A caregiver dad, Bradley Cooper and how a national crisis inspired an unexpected film

USA Today

2 days ago

A caregiver dad, Bradley Cooper and how a national crisis inspired an unexpected film
Matthew Cauli had no one to turn to when his wife, Kanlaya Cauli, had a stroke and was diagnosed with cancer during the height of the COVID-19 pandemic.
He left his graphic design career to care for her and their young son, Ty. Cauli said he quickly discovered there were few resources for caregivers. He took to social media to share his story and found a community of caregivers on TikTok, where he continues to post vulnerable videos about his family's daily struggles.
"I had to quit my job to go into poverty in order to get on Medicaid so that my wife could get some treatment," Cauli said in a recent social media post. "I've been in poverty for five years, credit card debt for five years. And I am stuck, I'm stuck, I'm stuck."
He shares the hardest moments of his caregiving journey, he said, so people understand how difficult it is.
'I just felt like I had nothing to lose," Cauli told USA TODAY. 'I wanted to show everybody, kind of, what it's really like.'
More: The caregiving crisis is real. USA TODAY wants to hear from you about how to solve it.
Soon, Cauli's story will be shared in a documentary on PBS. "Caregiving," which premieres June 24 at 9 p.m. EST, was created with executive producer and Academy Award-nominated actor Bradley Cooper and features caregivers from across the country alongside advocates and experts in the field.
The documentary is available to stream on PBS.org and the PBS App.
Cooper said his own experience caring for his father, who had lung cancer, inspired the documentary. Caregivers, he said, "are heroic people."
'Their ability to focus and give all of themselves is something that I stand in awe of,' Cooper says in the film.
Jocelyn Frye, president of the National Partnership for Women & Families, is featured in the documentary. Caregiving issues, she said, "are not niche concerns."
"The vast majority of families navigate these problems every day and it is important for people to see that they are part of a large community of people struggling to figure things out," Frye said.
She said she hopes the documentary leaves people "optimistic about the change that is possible, and determined to push for policies that we know can and do work."
Zulma Torres, also featured in the film, is a paid home health aide and a family caregiver for her granddaughter. She said she sees so many people who need care who can't afford it and can't access the resources to get the help they need.
Torres has grown to love her job as a caregiver, but said it's hard work that doesn't get the attention or support it deserves. Home care workers are the ones keeping patients at peace, washing them, feeding them and keeping them company when they feel alone.
"We care," Torres said. "We care for these patients."
'Punished for doing the right thing:' Documentary highlights common caregiver struggles
The documentary and the nation's renewed focus on caregiving is crucial, said Ai-jen Poo, executive director and board secretary for Caring Across Generations, because people are living longer than ever before. Meanwhile, she said, America "just isn't built to support care."
'The care crisis that everyone experienced during COVID really brought it home for people, in such a stark way, how little infrastructure we have in place to support us on such a fundamental and universal need," she said. "That has sparked a tremendous, exponential growth and awakening in our movement that can't be undone.'
A lot of people who care for their family members don't even know they are caregivers, she said. They often feel alone and don't know that solutions are possible.
Chronic illness can be hard on marriage. Studies show it's worse when the wife is sick.
'We each have a care story," Poo said. "And sometimes it takes seeing or hearing someone else's to realize that we're caregivers and that we actually share this really profound experience.'
Cauli lives in New York and doesn't qualify for the state's paid caregiver program because he is married to his wife. The state's Medicaid members can hire a personal caregiver that is a friend or family member, as long as they aren't the patient's spouse or parent.
If he divorced his wife he could apply to be her paid caregiver, he said. But that "sounds silly" to him.
'I feel like I'm being punished for doing the right thing,' Cauli said.
He's considered moving states to access better resources, but said that's "near impossible, financially."
He had to make major updates to their home to accommodate his wife's needs, including widening the doorframes and getting a new bed. He can't afford to hire in-home care.
"Five years in, I'm still doing everything," he said.
But Cauli has hope.
'I hope people start sharing their personal stories,' he said. 'I'm very hopeful that this documentary will start a movement to just help caregivers out.'
Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal Ventures and Journalism Funding Partners. Funders do not provide editorial input. Reach Madeline at [e-mail] and @maddiemitch_ on X.