AYESHA RASCOE, HOST:
In the U.S. today, almost 1 in 4 adults are caring for an aging or chronically ill family member or friend. And there is no national system for elder care, so caregivers mostly do it all on their own.
KATHY BARNES-LOU: You know, as a caregiver, you're an advocate. You're the person that cleans the home and orders the meds, gets the supplies, schedule doctors' appointments.
RASCOE: That's Kathy Barnes-Lou, whose mother had Parkinson's disease and lived with her in Memphis, Tennessee, until her death last year. She shared her story with reporter Kat McGowan, who's bringing us these portraits of caregivers.
KAT MCGOWAN: Barnes-Lou cared for her mom for over 10 years, and over that time, she had to let go of most of her old life.
BARNES-LOU: Caregiving is so difficult. Even on the really good days, it's just difficult because you're leaving behind relationships, careers, income, pensions, retirement. All of that I'm leaving behind.
MCGOWAN: Eventually, it became a 24/7 job. Her mother needed help with everything.
BARNES-LOU: Probably the last four years of her life, she was bedbound in a hospital bed here in our home. And so everything happens in those dimensions, which is, like, 80 inches by 36 inches. That is her world, and I'd become such an intimate part of that world.
MCGOWAN: Like the majority of all family caregivers, Barnes-Lou had no outside help. She had only her husband for support.
BARNES-LOU: So I would wake in the morning, and I would prepare her medication. And I would go into her room, and I would, you know, say, good morning, Mom. And I would tell her I love her and ask her what she'd want for breakfast. And she could not feed herself, so I would feed her.
MCGOWAN: Barnes-Lou also had to master skills like physical therapy and managing medications. She essentially became her mother's private nurse.
BARNES-LOU: She had a wound that I had to care for and dress and keep clean and maintain and change her clothes, change her sheets. Some people may never have the opportunity of changing sheets while someone is lying in the bed. That is completely dead weight, and you've got to learn how to navigate that, how to move them safely while getting soiled sheets off.
MCGOWAN: To keep her mother's body flexible, she had to move her arms and legs every two hours all day - and, for a while, all night too.
BARNES-LOU: Even though I was just physically exhausted, completely spent from the day's efforts, I would never reveal it to her. So I would kiss her, and I would leave her room. And then I'd think about, you know, just how much I love her. But at the same time, my body and my mind is sort of hunting and foraging for more physical and emotional resources. You know, eight or nine hours later, I know that I'm going to have to get up and do it again.
MCGOWAN: But caring for her mom was also satisfying. In some ways, she says, it was even a relief.
BARNES-LOU: I knew - when I shut that door, I was so comforted knowing she's in an environment where she is beloved. And so, therefore, that translates into me as well. I get a sense of peace and comfort knowing that I'm providing this for my mother, even though, you know, it is stripping me of my physical resources, my emotional resources at the same time.
MCGOWAN: Her mother died in April of 2025, and Barnes-Lou is still recovering from the toll that caregiving took on her mind and body. But she says she's clear about why she did it, and she has no regrets.
BARNES-LOU: So I wouldn't change anything. I would never change this experience, and I would do it all over again. I would sign right up.
MCGOWAN: For NPR News, I'm Kat McGowan. Transcript provided by NPR, Copyright NPR.
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