For the approximately 48 million caregivers in the United States, caring for another person brings joys and rewards.
Mark Applegate, dementia care specialist at SeniorAge Area Agency on Aging, lost his mom last year to Alzheimer's. He was able to continue to make memories with her even as her memory faded.
"She couldn't hardly speak, but she could play the piano. People would gather around her that didn't normally talk, and they would sing or they'd tap their foot while she'd play the piano and stuff, you know?" he said. "As it developed, she stopped being able to play the piano, but I figured out that I could play the piano on my phone, and somehow her arms would drop down a little bit. Her shoulders would drop down a little bit. It's like I was connecting with her to making her less stressed out. So it's constantly a big a big battle of expectations. One thing I learned that was very helpful for me is finding daily joy and time with mom, instead of just dwelling on what's what's missing from her."
But despite the joys that come with caregiving, there are also challenges. Hannah Wingo's oldest child, Gage, who's 10, had congenital CMV at birth.
"You know, we were young parents at the same time as our entire group of friends were, and we had this different situation that was feeling isolating," she said. "And so it was easy to kind of slip into a dark place because you're not, I don't think, naturally equipped to handle that. And so, you know, as Gage grew older and through different times, I struggled more or less. And I think the opportunity, the gift to be parents to other children, too, kind of helps you along and out of that. And then I've also sought out some therapy that has been a help just recognizing, like, why I feel certain ways. And the root of the anger that I feel is normal and is just another emotion, the same way that joy and love and, you know, things I would rather focus on. But for the toll on your mental health, I think what factors into that is the isolation, is the things that make your situation look so very different from everything else you're seeing around you. So seeking support was big for me, but it took a long time."
Maureen Templeman is a professor in Missouri State University's gerontology program.
"Usually when strain is measured with caregivers, it focuses on physical, financial and emotional strain," she said, "and emotional strain tends to be the type of strain that family caregivers report the most. 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."
Nia Howard, program and engagement specialist with Burrell Behavioral Health Be Well Initiatives, said caregivers need to allow themselves grace.
"I think guilt is an interesting thing, and it does come in. It comes in for a lot of us in lots of different ways," she said, "but the idea is that we want to be able to have some refresh in our day. We want to be able to refresh. And I think, too, even if you have somebody that is able to come in and sit with your person that you're caretaking, maybe it's a college student that comes in and reads to them for an hour or something like that, that also gives the person you're caretaking another person in their day, too. They have a chance to still have another relationship because we as people can't do it all. We can't do it all. I don't know if anybody knows that, but we can't do it all. We need to be able to have people on our side."
Hannah Wingo leans in on friends who also have children with disabilities and attends regular therapy sessions. She focuses on the positives of caring for Gage and what it's taught her.
"What have I learned most about myself? That I am not in control. That it is not up to me if he walks or talks or eats the way every other kid eats. That it's not up to me, ultimately, whatever outcome may come for him. So I have learned about myself that I cling to any amount of control by nature, like I want to be in charge. I want to decide how things work out, and caring for Gage and being Gage's mom has taught me that that is an illusion and that even if we think that we're making things better, you know, or getting to decide, it's not up to us."
Hannah Wingo, is a former employee of Ozarks Public Broadcasting.
Dax Bedell provided production support for this story.
