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

Summary

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Podcast Summary: Consider This from NPR

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

Air Date: November 20, 2025
Host: Juana Summers
Featured Guest: Donita Brown

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Episode Overview

This episode explores the intense personal, financial, and emotional challenges faced by family caregivers through the story of Donita Brown, who cares full-time for both her aging parents. The episode underscores the vast amount of unpaid labor provided by family members in America, the limited support from insurance and the healthcare system, and the importance of caregiver self-care and community.

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Key Discussion Points & Insights

1. Donita Brown’s Caregiving Journey

• Donita Brown cares for her elderly parents in her inviting home, which is filled with family mementos and warmth.
  • Quote: “I want to make sure that I have pieces of her and my grandmother, if you will.” (Donita Brown, 00:09)
• She orchestrates daily caregiving tasks: physical therapy, meals, medication management, all while largely handling these responsibilities alone, sustained only by occasional help from friends or extended family.
  • Quote: “On a day to day, it’s just me.” (Donita Brown, 01:11)

2. The Scale and Cost of Unpaid Family Caregiving

• Host Juana Summers highlights that caregiving is financially burdensome and often not fully covered by private or public insurers.
• Stats:
  • 2/3 of today’s 65-year-olds will need long-term care as they age.
  • In 2021, unpaid family caregiving accounted for $600 billion in labor annually (03:03).
• The story illustrates the “hidden workforce” of family caregivers as an essential, unpaid pillar in U.S. eldercare.

3. The Realities of Full-Time Caregiving

• Donita shares how she became a caregiver after her mother had a brainstem stroke. Initially thinking she was saying goodbye, she instead became her mother’s health proxy.
  • Quote: “From a cognitive standpoint, she couldn’t really process anything for herself. So I became her proxy.” (Donita Brown, 04:32)
• Donita chose to bring her mother home after being dissatisfied with the care in institutional settings.
• Her father, diagnosed with cancer, also relies on her after returning to Baltimore.
• Personal finances: Donita has not had a steady income in nearly a decade, highlighting both the sacrifices and the necessity of prudent financial management for caregivers.
  • Quote: "I haven’t had a steady income in almost 10 years... but I don’t want for anything.” (Donita Brown, 05:11)
• Both parents are beneficiaries of “great insurance” due to federal pensions, making Donita’s situation somewhat unique (05:27).

4. The Importance of Caregiver Self-Care

• Donita emphasizes that caregiver respite and self-care are essential, involving both basic health maintenance and comforting routines:
  • Quote: “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.” (Donita Brown, 06:19)
• She stays up-to-date with her medical needs, and incorporates small pleasures—like getting her nails done—or short yoga routines to manage stress.

5. Building a Supportive Community: The Binti Circle

• Donita founded the Binti Circle—a support group specifically for Black female caregivers (“binti” means daughter in Swahili).
  • The group has grown from 9 women to a vibrant community, meeting monthly and for quarterly outings focused on fun and stress relief (comedy, live music, etc.).
  • Quote: “I started Binti because it was the community that I needed and did not have. And we meet monthly… we build in comedy shows and music, live music, outings...that stress levels are reduced, that you feel safe in community." (Donita Brown, 07:27)
• Purposefully focused on Black daughters due to cultural and health disparities and the emotional weight carried by Black female caregivers.
  • Quote: “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.” (Donita Brown, 08:17)
• The Circle provides emotional safety, space for honesty, and the deep understanding needed for daughters caring for fragile or estranged parents.

6. Creating New Memories Amid Ongoing Challenges

• Donita intentionally creates positive experiences, like celebrating her mother’s 75th birthday with a casino-themed party.
• The episode closes with scenes of family togetherness and Donita’s unending multitasking—filling pill boxes, managing schedules, and maintaining a sense of hope and resilience.

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Notable Quotes & Moments

• Donita Brown, on her motivation and resilience:
  “Because it’s a gift like to be able to care for your parent even though it’s hard.” (07:27)

• On the unique stress faced by Black women:
  “You want to share how you really feel… and laugh about them because it’s real.” (Donita Brown, 09:00)

• On financial sacrifice and adaptation:
  “I haven’t had a steady income in almost 10 years… but I don’t want for anything.” (Donita Brown, 05:11)

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Timestamps for Key Segments

• [00:00-01:11]: Introduction to Donita Brown, her home, and daily caregiving routine
• [03:03-05:11]: National context—costs, statistics, and Donita’s path to caregiving
• [05:11-06:05]: Donita’s financial juggling and unique circumstances due to family pensions
• [06:05-07:11]: The importance of respite and self-care for caregivers
• [07:11-09:54]: Founding and the mission of the Binti Circle, focused solidarity among Black daughter caregivers
• [09:54-10:45]: Creating joyful memories and everyday moments with her parents

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Tone

The language of the episode is empathetic, candid, and warm—reflecting both the deep love involved in caregiving and the exhaustion and isolation it can bring. There is a sense of realism, balanced by stories of humor, resilience, and intentionality.

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This episode offers a moving, illuminating portrait of what it means to care for aging parents in America—and why caregivers must prioritize caring for themselves, too.

Transcript

[Juana Summers]

Donita 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.

[Donita Brown]

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.

[Juana Summers]

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. It says, family caregivers do the most and love the best.

[Donita Brown]

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, I went to take my dad. So next is getting him something to eat.

[Juana Summers]

She reaches into the refrigerator and she pulls out a container filled with French toast and sausage, a meal made by a friend. Are you able to get a lot of help from folks in your community or friends or family?

[Donita Brown]

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. But on a day to day, it's just me.

[Juana Summers]

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.

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And up first from NPR News, the House votes on the Epstein files. President Trump reversed course and said go ahead, but his Justice Department may yet block the release of some documents. Also, we get key unemployment numbers from the government. A month and a half, half late. What do the indicators say? Listen this weekend up first on the NPR app or wherever you get your podcasts.

[Juana Summers]

It's consider this from NPR. More than 2/3 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. Okay, upstairs 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.

[Donita Brown]

Thought I was just coming home to say my goodbyes to her.

[Juana Summers]

Her mother survived that stroke, though with a challenging prognosis.

[Donita Brown]

From a cognitive standpoint, she couldn't really process anything for herself. So I became her proxy.

[Juana Summers]

Donita Brown's mother initially did stents at a rehab facility and she was transferred to a nursing home. But 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 LA 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.

[Donita Brown]

I haven't had a steady income in almost 10 years. I haven't paid into retirement, but I don't want for anything.

[Juana Summers]

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?

[Donita Brown]

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 federal retired federal employee. She's kind of grandfathered into an amazing plan where she doesn't have any co pays or coinsurance. Her prescriptions are covered with that and that's taken out of her pension. My 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. Position.

[Juana Summers]

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.

[Donita Brown]

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, you get those moments. And so I got up and I found a yoga, boost your mood yoga workout that I did. You 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, going to get my nails done Friday and going to the dermatologist. Like I make sure that the basics, you know, like I say my well checks are done as well as doing things that I know that make me feel good.

[Juana Summers]

Brown also has built a community of fellow caregivers. It's called the Benty Circle. The name comes from the word for daughter in Swahili. The group first met in February 2021, just nine people. And every month since they've kept meeting, their numbers growing.

[Donita Brown]

I started Binti 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 is 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.

[Juana Summers]

And I know that the Mentee Circle focuses specifically on black daughter caregivers. Why was that focus so important to you?

[Donita Brown]

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. Processing 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 trans. We're a safe space. We know. I say it like, girl, like what 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. And you know what's even more challenging are those daughters that are caring for parents that did not parent them. So having a community of daughters that understand and can empathize with you with no judgment, that's important, right?

[Juana Summers]

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 one percent 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. Good afternoon. How are you doing today?

[Donita Brown]

Feeling fine. And how are you ladies doing?

[Juana Summers]

We're well, thank you. Ma. Ma.

[NPR News Anchor]

Ma.

[Juana Summers]

It's okay.

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Wake up.

[Donita Brown]

You don't wanna wake up.

[Juana Summers]

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 Hanse with audio engineering by David Greenberg and Valentina Rodriguez Sanchez. It was edited by Sarah Handel. Our executive producer is Sammy Yenigun. It's Consider this from npr. I'm Juana Summers.

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On Wait, Wait, don't tell me famous actors remember their days of obscurity, like when Pedro Pascal remembered the stress of being a waiter, the logistical labor of meeting everyone's needs in the right manner. You know, the act one, the water, act two, the drink. Listen to Wait Wait in the NPR app or wherever you get your podcast.

[Juana Summers]

Wildcard is where big name interviews feel like conversations with a friend.

[Donita Brown]

I mean, I can't believe how lucky.

[Wildcard Podcast Host]

You didn't say goodbye the right way.

[Donita Brown]

McConaughey, she told me.

[Juana Summers]

I don't think you're Princeton material.

[Wildcard Podcast Host]

I'm nothing if not open, I guess.

[Donita Brown]

I'm Rachel Martin. Watch or listen to Wildcard on the.

[Juana Summers]

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