ROCKWALL — The normally noisy Villalobos household is quiet. Two young kids are playing a video game, while their dad, Marvin, is lying down in the master bedroom, a blood pressure cuff attached to his left arm.
“It’s a little high,” remarks his stepdaughter, Bethany Zepeda, as she writes down his blood pressure reading and removes the device.
Villalobos, who is 33, suffers from dementia. Bethany is one of his caretakers. She is 11.
“I don’t mind. Really, I don’t,” says the sixth-grader, who exhibits a calm maturity that would be rare in someone twice her age.
“I like to help my mom,” she explains. “When I was 6, I knew how to wash my own clothes and I’d help her around the house.”
In fact, Bethany is among a legion of young caregivers of dementia patients, including those who suffer from its most common form, Alzheimer’s disease.
In households across the United States, an estimated 250,000 children ages 8 to 18 are helping to care for family members who are losing their ability to think, reason and remember, according to the Alzheimer’s Association, a national advocacy group.
“Kids and teens often live with a grandparent or even a parent with Alzheimer’s and, consequently, participate in the caregiving,” says Ruth Kolb Drew, director of family and information services for the association.
About 200,000 of the 5.4 million Americans with Alzheimer’s have the earlier-onset form of the disease. That means the younger patients mostly developed symptoms while in their 40s, 50s or early 60s rather than in their 70s or 80s.
“This is why some kids may be living with a parent with the disease, although it is more typical for it to be a grandparent,” Drew says.
Usually, these young caregivers are asked to spend time watching TV, playing a board game or simply talking to the dementia patient while another adult makes dinner or runs an errand.
“Kids are filling in the gaps as a member of the family,” Drew says. “They can learn to connect with their loved ones in the moment, even as their progressive brain disease makes them act differently.”
Marvin began showing signs of dementia about a year ago, after completing an aggressive regimen of chemotherapy and radiation for brain cancer. His family had been warned that he could develop dementia due to the severity of the treatment.
“We said, ‘Give him the treatments and we will worry about the dementia later,’” says his wife, Jackelin Villalobos, 31. “We were buying time.”
Last year, she noticed that Marvin was starting to forget things, such as what to buy when he got to the grocery store. He also couldn’t remember how to do his janitorial job for the Rockwall school district, forcing him to quit.
“We took him in for [dementia] tests and they said he had the brain of a 65-year-old,” his wife recalls. “The doctor told me, ‘I’m sorry. It’s going to be hard on you. It’s going to be a roller coaster because he’s going to start forgetting more and more.’”
The doctor also advised her last year not to leave her husband in charge of the children, she says, in case something happened that he could not handle.
That’s when Bethany became a caregiver — and more.
These days, the girl runs the household whenever her mother is working at a nearby In-N-Out Burger. Usually, it’s for a few hours after school and, occasionally, all day on school holidays and weekends. She juggles meals, homework, laundry, housekeeping and her father’s care.
“I feel bad that I had to ask her to do it because she’s so young,” her mother says. “But we have no other close family nearby, and we couldn’t afford to hire somebody.”
Placing such responsibility on a pre-teen might sound like a bad idea. But a Dallas psychologist, who was informed of the family’s situation, says he is amazed it seemed to work so well.
“This girl has a lot of responsibility dropped in her lap too early, but it could be worse, and I’m glad it’s not,” says Paul K. Chafetz, who specializes in dementia-related issues, including family conflicts that the illness can cause. He has never met the Villalobos family.
“She’s doing the best she can,” he says of Bethany’s caretaking efforts. “The risk is that she might have less time for age-typical experiences at school and with her friends.”
In her free time, Bethany says, she still plays soccer and the violin. But some afternoons, she has to give up other activities and come directly home.
Chafetz also praises Bethany’s mother for making the arrangement work.
“The mom is doing something right by keeping an 11-year-old feeling motivated and appreciated,” he says. “The mom is a functional true adult and should get credit for setting up a system that works and hasn’t melted down.”
On good days, when Bethany’s stepfather feels well, he helps with her chores and oversees the homework of her 6-year-old brother, Marvin Joel. The father also gets 5-year-old Daysi to mind her older sister.
“I love my family,” Marvin says. “I wish I could do more. It isn’t fair to them that I am so sick.”
Desperate for help
The services of an adolescent relative can be priceless when a family is both isolated and desperate for help.
Marvin and Jackelin met in El Salvador, their home country, when they were younger. But her family immigrated to New York, where she gave birth to Bethany, before being reintroduced to her future husband, who had moved to Dallas. The couple married here seven years ago.
“We wanted to make a better life here,” says Jackelin, who became a U.S. citizen three years ago. Marvin, who is in the U.S. on a work permit that he renews annually, says he is pursuing citizenship.
But the loss of his cleaning job forced the family to ask for help from friends, neighbors and their church, Cornerstone Community Church in Rockwall. Its members have contributed money and provided Christmas gifts for the kids.
In a moment of panic last year, Jackelin also sought help from the local Alzheimer’s help line.
The most pressing need was to continue her husband’s private health insurance, which costs them $443 a month under the federal COBRA program.
The Alzheimer’s office staff was so touched by the family’s struggle that workers took up a collection for a gift card, says Traci Beeson, spokeswoman for the Greater Dallas chapter. “Our board members also paid her COBRA for a month.”
Still, “there was a month from hell when we were paying everything out of pocket before COBRA kicked in,” Jackelin recalls. “We had to ask the doctors for samples [pills.]”
Marvin takes medication for depression, high blood pressure, headaches, anxiety and sleeping problems. He also takes a prescription drug that purports to slow the onset of dementia symptoms.
Jackelin is planning for a future when her husband will get progressively sicker and never work again. Beyond her day-to-day concerns about food, rent and other bills, she is staking her hopes on getting a new home through Habitat for Humanity.
“We can’t sit on the couch and just cry about it,” she says of their predicament. “We have prayed every morning and asked God to guide us through each day.”
Keeping the peace
On bad days, Marvin gets rattled by the rambunctious younger children.
“When they’re all home, they drive Marvin crazy,” Jackelin says. “He gets headaches when he’s stressed, and he screams a lot.”
Bethany admits that this is the only situation that challenges her, because she can’t always quiet her siblings quickly enough to please Marvin.
“Last year, when everything started, he didn’t have medication to make him calm down,” she says. “Now he does, and it’s better.”
On a recent school holiday, Bethany is following a list of chores that will keep her busy most of the day. The younger kids are supposed to clean their bedroom before they turn on the TV.
“Do your responsibilities,” Bethany tells the pair when they reappear in the kitchen just moments after tackling their messy room.
The kids retreat, but immediately start squabbling, forcing Bethany to run to their room to mediate before they can upset their father. The house quickly goes quiet.
Ever the vigilant caregiver, Bethany then pokes her head into the master bedroom and asks the slumbering figure in the bed, “Are you OK? Can I get you anything?”