. Montes is fully bilingual, but her mother doesn’t speak English — yet another barrier for attaining quality health care on her own.
Montes has tried leaving her mother in the hands of a rehabilitative assisted-care facility after one of her mother’s hospital stays, but quickly pulled her out after a fall incident on Rubio’s first night.
Montes’ love for her mother is evident. Her touches are gentle. She asks her mom if she’d rather sit up in a chair or lay in bed to watch TV — a subtle but important inquiry acknowledging Rubio’s own agency.
She’s poured all of herself into her mother’s health and comfort at the sacrifice of her own.
“Sometimes, when you take care of an elderly, you become… not sour, but you just lose connection with the outside world. You shut down emotionally and mentally,” Montes said. “You can become sicker than the sick person.”
“How do you know they’re taking care of your own — the same way you’d take care of them?”
December 2020. Montes warned the staff: Rubio was a fall risk. Her condition didn’t allow her to physically stand on her own, but her mind didn’t know that.
Montes remembers that her mother was placed in a room at the every end of a hallway, too many steps away from the nurses’ station. But she was assured of the facility’s abilities and sent home.
Hours later, while Montes slept, her mother would be rushed into a local emergency room for a CT scan.
“As soon as I came back (in the morning) I knew something was wrong,” Montes said. “I felt like people were hiding from me. Finally the nurse in charge told em they had to send my mom to the hospital overnight ‘because she fell.’”
Once Montes rushed to her mom’s bedside, she noticed bruises wrapped around her arms and blooming across her face.
“God knows how long she was face down before someone noticed her,” she said. “(Staff) moved her to a room by the main desk but at that point it was too little too late.”
Montes also claims that the medical team was reluctant to give her mother crucial medications such as her insulin because no one on staff spoke Spanish. So she pulled Rubio out and was forced to work out a routine, cycling through health and hygiene needs day after day.
“For that first while I didn’t have anybody. That was very heavy for me, to take over everything (nurses) had done. I had to do it myself. It wore me out,” Montes said. “If there was a doctor’s appointment, I’d have to lift her into a wheelchair and carry her oxygen. Sometimes we’d lose our transportation so I was forced to cancel. It was a mess.”
Eventually, Montes, desperate for aid, found home-visit nurses and other medical practitioners to provide care she couldn’t, such as checking Rubio’s vitals. One nurse practitioner from Mobile Medical suggested at-home hospice care. That scared Montes.
“I hesitated. I thought hospice was the end of life. I really didn’t think my mom was there and I didn’t want to make any decisions too soon. But the nurse practitioner explained to me that hospice is more concerned with her quality of life as far as pain goes,” she said.
Rubio, now, lives her final years with her daughter down the hall. The Montes household includes the pair, Montes’ husband and daughter, one cat and one dog.
Montes said that even if she assuaged her discomfort towards nursing homes, she could never afford it. She said her family was previously on food stamps before being kicked off for making $1 over the federal limit of weekly income. Her mother, an American citizen, is on Medicaid, which barely covers daily essentials such as adult diapers.
“Taking somebody to a place like a nursing home is very costly,” Montes said, pointing to Wichita-based Larksfield Place, which holds both a stellar reputation and steep cost: a studio for one resident in assisted living is $5,600 a month.
“Regardless of price, there’s still a risk. After my mom’s fall (at the first facility) I knew it would happen again. And I don’t blame nurses or aids. I know they have too much on their plate and are tired,” Montes said.
“And even then, I go back to the same concern: how do you know they’re taking care of your own? The same way you’d take care of them? You don’t.”
Outreach & accessibility
In 2020, over 55 million Americans were over the age of 65, with 5 million identifying as Hispanic, according to a 2022 report from the U.S. Department of Health and Human Services. By 2060, projections estimate a 148% increase for Latino seniors.
Supporting that growth? Latinos statistically live longer than non-Latino whites, despite showing poorer health and higher poverty levels. This, in combination with a cultural mistrust of outside help, can narrow the options available to a Latino family in need.
Montes thinks Latinos are also embarrassed to take advantage of resources outside of the community.
“Part of it is not knowing that these resources are out there for use. It’s not begging. It’s not wrong. It’s open to anybody,” she said, explaining that one of her first steps to overcoming that pride was when an employee from the Sedgwick County Department on Aging called her after a social worker referral.
The Department installed a ramp to the Montes home for Rubio’s wheelchair — free of cost. They got her a bed, a walker, and guided her towards other resources such as the Medical Loan Closet, a mutual aid effort that loans families with medical, bedroom and mobility equipment for as long as it’s needed.
The Department provides services to Sedgwick County residents who are over 60 and is also part of the Central Plains Area Agency on Aging, which the state of Kansas designated as a service provider to Sedgwick, Harvey and Butler counties.
Monica Cissell, the director of information and community services for the Department on Aging, explained that the office has connections with local hospitals, rehab centers and assisted living facilities that send referrals for long-term care when an elderly patient is discharged.
“Situations are really complex. If family members, neighbors, or the individual themselves who needs help calls, they often tell us what’s going on without knowing what service to ask for,” Cissell said. “Our resource center counselors dig into their needs and ask questions to figure out what we can assist with.”
She also said that the resource center fields many calls from non-English speakers. In those situations, counselors connect with an over-the-phone translation service to complete a needs assessment.
Note: there is no Spanish translation of the county’s Department on Aging website. Both English and non-English speakers can call 855-200-2372 to learn more about the local resources available to them.
Reasons to keep going
On hard days, Montes reminds herself that her mother’s days are numbered.
“I keep thinking, God knows when He’s going to say ‘come on over” to my mom, and that’s a reason why I keep going,” she said.
“When she got out of the hospital after Covid, doctors didn’t expect her to live much longer because of her condition. Three years later and she’s okay. There’s many things wrong, but she can talk, eat, get up and walk around with help.
When she thinks about her own mortality, Montes said that if she gets to a point where she or her husband can’t take care of herself, she’d want to be in a “community place” to feel safe and content in her placidity.
“I’m sure my oldest will tell me to come with them, and I think that would be nice, but with the way I value my independence I’d like my kids to be free and do what they need to do with their own families,” she said.
Montes chose to uphold the cultural expectations she felt as a Mexican-American to handle her mother’s care herself. It’s a responsibility she chooses every morning she wakes up and every night her mom’s low blood sugar shrieks for attention.
She doesn’t think, however, that her choice should stay the norm.
“Culture might say that the oldest takes care of the parents, but every family has a different dynamic. What’s important is that the parents get taken care of according to those dynamics and everyone figures out a way to make that happen.”
“Just don’t forget your parents. The best thing to do, always, is just show up.”