Expensive and exhausting: Why caregivers need to care for themselves, too

0:00Donita Brown's home is warm and inviting. The walls in the living room are painted burnt orange, and there are family photos and heirlooms placed tastefully around the space. I want to make sure that I have pieces of her and my grandmother, if you will. Some of this furniture is my grandmother's. So these are from her home, and my mom actually did that painting there. You can see her name, Joan. The painting, which is placed beneath an end table, is of a pair of praying hands framed by a beam of light. Donita Brown is full of energy with a bright smile that immediately draws you in. When we meet, she's wearing this black hooded sweatshirt.

0:36It says family caregivers do the most and love the best. So I'm just getting in with my dad. He had physical therapy. And so typically check on my mom, make sure she's okay, and then get him something to eat. She's eaten. Her girlfriend just left, so she was here to watch her. It takes a village while we, you know, went to take my dad. So next is getting him something to eat. She reaches into the refrigerator and she pulls out a container filled with French toast and sausage, a meal made by a friend. Were you able to get a lot of help from folks in your community or friends or family? So my aunt picked up the medication today, the prescriptions, and then my mother's friend, she came over today to sit with my mom while I took him to therapy.

1:25But on a day-to-day, it's just me. Consider this. Caregiving services for seniors can easily cost more each year than the average American makes. And health insurers, both government and private, may not provide the coverage that people need. That leads many people like Donita Brown to step in and do the work for free. From NPR, I'm Juana Summers.

2:00It's Consider This from NPR. More than two-thirds of today's 65-year-olds will likely need some kind of long-term care as they age, whether that's in-home care, assisted living, or a nursing home. And all of those services can be very expensive, so many people rely on unpaid family caregivers. In 2021, their work accounted for about$600 billion in unpaid labor annually, according to AARP. That is more than half a trillion dollars worth of work done by people like Donita Brown every year for free. To the extent that there is a typical day for Donita Brown, this is what it looks like. Caring for two aging parents in the same home, their rooms separated by flights of stairs.

2:49Upstairs, there's her mother, Joan, who had a brainstem stroke in 2018. Downstairs, there's Donita's father, Bill, who moved in last year. And now, navigating between those floors and navigating the needs of her two parents, Donita is the glue that holds everything together. Before she became a full-time caregiver, Brown was on leave from her job at the Centers for Medicare and Medicaid Services, serving in the Peace Corps in Eswatini. When she learned that her mother had a stroke, she rushed back to the U.S. I thought I was just coming home to say my goodbyes to her. Her mother survived that stroke, though, with a challenging prognosis.

3:29From a cognitive standpoint, she couldn't really process anything for herself, so I became her proxy. Donita Brown's mother initially did stents at a rehab facility, and she was transferred to a nursing home. But ultimately, Brown was not satisfied with her mother's care, so she decided to bring her home and take on caring for her herself full-time. And last year, Brown's father returned from L.A. to Baltimore, too. He was unable to care for himself independently after a cancer diagnosis. Part of how she's able to navigate life as a full-time family caregiver for both of them is that she'd already downsized and cut her personal debt.

4:07I haven't had a steady income in almost 10 years. I haven't paid into retirement, but I don't want for anything. Can you just walk us through how you make the finances of being able to care for both of your parents work? How does the math make sense? My mother is on Medicare. They're both on Medicare and have supplemental insurances. My mom's pension helps with her supplies, her monthly supplies. She has great insurance as a retired federal employee. She's kind of grandfathered into an amazing plan where she doesn't have any co-pays or co-insurance. Her prescriptions are covered with that, and that's taken out of her pension.

4:51My dad, like, I'm blessed because both of my parents were fiscally responsible, if you will. So I would say I'm in a unique position. Donita Brown is intentional about everything, methodical about how she plans care for her parents. but also about how she cares for herself. As we talk, she repeatedly brings up the idea of respite. It's breathing, just sometimes just staying in bed and breathing. And my devotionals, I always set the tone before I get out of bed. Yesterday I was feeling kind of yucky. You know, you get those moments. And so I got up and I found a yoga, boost your mood yoga workout that I did.

5:35You know what I mean? So I try to do those things as well as I stay up on my annual checkups and physicals and therapy. There's been an uptick. You know, most people think about self-care as nails and hair and massages. I do those too. You know, I'm going to get my nails done Friday. And going to the dermatologist. I make sure that the basics, like I say, my well checks are done, as well as doing things that I know that make me feel good. Brown also has built a community of fellow caregivers. It's called the Benti Circle. The name comes from the word for daughter in Swahili. The group first met in February 2021, just nine people.

6:20And every month since, they've kept meeting, their numbers growing. I started Benti because it was the community that I needed and did not have. And we meet monthly. We have quarterly outings, respite with rhythms, and letting go with laughter. So, you know, we build in comedy shows and music, live music outings. We try to make sure that there is impact, that it's making a difference, that stress levels are reduced, that you feel safe in community, you have more skills and tools that you need for this gift of caregiving. Because it's a gift, like to be able to care for your parent, even though it's hard.

7:07And I know that the Bente Circle focuses specifically on Black daughter caregivers. Why was that focus so important to you? It was important because it's the black daughter. And this is just what I knew, not even when I started to do research. This is just what I knew is like the daughter holds it together. And so as a black woman with the health disparities and just how we are just disproportionately affected by so much, I felt like it was important for us to have that space and caring for a parent is different. Like I say, looking at the fragility of your parent, processing the grief of losing the parent that you knew, processing that you won't be able to have the conversations with your mom that you did before, right?

8:00Processing that your mom doesn't know you, you know what I mean? So that's why I felt like we need this community to, because to be honest, you know, sometimes when we have things, it's not easy, right? And you want to share how you really feel and be trained. We're a safe space. We know. I say it like, girl, like with my mother, sometimes I say, girl, if you did not treat me good, you would be dead by now because she drives me crazy. And so we're able to share those stories and laugh about them because it's real. It's really. And you know what's even more challenging are those daughters that are caring for parents that did not parent them.

8:40So having a community of daughters that understand and can empathize with you with no judgment, that's important, right? She walks us up this narrow staircase that leads to her mother's bedroom, and she and Bill are hanging out there. And a game show, the 1 % Club, is playing on the TV. What did you play? She tells us that another goal for her as a caregiver and a daughter is to continue creating memories, to try to celebrate her parents now while they're still here. Hanging on the bedroom door is the outfit for her mother's casino-themed 75th birthday party. Her mother's reclining, resting in bed, and her father sits in an armchair near the foot of the bed with a fleece Baltimore Ravens blanket draped over the top.

9:27Good afternoon. How are you doing today? We're fine. How are you ladies doing? We're well, thank you. Ma, ma. Ma. It's okay. Wake up. You want to wake up? We chat for a little bit and then head back down the stairs, slipping on our shoes before we head out. And as we do, Donita Brown is already looking ahead. She's holding an orange pill bottle in her hand. It's time now to fill the pill boxes to make sure that both of her parents have the care that they need. This episode was produced by Alejandra Marquez-Hance, with audio engineering by David Greenberg and Valentina Rodriguez-Sanchez. It was edited by Sarah Handel.

10:11Our executive producer is Sammy Yenigan.

10:16It's Consider This from NPR. I'm Juana Summers.