The AARP reports that in Missouri alone, some 800,000 family caregivers contribute $11 billion each year in unpaid labor. Those Missouri caregivers are joined by almost 48 million others nationwide as they care for loved ones. Their work is worth $600 billion annually. Caregivers in rural areas like the Ozarks face specific challenges.
"Just the idea of isolation is much more pronounced in rural communities," said Maureen Templeman, gerontology professor at Missouri State University. "Oftentimes, people living in rural communities are lower in income. They might not have traditional jobs, you know, that have benefits that would allow them to, you know, take time off and things like that. So there's no doubt that rural communities are disadvantaged in all of those ways."
And not all caregivers are older. Many are younger. But instead of working a traditional job, they're helping care for loved ones.
"I'll get up early enough to make sure that I'm ready, and then I'll help her get cleaned up, either shower or helping her wash her hair in the sink really quick, just so she can have some sort of normalcy of taking care of herself, too," said Morgan Downs, who is a caregiver for Brittany Downing. "I make sure she's got a drink. I get her — she has a med box we keep track of. I get that all filled up, tapered up for what she needs for the day based on medicine doses. And then we do breakfast, so I get them breakfast. She works for a while. I make sure she has, like, a snack. I make sure she has lunch, her medicines, things like that. That's normally the day to day."
Morgan Downs is 27. For several years, she served as caregiver for Brittany Manning, who's roughly a decade older. Brittany lives with chronic pancreatitis. Brittany is also a parent, and she works remotely as a professional data analyst. Meanwhile, Morgan lives in a separate suite in Brittany's home here in Springfield. She's compensated through a stipend and shared household resources. For Downs, caregiving is highly meaningful work. But some of the days are really hard, even when they're also pretty great.
"Britney has fugue states. It's a severe, like panic attack, basically. And while her brain will basically start to shut off, but her body will still continue to move sometimes. She'll get into these walking patterns," said Downs. "One of the things I noticed, one time we were at Thanksgiving with the family. She's in the other room, and I noticed that her hands drop and I'm like, that's not normal. Brittany walks around like a T-Rex. I was like, that's not normal. I jump over my brother-in-law and their child and get to her before she hits the ground. And so I catch her just as she starts to like, because once her brain finally catches up, she passes out, basically. And so I got to her before she hit the ground, and she was safe. When you're a caregiver, you notice these little things about someone, and it's like you have the ability to help them not get worse in some aspects. That's one of the coolest things to like, say."
Experts say caregiving is often performed by women and that society doesn't recognize its full value. Esta Sutphin began caregiving for her grandmother at a young age, and began caring for her full time when she was 18.
"A lot of the women in most families end up taking care of the older people in their families. And I was always kind of angry with that, but sometimes you just have to tell people how to, how they can help, and that's all they're looking for. We always had a hard time with getting funding from the VA because it takes forever. It it takes absolutely forever. I mean by that, like I said, by the time that we thought that we were going to get the funding to be able to have for her to have a part time caregiver, we thought she was going to pass away," she said.
Maureen Templeman, a gerontology professor at Missouri State University, notes that the stress felt by caregivers isn't uniquely due to money pressures.
"When strain is measured with caregivers, it focuses on physical, financial and emotional strain, and emotional strain tends to be the type of strain that family caregivers report the most," she said. "And so a lot of times that will manifest in things like feelings of isolation, feelings of loneliness, overwhelm, not being able to balance their multiple roles. So yeah, a lot of studies focus on like burden and depression among caregivers, although not all caregivers do experience those things. Some caregivers do a really great job of finding meaning and purpose in caregiving."
While Dr. Templeman said a quarter of caregivers don't have any support at all, she said it's sometimes a very valued, honored role. She hopes our culture shifts toward acknowledging caregiving as skilled labor.
"Reframing Caregiving would first of all require that the public has knowledge of the value of caregivers, right? So maybe some people would be motivated by knowing the financial value that, you know, caregivers provide that would otherwise be the responsibility of someone," she said.
