How caregivers can prevent burnout

Summary

Life Kit: How Caregivers Can Prevent Burnout

Episode Release Date: February 17, 2025
Host: Marielle Segarra

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Introduction: The Growing Demand for Caregivers

Marielle Segarra opens the episode by highlighting the increasing number of unpaid caregivers in the United States, which surged from 43.5 million in 2015 to approximately 53 million in 2020. She introduces TK Dutes, a former healthcare provider with 15 years of experience supporting caregivers, who provides insights on how caregivers can prioritize their well-being. The episode features in-depth conversations with two caregivers, Jacqueline Revere and Treasure Empire, exploring their personal experiences, challenges, and strategies for preventing burnout.

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Personal Journeys: Jacqueline Revere and Treasure Empire

Jacqueline Revere's Story
Jacqueline Revere shares her abrupt transition from a burgeoning career in late-night TV to becoming a full-time caregiver. In 2016, six months into her dream job, she received a distressing call about her mother's deteriorating health due to Alzheimer's disease. This unforeseen responsibility expanded as she also became the primary caregiver for her grandmother, plunging her into a demanding role at the age of 29.

Key Quote:
"Becoming a caregiver is a big transition. You go from taking care of yourself... to taking responsibility for the physical, emotional and financial well-being of another." ([04:16])

Treasure Empire's Experience
Treasure Empire, a multidisciplinary artist from the Bronx, recounts her sudden immersion into caregiving after her mother's mental health declined post-surgery. Managing the care of both her mother and grandmother, Treasure emphasizes the emotional, mental, and physical toll caregiving exacts, often leaving little room for personal life and leading to feelings of isolation and depression.

Key Quote:
"I was just kind of like dropped into the middle of caring for two people who I love... there is a huge emotional, mental and physical side of care that we just don't talk about that much." ([04:29])

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Emotional Impact: Navigating Complex Feelings

Caregiving introduces a spectrum of intense emotions, including guilt, loss, shame, and resentment. Both Jacqueline and Treasure discuss the necessity of acknowledging and processing these feelings to maintain mental health.

Key Quote:
"I was very ashamed for a long time because I didn't know how to explain my role... but I had to learn. Like, no girl, like you're traumatized." ([08:46])

Marielle underscores that understanding and accepting these emotions is crucial, advising caregivers to be gentle with themselves and recognize that their efforts significantly impact those they care for.

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Takeaway 1: Feel Your Feelings

Caregivers are encouraged to allow themselves to experience and process their emotions fully. Mourning the loss of personal plans and adjusting to new responsibilities is a vital step toward emotional resilience.

Key Quote:
"Guilt, loss, shame, and resentment are just a few of the feelings that caregivers have while learning to care for their loved ones. The only way through is to be gentle with yourself." ([09:07])

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Takeaway 2: Establish Your Own Care Team

Building a robust support system is essential for caregivers to prevent burnout. Delegating specific tasks to friends, family, or professionals can alleviate the pressure and provide much-needed respite.

Key Quote:
"For someone that's entering into this world, I would suggest that you install a care team for whoever you're taking care of as well as a care team for you." ([10:09])

Jacqueline emphasizes the importance of identifying who can help and assigning them specific roles, such as tidying the house, preparing meals, or simply providing emotional support.

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Takeaway 3: Navigate Workplace Support

Balancing caregiving responsibilities with professional life can be challenging. Caregivers are advised to have open conversations with their employers about their needs, explore flexible working arrangements, and understand their rights under laws like the Eligible Leave for Employee Caregiving Time Act.

Key Quote:
"Making sure company culture is aligned with your situation is important." ([13:26])

TK Dutes highlights the precarious nature of unpaid caregiving work, noting the lack of protections and the societal expectation to juggle multiple roles without adequate support.

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Takeaway 4: Find Time for Yourself

Self-care is non-negotiable for caregivers. Engaging in activities that provide relaxation, joy, and personal fulfillment helps replenish emotional reserves and sustain long-term caregiving efforts.

Key Quote:
"You should not be trying to take care of anybody before yourself... there has to be time that is yours." ([15:22])

Practical strategies include setting aside quiet time in the mornings for meditation or journaling, scheduling short getaways, and making personal appointments to ensure self-care remains a priority.

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Advocacy and Systemic Support

Both caregivers stress the importance of advocating for better support systems and policies that recognize and remunerate caregiving roles. Voting, petitioning, and participating in movements aimed at securing paid leave and social supports can drive meaningful change.

Key Quote:
"Learning about advocacy, learning movements that are happening to get family caregivers paid... is kind of a field where we need to advocate for what we need in order to get it." ([14:42])

---

Building Resilience and Community

Over time, caregivers develop resilience and adapt to their roles, though not without challenges. Building a community, whether online or through shared experiences with other caregivers, provides a vital support network.

Key Quote:
"Caregiving is about growth. The person you were when you started the journey is not the person you become." ([17:31])

Jacqueline's creation of the "Mom of My Mom" social media account exemplifies how sharing experiences can foster a sense of community and provide support to nearly 800,000 followers.

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Final Takeaways: Embracing the Journey

Marielle recaps the key lessons from the episode, emphasizing the importance of emotional acknowledgment, building support systems, leveraging workplace policies, and prioritizing self-care. Additionally, a bonus takeaway encourages caregivers to make meaningful memories, reinforcing the value of their relationships despite the challenges.

Key Quotes:

• "Takeaway number one: Feel your feelings and process them." ([19:12])
• "Take takeaway number two: Let people help you." ([19:23])
• "Takeaway number three: Learn all the ways your job can support your role as a caregiver." ([19:40])
• "Takeaway number four: Make time and space for yourself non-negotiable." ([20:02])
• "Bonus takeaway: Make memories." ([20:08])

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Conclusion: The Transformative Power of Caregiving

The episode concludes by acknowledging the profound personal growth that caregiving fosters, despite its inherent difficulties. Jacqueline and Treasure reflect on the invaluable life lessons learned and the deepened appreciation for the senior community and human connections.

Key Quote:
"Treasure Empire: ... I can look past the monetary value of a human, which I think is what's most important." ([18:36])

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Supporting Caregivers

Marielle encourages listeners to support the caregivers in their lives by being proactive, understanding, and offering tangible assistance. By implementing the strategies discussed, caregivers can navigate their roles more sustainably and prevent burnout.

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Produced by Sylvie Douglas. For more episodes on resilience and career transitions, visit npr.org/lifekit. Subscribe to the Life Kit newsletter at npr.org/lifekitnewsletter.

Transcript

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[Marielle Segarra]

You're listening to Life Kit from npr. Hey everybody, it's Marielle. Caregiving is a full time job, and it's one that more and more Americans are taking on. In fact, the number of Americans acting as unpaid caregivers rose from 43.5 million in 2015 to about 53 million in 2020. Before she was a reporter, TK Dutes was a health care provider. For 15 years, she worked alongside caregivers every day to help them take care of their loved ones, who might be children, older folks, folks with disabilities, folks who are chronically ill. And she could tell that her presence offered a short and rare break for family members who were on duty all hours of the day. On this episode of Life Kit, TK talks about how caregivers can take care of themselves. She talks with two caregivers about what's worked for them, what they wish they'd done differently, how the experience has changed them, and how we can support the caregivers in our lives.

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[Jacqueline Revere]

Imagine this. You're living it up in New York City six months into the job of your dreams in late night tv and you get a call that changes everything. That's what happened to Jacqueline Revere in 2016.

[Treasure Empire]

I was on the subway. I received a phone call from my mom's friend who said, there's something wrong with your mom. You need to fly home.

[Jacqueline Revere]

When she got home, it was really bad. Jacqueline's mom had Alzheimer's disease and her mental state had been declining. The mortgage hadn't been paid in two months and a foreclosure notice waited for her.

[Treasure Empire]

There was like spoiled food everywhere and my mom was not in a mental space where she could be coherent.

[Jacqueline Revere]

Before getting sick, her mother was also taking care of her own mother with dementia. Suddenly, at age 29, Jacqueline became a full time caregiver, taking care of both her mother and her grandmother.

[Treasure Empire]

I was just kind of like dropped into the middle of caring for two people who I love and so there is a huge emotional, mental and physical side of care that we just don't talk about that much.

[Jacqueline Revere]

Becoming a caregiver is a big transition. You go from taking care of yourself, your immediate family, maybe some pets, to taking responsibility for the physical, emotional and financial well being of another, often coming out of nowhere, shattering any plans you may have. How did it feel going from college to being a full time caregiver? Did you feel like, you know, whoa, this not fair or like, damn, like I gotta leave school? What was that transition like?

[TK Dutes]

It was just like I had to mourn, you know, the life that I was setting up, the life that we even prepared me for.

[Jacqueline Revere]

Treasure Empire is a multidisciplinary artist from the Bronx who got her start in music and has since branched off into streetwear and swimwear through her company, Conch and Cowrie.

[TK Dutes]

I'm also my mother's primary caregiver and I have been my entire adult life, so I just crossed my 20th year as a caregiver.

[Jacqueline Revere]

She was leaving for college when her mom had a botched knee replacement Surgery that set off a ripple effect of eight more surgeries on the same knee and eventually the other knee as time went on. It would render her mom permanently disabled and in need of continuous care.

[TK Dutes]

You know, as an artist, it was a blessing and also a curse to tour because I didn't know who was going to take care of my mom. And so it just stopped me from doing things. Not that she asked me to, but what are you going to do when you see somebody down, like, go play superstar?

[Jacqueline Revere]

Which brings us to takeaway number one. Feel your feelings. You're going through a life altering event and there's no blueprint for taking care of someone you love. Can you talk more about mourning the life that you, you know, you guys prepared you for? Has your mom ever talked to you about that?

[TK Dutes]

I mean, we do. It's very difficult to be, you know, I feel like it's messy. Like the roles that we play and have played, you know, we've been each other's caregiver for the same amount of time, and we're very different people. My mom obviously loves me and loves me being around, and I love to be around, but as a person, you know, if not for these situations, I probably would be far away.

[Jacqueline Revere]

Caregiving changes your life in profound ways. And it also feels like you're having the biggest case of FOMO ever. You start seeing milestones slipping away, and you might think, that should be me. For Jacqueline, who started taking care of her family at age 29, it was hard to see her peers posting about their promotions or engagements online.

[Treasure Empire]

And it got to a point where I had to, like, stop social media because, like, it's seeing the highlights of people every day. Meanwhile, I'm here and I'm like, oh, my grandma's incontinent. Like, how do I figure that out? You know? Or she's, you know, just calling me every name to exist. Yeah, I'd be like, where did you get that word from? That's like, I haven't heard that since.

[Jacqueline Revere]

She was pulling out those old curse words at you.

[Treasure Empire]

Old ones, Hussey, trollop. I was like, what you got? You got. Let me write these down.

[Jacqueline Revere]

Eventually, somewhere between changing bedsheets and fielding old school name calling, it can feel like you're being punished or that you're being forgotten.

[Treasure Empire]

When you're home every day with two people that you love who are sick and no one is stopping by, or when someone calls, they ask, how are the people that you're caring for? And they don't ask about you. You Start to feel like you're not important. And then, you know, I went through various stages of depression feeling worth.

[TK Dutes]

I was very ashamed for a long time because I didn't know how to explain my role. Like I'm not a paid caregiver and I just felt guilty. I thought that I was lacking or that somebody could do it better, but I had to learn. Like, no girl, like you're traumatized. You know, these things were very difficult to deal with alone.

[Jacqueline Revere]

Guilt, loss, shame and resentment are just a few of the feelings that caregivers have while learning to care for their loved ones. The only way through is to be gentle with yourself and know that everything you do has an effect on the person that you're caring for.

[TK Dutes]

It's very easy to give in to the frustration of caregiving. But it's what I have to do to be the best person I could be. Like, to really check myself. Like, not for her, but for me. Like, you want to be bothered, you want to make her feel like you bothered all the time. You cool with that?

[Treasure Empire]

Forgive yourself because when you're starting out, you will make mistakes, you will get short tempered and so you will build up resilience over time. And so you sitting in a corner completely having a meltdown will happen one year, but in year four, you're like just another Tuesday.

[Jacqueline Revere]

Part of building up resilience is the team of people you have around you.

[TK Dutes]

For someone that's entering into this world, I would suggest that you install a care team for whoever you're taking care of as well as a care team for you. Whether it's your best friends or a therapist, some team of two to three people that you can depend on and make sure you set schedules for your own life goals.

[Jacqueline Revere]

That's takeaway number two. Establish your own care team.

[Treasure Empire]

Start by figuring out who's all a part of it. Everyone's not meant to bathe, mom. Everyone can't mentally put their head around it.

[Jacqueline Revere]

Yeah, they're like, nah, not that, but I'll send you, you know, $500, you know exactly. Your care team can have specific jobs. Delegating those jobs can invite your community to help alleviate some of the pressure. Start small if you're nervous.

[Treasure Empire]

Whether it's ordering someone to come and tidy up the house, having a meal, sent, scheduling some time to just show up and just walk. Something that one of my friends would do is she would just stop by and she would say, hey, let's walk. And something like so simple would just like help me to clear my mind.

[Jacqueline Revere]

Friendships and other relationships look very different for caregivers. Every second is accounted for, and not all of our friends are built to deal with complicated feelings and situations. Jacqueline experienced major shifts in her circles.

[Treasure Empire]

There are people who I expected to show up who were like, this is too much. I can't. Every time we talk, you're like crying and I don't really want to sit on the phone with you crying every day. And so though I couldn't offer grace in that moment, I can totally see, like, how my dynamic as a friend had changed and I couldn't show up for them the same way and they couldn't show up at all. To be honest, while caring for my mom, most of the friends who I made were people who had already cared for someone or who were currently caring for someone.

[Jacqueline Revere]

Yeah, it becomes a club, so to speak. Yeah, sometime our friends may not ask for help for many different reasons, but it doesn't mean it's not needed. Being proactive can mean the world to our caregiver friends.

[TK Dutes]

I guess in terms of relationships, I'm very thankful for everything that anybody could do for me because I don't expect it. And we are all we really do have. I don't know if that's the healthiest way to have to live, but it's definitely the American way.

[Jacqueline Revere]

Takeaway number three has to do with the most American thing ever Work Hustle Grind Making your current workplace understand your challenges is important.

[Treasure Empire]

Having the talk with your boss, trying to help them understand what it means to give care to someone. Like many work cultures, understand caring for kids, but they don't really like get what it is to care for a senior.

[Jacqueline Revere]

When you're having the talk with your employer, consider asking about the possibility of other options, like hours based on need, compressed work weeks, or hybrid work schedules. Look into your workplace's policies and state laws to see if you're eligible. Under Elect, which is the Eligible Leave for Employee Caregiving Time act to use paid vacation time or sick days to care for loved ones. If not, see if unpaid leave is an option under the Federal Family and Medical Leave Act. Financial burden is a huge stressor for caregivers. It impacts where you can live, what kinds of services are eligible to care their loved ones. And since we live in a world that celebrates productivity overall, it narrows down work options extremely. So making sure company culture is aligned with your situation is important. Here's treasure.

[TK Dutes]

Just remember that this is unpaid work and there aren't a lot of rights for caregivers. Like you can't deny someone for being disabled, but you can totally deny me for my role as a caregiver to someone disabled.

[Jacqueline Revere]

That's another way we can show up for caregivers. Jacqueline reminds us to vote, petition, be on the front lines fighting for paid leave, caregiver and domestic workers rights.

[Treasure Empire]

Learning about advocacy, learning movements that are happening to get family caregivers paid, the movements to have more social supports like this is kind of a field where we need to advocate for what we need in order to get it.

[Jacqueline Revere]

While you work to advocate for the care of your loved one, Treasure, my personal self care guru reminds us to make time for ourselves. That's takeaway number four. Find time for yourself. Whether it's just to help alleviate your stress, having hobbies or working towards larger goals is important because Treasure told me that you have the right to be in need as well.

[TK Dutes]

You should not be trying to take care of anybody before yourself. Your day's got to start for you first. Your relationship with your life has to begin first and you have to construct a system that allows that. And if it can't be first, then it has to be last. But there has to be time that is yours.

[Jacqueline Revere]

What, what does your system look like or like? What could a system look like?

[TK Dutes]

A good system for me is start your mornings quiet either like movement, meditation just to stretch your body and I pray over myself to hold onto my life. I try my best to also journal these days just to cut the time off to just make sure that however you felt throughout the day, you could leave it somewhere.

[Jacqueline Revere]

You can also build time in with yourself by making distance booking. A short getaway or spa day outside the house gives you something to look forward to. That's for you and only you. Making appointments is a way to make sure you stick to your self care plan. As for Jacqueline, remember at the top of the episode she was six months into a promising career as a TV writer when she had to stop and switch gears. She turned to online courses and let her care work infuse her writing.

[Treasure Empire]

I wrote a pilot based on care and so what's sort of happening is that like care and letting care take up my life and caring for people that I love and trying to learn as much about it has led me into the same path that I had started in.

[Jacqueline Revere]

Being in community online has been so instrumental to Jacqueline's caregiving that she started a social media account, mom of My mom where she shares her experience. Experiences taking care of and spending time with her mother who had Alzheimer's disease. Nearly 800,000 people look forward to her advocacy, having a place to vent or just finding support there.

[Treasure Empire]

And so my life became care.

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Because.

[Treasure Empire]

I didn't know how to be a caregiver without my life becoming it.

[Jacqueline Revere]

Caregiving is about growth. The person you were when you started the journey is. Is not the person you become.

[TK Dutes]

I shouldn't have expected of myself to know what to do as someone who's not taught how to do that, to have to learn in a very survivalist way. But nobody really taught me. I didn't start like dealing with things where even the medical teams would be like, let's teach her.

[Jacqueline Revere]

Until recently, caregiving is hard. You'll be challenged at every turn, but the life lessons and gifts it provides are invaluable.

[Treasure Empire]

I hate to say it, but if I could do it again, I would because I would be so much better at it and I would have less resentment and I would just know how to move about it in a much healthier way and know that there is good that can still come from something that is so sad.

[Jacqueline Revere]

What have you learned as a caregiver that's going to carry into the rest of your life?

[Treasure Empire]

I love the senior community in a way that I would not have because they are very much invisible. When you're not contributing to society in a monetary way, I think people tend to not see you. I can look past that now. I can look past the monetary value of a human, which I think is what's most important.

[Jacqueline Revere]

Let's recap. Takeaway number one. Feel your feelings and process them. Know that you're trying your best and no one is perfect. So be gentle with yourself.

[TK Dutes]

How do you take care of yourself? How do you show up for yourself?

[Jacqueline Revere]

Takeaway number two, Let people help you. Make sure you have support for your loved ones and yourself.

[Treasure Empire]

Figure out all of the supports that you have. Let them know what they can do to help.

[Jacqueline Revere]

Takeaway number three, Learn all the ways your job can support your role as a caregiver. Have frank discussions with your employer about how you can be best supported at work. Find out if your state laws or workplace policies offer paid or unpaid leave. Takeaway number four, make time and space for yourself non negotiable.

[TK Dutes]

I need the balance to be able to keep it going. Otherwise I'm no good to either of us.

[Jacqueline Revere]

Finally, a bonus takeaway. Make memories.

[Treasure Empire]

I think what's most important is making moments, making value of the time that you have really important. Morning.

[Marielle Segarra]

That was reporter TK Dutes for More Life Kit. Check out our other episodes. We've got one on resilience and another on how to switch careers. You can find [e-mail] LifeKit. And if you love Life Kit and you just cannot get enough, subscribe to our [e-mail] lifekitnewsletter. This episode of Life Kit was produced by Sylvie Douglas. Our visuals editor is Beck Harlan, and our digital editor is Malika Grebe. Meghan Cain is our supervising editor and Beth Donovan is our executive producer. Our production team also includes Andy Tagle, Margaret Serino and Claire Marie Schneider. Engineering support comes from Patrick Murray, Neil Tievalt, and Carly Strange. I'm Marielle Segarra. Thanks for listening.

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