AYESHA RASCOE, HOST:
America is aging fast. Every day, 10,000 people turn 65, and a majority of them will eventually need long-term care, which Medicare mostly doesn't pay for. It seems like a brewing crisis, but so far, the burden falls on family caregivers. There's been virtually no help from the federal government. Caregiving is almost invisible work that's rarely acknowledged. We're talking to reporter Kat McGowan, a Rosalynn Carter mental health journalism fellow at the Carter Center, who's bringing us a series of portraits of caregivers, giving voice to a community that's often taken for granted. Kat, welcome to the program.
KAT MCGOWAN: Thank you so much.
RASCOE: So can you tell us more about family caregivers? What do they do, and what work do they take on?
MCGOWAN: They do everything from helping their loved one shower and dress to supervising home dialysis. There are about 63 million family caregivers in the United States, and if they were paid for their time, the bill would add up to about $600 billion a year, which, for context, is more than all out-of-pocket spending on health care for everyone in the country.
RASCOE: Wow. So are there any policies in the works to help support caregivers?
MCGOWAN: There's not much on the federal level, even though the idea has strong bipartisan support. Some of the states have created small tax credits for caregivers or changed workplace leave laws to help, but caregivers are mostly on their own to handle the huge responsibility.
RASCOE: That sounds like it would really take a toll on your mental health. You've talked to a lot of people in this situation. How is it affecting them?
MCGOWAN: Many family caregivers are stressed out and lonely, with high rates of depression and anxiety. Yet caregiving can be profoundly meaningful despite its difficulties. One person I talked to was Karla Rodriguez (ph), a 41-year-old who works in human resources in Denver. She cares for her father, who has diabetes, HIV and alcoholism, among other problems. Rodriguez is one of the so-called sandwich caregivers, balancing his needs with work and parenting. Here's what she told me.
KARLA RODRIGUEZ: As a caregiver for my father, I'm on call, where if he's refusing to go to dialysis one day, or there's an issue with a bill, or he needs to go get something, no matter if it's his HIV meds or diet coke, like, I'm on call. And there's something about that low-grade stress of not knowing, or maybe even worse, knowing that something is going to happen, you just don't know when, that really wears on you.
MCGOWAN: On top of the stress, like a lot of caregivers, she deals with guilt.
RODRIGUEZ: This is all pulling away time with my own children and my work. None of it stops. It's all still there. And I think that's something that caregivers constantly struggle with, which is, am I giving enough of myself to everyone who needs the care?
MCGOWAN: The thing is, Rodriguez and her dad weren't always close. Her dad had drifted in and out of her life and let her down more times than she can count. Eventually, the alcoholism and other diseases caught up with him. His life really fell apart, and she had to make a decision.
RODRIGUEZ: I will never forget, it was November 2023. I get a call from a hospital to go see him in the emergency room. And I went there, and I'm sitting there for a while, and then I realized they actually had put me next to my father, and I hadn't even recognized him. He also had not recognized me. That was a very hard moment. We both were confronted with the cold, hard facts of the situation we were in.
MCGOWAN: Given the circumstances, many people would've walked away. I asked her why she didn't.
RODRIGUEZ: I think I knew that I was the end of the line. If I hadn't stepped up, he would be dead, and he would've been dead quickly. And I just could not, in good conscience, have that on my hands.
MCGOWAN: Her father's been sober for two years now. Rodriguez understands her father better now and forgives him. And that's the thing about caregiving - it can be brutal, but there can also be unexpected rewards.
RODRIGUEZ: I've gotten to know more about my dad, more about his background, more about his own trauma. And so I have a lot of empathy for him and what got him into the situation that he was in. Yeah, oddly enough, I would say our relationship is better now than it's been in years. And I never thought that my children would have a memory of him, and they actually look forward to seeing him now.
MCGOWAN: She and her dad are open and honest with each other for the first time.
RODRIGUEZ: There's a level of transparency in our relationship that we've never had before, ever. And I know all of his scars and skeletons in his closet for the most part, and he gets to see that I love him regardless of that.
MCGOWAN: So you can hear how resourceful and strong caregivers can be, and they have to be. Like Rodriguez, most people are doing this on their own without much financial or practical support.
RASCOE: Reporter Kat McGowan. Thank you so much.
MCGOWAN: Thank you. Transcript provided by NPR, Copyright NPR.
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