Tom Graffeo, 62, didn't know what to think when his partner was diagnosed with Parkinson's disease 20 years ago. They'd been together for about a year and Lewis Kornegay was in his early 40s at the time, going to the gym after work every day and doing yard work.
The diagnosis was shocking, Graffeo said, but ultimately not much changed in those early years. "He was so able-bodied at that point," he said. And Graffeo didn't know much about Parkinson's, so the concept of "caregiving didn't even cross my mind."
Kornegay continued his active lifestyle for a while, but gradually his Parkinson's began to slow him down. What started as Graffeo accompanying Kornegay to doctor's appointments as a second set of ears slowly turned into helping Kornegay in and
out of his wheelchair and interpreting his impaired speech for doctors. There's no way around it, Graffeo said: "Things have started to shift."
"It's sensitive because you don't want to take away their independence," Graffeo said. "I guess, probably for a while, I was in denial that I was a caregiver."
Before Kornegay was diagnosed, Graffeo said he'd only thought about caregivers as paid professionals. And he isn't alone in thinking that way. There are 63 million family caregivers in the United States, according to the Caregiving in the US 2025 report from AARP and the National Alliance for Caregiving. But more than half don't realize that's what they are, according to a 2025 caregiver survey conducted by Comfort Keepers. That data is reflected in information from Archangels, a national movement to support and honor caregivers. April Ibarra, a gerontologist and care adviser at Arlow, an AI-powered app for caregivers, has started to call the phenomenon "caregiver creep." It might start with picking up groceries and medications, and then snowball into helping a loved one shower and use the bathroom.
"I think part of the problem is we just don't talk about this stuff early enough," Ibarra said. "We just kind of jump in and start doing things, and we don't even realize we've become a caregiver, or probably wouldn't even identify ourselves as a caregiver. And then before you know it, you're knee-deep in the weeds."
Adult children, especially, can feel a "sense of duty" to care for their aging parents, said Jeff Salter, founder and CEO of Caring Senior Service. But most of the time, family caregivers aren't trained or prepared for the tasks they need to do to help their loved one.
"No one would ever call it a burden, but it does become a burden because they're being asked to do something that they may not be even comfortable doing," Salter said. "But they know they have to do it."
'You don't realize until after it's over'
Angeline Giammona, 38, was on FaceTime with her mother when her mother started to show signs of a stroke. That night, in September 2024, her mother went to the emergency room where doctors confirmed the stroke, and the next day diagnosed her with glioblastoma. She had three brain tumors, doctors said, and 12-18 months to live.
Giammona, who was 15 weeks pregnant at the time, rushed through the two-hour drive to be with her parents at the hospital. Her mother never fully recovered from the stroke, Giammona said: "She could barely walk and barely communicate. And then it's like, suddenly we're babysitting 24/7."
"This isn't just about getting her out of surgery and get her in rehab and we can go resume our normal life," she realized. "It's like, how do we get her up the stairs? She can't walk the same anymore."
Giammona said her foray into caregiving − which she juggled alongside parenting, pregnancy and a full-time job for the 10 months until her mother died − was "all of a sudden," but also had a creep-like element.
"We could not anticipate what was to unfold and how the work as the caregiver expanded over time," she said. "We realized that literally every minute of every day at home was just kind of a guessing game. And our responsibilities were increasing every single day. And then before you knew it, we were completely underwater with all the things that we had to do."
Giammona didn't have time to consider that she was a caregiver; it took all of her energy to focus on one task and then the next. She gave birth four months before her mother died, on Aug. 3, 2025.
"You don't realize until after it's over," she said.
Caregivers need help. Some struggle to find support, while others struggle to even ask
Giammona said her experience made her realize the gaps caregivers face when seeking help. Her frantic MyChart questions about her mother's health could go unanswered for days, and relying on Facebook groups for support didn't always yield the best results, either.
"Those days feel so long," she said. "You are so stressed, you're so worried and you're constantly researching what is happening and what's going to happen next that you don't sleep, you don't eat properly, you don't drink."
She's since launched Ember, an AI platform for caregivers that provides quick, appropriate, accurate information about specific illnesses.
A lot of caregivers struggle to ask for help when they need it, Ibarra said, or wait until there's a crisis to put a care plan in place. Some people don't even realize they can get professional care help, Salter said.
"It just sort of gets out of control, and then it almost gets too difficult to bring other people (in)," Ibarra said. "But it does get super complicated, fast."
When Ibarra talks with families, she asses the capabilities of the care recipient, too, because too often she sees caregivers doing "everything for them" when that's not necessary.
Graffeo said he's relied on friends and family to help with some doctor's appointments when he can't get off work. Some of them bring meals when Graffeo is out of town. And he's grateful for the Parkinson’s Foundation and all of the resources and support groups they offer for caregivers.
"It's definitely important to have that support system," he said, adding that it took him a while to accept the help − and to not feel guilty about it. There was one summer, Graffeo said, when he stopped running in the mornings.
"My friends, my support system, were like, 'What are you doing? If you don't take care of yourself, you can't take care of him,'" he said. "Which in hindsight, of course, that makes perfect sense."
But sometimes, he said, caregivers need to be reminded. Now, Graffeo feels like he and Kornegay have found a good balance. Graffeo gets up and plays pickleball before work each morning. He makes sure Kornegay is dressed, has breakfast and that the TV is "good to go" before he's out the door.
"That gives me peace of mind," he said.
Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.
This article originally appeared on USA TODAY: What is caregiver creep? The slippery slope of 'just helping out'
