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More Than A Job: Home Care For A Mom With Alzheimer's Disease

Celina Raddatz and her mother, Guadalupe Pena Villegas, at home in California.
Xavier Vasquez
Celina Raddatz and her mother, Guadalupe Pena Villegas, at home in California.

Celina Raddatz quit her job at a nursing home in 2014 when she realized she would have to take care of her mother full-time. Raddatz's mother, Guadalupe Pena Villegas, 83, suffers from Alzheimer's and bipolar disorder, a combination that sometimes makes her a danger to herself and others, and thus requires her to be supervised 24 hours a day.

Raddatz and one of her sisters, Rosalia Lizarraga, 61, had been caring for their mother together. But as the Alzheimer's progressed, the task became too stressful for Lizarraga.The full responsibility fell on Raddatz, who was determined to fulfill a promise she and her siblings had made their mother as children.

"When my mother was sane, she made us promise never to put her in a nursing home. And of course, us young kids said, 'OK, mom we would never ...' " Raddatz says. "But we never ever once ever thought that she would get sick like this."

As the elderly population in the United States grows, an increasing number of people require extra help in their daily lives. Because of this, the Bureau of Labor Statistics predicts employment for home health aides will grow 40% between 2016 and 2026. Hiring private caregivers, however, can be a financial burden for some families who can't afford to pay an average of $22,170 a year for extra help.

Many families take on the responsibility of caring for their aging relatives. In some cases, like Raddatz's, it can leave little time for other employment. Luckily, there are federally and state-funded programs across the country that allow elderly individuals like Raddatz's mother to use Medicaid funds to hire their own personal caregivers - including family members.

"We noticed that she was not right"

Raddatz, 57, was born in Mexico. Her mother, a widow, supported nine children as a food vendor. When Raddatz was 8 years-old, her mother married a U.S. soldier, who immigrated the entire family to the United States, where the couple had two more children.

Raddatz's mother and stepfather divorced two years after moving to the U.S. in 1971 and the family relocated Los Angeles.

"My mom was a very strong woman," Raddatz says. Due to gang activity in their east L.A. neighborhood, when Raddatz was growing up, her mother quit her job and began collecting welfare so she could stay home and keep an eye on her children.

"She would take us to school and bring us home. She would not let us walk alone to school."

Raddatz and her siblings first began to notice their mother changing in 2005 after she had a bad fall while working as a housekeeper.

"She kept telling this story that she fell at work and her head fell in her lap and she picked it up and put it back on her shoulders," Raddatz says. "We kept telling her, 'Mom, that's impossible' and she would get upset. And that's when we noticed that she was not right."

In 2006, Raddatz's mother was diagnosed with Alzheimer's disease.

"It's just constant, constant, work"

At the time, Raddatz was working as an activity director at a nursing home in La Mesa, Calif. Her job was to make sure the residents remained engaged with their community through special outings and social events. "You get close to these people after working there for so many years and we felt like a family. Definitely," Raddatz says.

It's a field in which she'd spent more than 30 years working across California, having started out as certified nursing assistant. And she noted, her inspiration to pursue a career caring for the elderly came from tending to her grandmother as a teenager.

So when it became clear that her mother could no longer live by herself, Raddatz's siblings turned to her as the most qualified to look after the elderly matriarch. Raddatz knew, however, there was a distinction between providing care professionally at a facility and caring for an elderly relative at home.

"It's a lot easier doing it at work because you get a break," Raddatz says. "And when you go home and you work taking care of your own parent, you don't get a break. It's 24/7, nonstop. It's just constant, constant, work."

But nonetheless, she quit her job at the nursing home and moved her mother in with her.

Shortly after leaving her job, Raddatz lost her apartment in El Cahon, Calif. and moved into her sister's home in Lakeside. She cares for her mother around the clock, preparing her meals, helping her bathe and dress, and keeping her calm and entertained during the day. They also share a bedroom, so Raddatz can assist her mother when she wakes up throughout the night.

It's more than a job. It's a family responsibility.

"Cash and Counsel" program

For about a year Raddatz cared for her mother without an income until one day in December, 2015, a social worker friend of hers recommended a government program called In-Home Supportive Services (IHSS). IHSS is what is called a "Cash and Counsel" program, which allows disabled and elderly individuals to use federal and state funds to hire their own help as they need it. These caregivers help their employers with anything from getting dressed to cooking meals to making sure they take their medication. Caregivers can be anyone the employer chooses (as long as the person passes a background check), including friends and family.

"I was very excited," Raddatz says. "I was happy to hear that the government had such a program because we were in so much need."

Raddatz registered her mother with IHSS and completed her background check. But when a social worker came to their home to evaluate her mother's level of need, she was only granted 44 hours a month to hire a caregiver for an hourly wage of $10.50.

Programs like IHSS use evaluations to determine how much time a day an individual requires assistance and with what tasks. For the evaluation process, a social worker from San Diego County came to Raddatz's home and did a physical and mental assessment of her mother. Because her mother is able-bodied and was able to respond to the simple interview questions the social worker asked, it was determined she needed less extensive care.

Raddatz was taken aback by how few hours her mother had been approved for, based on the amount of care she provided her mother every day. She felt the interview portion of her mother's assessment hadn't been thorough enough to accurately gauge her mother's need for care. The social worker only asked two or three simple questions during the interview, to which Raddatz's mother's responses didn't demonstrate the full extent of her dementia.

Caring for her mother "until the very end"

Raddatz had learned about a home care providers' union, UDW, during her registration with IHSS and reached out to them out to see if they could help. With UDW, Raddatz began the process of appealing the number of hours her mother was given. But even with the lack of paid hours, Raddatz says she is determined to care for her mother until the very end because "it's more than a job."

"It's a family responsibility because of the promises we made her when she was younger," Raddatz says.

After her mother passes, Raddatz says she intends to return to her old job and when she does, it will be with a greater understanding of the families she serves. It used to pain Raddatz to see families leave their relatives with dementia in a nursing home. Now, she says, she has a personal appreciation for the emotional and physical sacrifices that caring for an elderly loved one involves.

"I can relate more to these families and my heart goes out to them," says Raddatz says. "Even more so now than before."

After Raddatz was interviewed for this story, San Diego County conducted another evaluation of her mother's needs. In November, it was determined her mom was eligible for the maximum number of hours allowed through IHSS, which is 283 hours a month — approximately 70 hours a week. Additionally, Raddatz is paid overtime for every hour she works past 40 a week, is receiving back-pay for hours worked since June, 2017 and was given a small raise at the beginning of the year.

Raddatz says even though her hourly rate is lower than her old job, she is now making more than she did as a nursing home activity director. With the recent improvements to their standard and quality of life, Raddatz and her mother hope to move out of her sister's house soon and into their own home.

NPR's Alexi Horowitz Ghazi contributed to this report.

Copyright 2021 NPR. To see more, visit https://www.npr.org.

Corrected: March 19, 2018 at 12:00 AM EDT
In a previous Web version of this report, we mistakenly said that Celina Raddatz moved to her sister's home in Riverside, Calif. In fact, the home is in Lakeside, Calif.
Franziska Monahan