Leaders hear one caregiver’s story: ‘I work seven days a week, I have no paid time off’

A small middle-aged woman wearing a tan suit arrived at the room early and took a seat at the end of one of three tables arranged in a horseshoe shape. As the audience filtered in, the woman occasionally glanced down at two pages of paper on which she’d printed her presentation. Other speakers arrived and took their seats. They were doctors, health care experts, leaders of nonprofit organizations and political leaders.

The woman sat erect and still as the program got underway. Her turn to speak came at 12:34 p.m.

“My name’s Linda Orndoff,” she said, “and I live outside of Pittsburgh. I’m a full-time caregiver for my mother and my grandson, who’s autistic. My mom has needed home health care services since 2015. For the last 10 years she’s really declined mentally. She tries to run away when no one is watching her ….”

For five minutes, the room remained silent as Orndoff told her story to those gathered at the Thelma Lovette YMCA in the Hill District. The event, hosted by U.S. Rep. Summer Lee, D-12th District, served as a forum to discuss concerns about health care for Pittsburgh-area senior citizens and as a platform for officials to tout some of the prescription benefits included in the Inflation Reduction Act, signed into law last year and mentioned last week in President Joe Biden’s State of the Union address.

Health and Human Services Secretary Xavier Becerra, seated with Lee at the head table, specifically mentioned a $35 cap on Medicare-covered insulin, free preventive vaccines under Medicare Part D, and Medicare’s ability to negotiate what it pays for prescription drugs.

But throughout the session, the weight of Orndoff’s unfolding story continued to tug on both speakers and guests. Early on, she listed her 88-year-old mother’s health care problems: chronic kidney disorder, blood disorder, cataracts that require surgery, near total loss of hearing.

“I’ve been having a harder and harder time communicating with her,” Orndoff said. “And I think it’s contributing a lot to how disoriented she’s becoming.”

Putting her mother in a nursing home is unthinkable, Orndoff insisted.

“There’s too many communicable diseases,” she said. “Just having to live somewhere else would kill her soul. She’s too used to being in her home, having her kitty cat, visits from her children. There’s just no way I’d send her to a nursing home.”

In order to provide proper care for her mother and grandson, Orndoff several years ago quit her job at a company that builds barges in Brownsville.

“Suddenly, I had to figure out how to live on poverty wages, with no health insurance,” she said. “And everything about my life changed. I had to make really difficult decisions sometimes.”

Once, while repairing a small bridge on her property in West Pike Run, Washington County, she stepped on a rusted nail that penetrated deeply into her foot. She couldn’t afford a visit to a hospital emergency room, so she spent the next few hours pouring peroxide on the wound. She got lucky, and the wound eventually healed.

Then, in 2019, fire destroyed her home. “Everyone was relying on me to get a new home there and get my mother and my grandson back home,” she said. It took four months to replace the dwelling.

“Being a caregiver in today’s society is exhausting,” she continued. “I work seven days a week; I have no paid time off. I’ve lost so many of my friends because I don’t have time to go to see them. It’s nearly impossible to get any backup help. We’re in a real health care crisis because no one else wants to work this job with no benefits and no security. 

“I’m 61 years old, I’ve been working hard my whole life, and now I’m terrified to death of retirement. I have no savings, and I don’t understand why our system leaves those of us who are caring for the elderly in such a precarious situation.”

Orndoff pleaded for more resources for those who care for loved ones. Then she thanked Lee, Becerra and the Service Employees International Union, of which she is a member.

Once Orndoff finished, the program continued, with representatives of various nonprofit agencies describing programs that reach the elderly and marginalized communities throughout the Pittsburgh area. Toward the session’s end, however, Becerra returned to Orndoff’s story and addressed her directly. “You’re one of those quiet heroes in America,” he said. “I so admire you for taking on your family.”

The session ended, and Stefanie Small, clinical director of Jewish Family and Community Services, approached Orndoff. Small offered assistance, which included putting Orndoff in touch with programs that provide respite care so Onrdoff could take some time away from her home-care duties.

In a press gaggle that formed several feet away, Lee said Orndoff’s story “lays out a lot of the solutions we need.”

“She talked about the ways in which home health care workers are undervalued and underpaid, right?” Lee said. “She talked about making sure we’re creating and generating resources that go directly to them so they can do the work they want to do.”

Lee emphasized that home health-care workers need a living wage, family leave and affordable health care. “They can’t take care of their loved ones, their communities, if they can’t take care of themselves,” Lee said.

Government programs pay Orndoff to provide home care, but she said it’s not enough. “I’m getting $12.65 an hour,” she said. “You can’t live nowadays on that. I feel privileged that my mother turned the property over to me and it was paid off. I think of all the other thousands and thousands of health care workers who are trying to live on those wages when rents are $1,200, $1,400 a month, or they have mortgage payments. I don’t know how they survive.”

Orndoff said she views the session and Becerra’s visit as extensions of Biden’s speech, which included a focus on health care issues.

“That gives me hope,” she said.