Parent + Caregiver: How to Do Both Without Burning Out with Juli Henderson

E16 — Parent and medical caregiver. Many parents of children with disabilities know the complexity of these two full-time roles. Juli Henderson, founder of In Our Arms, was the caregiver for her son Robert, who passed away at eighteen from a rare mitochondrial disease. She joins Amy Julia Becker to explore:

• Caregiver burnout, guilt, and isolation
• How to pace yourself
• Creating community (even when you’re exhausted)
• Practicing small, sustainable acts of self-care
• Navigating grief

Ask Me Anything: Record (or email) your question for our upcoming Ask Me Anything episode: amyjuliabecker.com/qr/

00:00 Caregiving, Disability, and Family Dynamics
07:05 The Distinction Between Mom and Caregiver Roles
09:28 Balancing Family Needs with Caregiving Responsibilities
13:47 Self-Care Strategies for Caregivers
17:17 Building a Supportive Community for Caregivers

MENTIONED IN THIS EPISODE:

• In Our Arms
• Amy Julia's book: A Good and Perfect Gift

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WATCH this conversation on YouTube: Amy Julia Becker on YouTube

SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com

JOIN the conversation on Instagram: @amyjuliabecker

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ABOUT OUR GUEST:

Juli Henderson is a disability communicator, writer, and advocate who supports families navigating disability, caregiving, and grief. She is the founder of In Our Arms, inspired by her son Robert, who passed away at eighteen from a rare mitochondrial disease. Through her writing, speaking, and nonprofit leadership, Juli offers hope and connection to caregivers around the world.

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Take the Next Step is produced in partnership with Hope Heals. Hope Heals creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com. Follow on Instagram @hopeheals.

Transcript

Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker (00:06)
I'm Amy Julia Becker, and this is Take the Next Step, a podcast for families experiencing disability. We've teamed up with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, and disability advocates about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters.

Your child matters. We need you among us. Today, I'm talking with Julie Henderson about caregiving. Many of us who are parents of kids with disabilities play a dual role. We are both their parent and their caregiver. So how do we navigate these roles? How can we care for ourselves and for our families and again, create a thriving ecosystem within our families for us and for our kids? Julie Henderson has experienced this tension firsthand.

in caring for her son Robert who died at age 18 from a rare mitochondrial disease. She now works to support families navigating disability, caregiving and grief through her organization In Our Arms. I hope you will enjoy this conversation as much as I

Julie Henderson, welcome to Take the Next Step.

Juli Henderson (01:29)
Thank you so much, Amy Julia, it's privilege to be with you.

Amy Julia Becker (01:33)
Well, it's a privilege to have you here. have again, well, we were just talking before I started recording. So I say again, as if other people have listened to that conversation, which they haven't, but I have been ⁓ following along with your story for ⁓ a couple of years now on social media. And I know that you were a caregiver for your son, Robert, your youngest child, I believe for many years. And you now continue to write and speak to fellow caregivers. So.

Would you start just by introducing our listeners to your family's story?

Juli Henderson (02:03)
Yes. So our family is a family of seven, which is, you know, a lot. ⁓ but my husband and I wanted a lot of children, so we have five and Robert was the youngest of that group and he was the twin to Victoria. So all of the kids, you know, came into the world and to our family as if everything was perfect, you know, the perfect word, the perfect child. And we, in contrast to how you

found out Penny had Down syndrome. We didn't know Robert had anything, really, until he was about two. He was a little behind Victoria on speech. And so we thought, okay, speech therapy, that's going to be the extent of it. And then I saw his first grand malgeneral seizure in the car. And that was the start for me of not only being Robert's mom, but suddenly being Robert's caregiver. And so all the other kids are adults now and they have ⁓

imprinted on me because of their care for Robert. It wasn't just I was raising our other children. It was like I had partners in raising him and they were my kids and it was my husband. so I was never doing it alone. But that's what started with Robert later on. We found he had a mitochondrial disease and something called a CHD2 component. And he had every type of seizure there possibly could be. And as the years went on from his birth to 18, when he passed,

We learned a lot about medical complexities and disabilities and just all the things that ⁓ come with a very rare seizure disorder.

Amy Julia Becker (03:38)
Will you tell us a little bit more about Robert both in obviously we've gotten a little bit of a sense of his medical complexity and history, but also just about kind of the place he held in your family and who he who he was.

Juli Henderson (03:52)
Yes. Wow. Robert, ⁓ if you walked past the wheelchair, you were going to get a big old hug and sometimes a very sloppy kiss. He was a delight. He ⁓ loved life. I would say when he passed, he was six foot and 150 pounds in a wheelchair. And he had really the capacity of about a three and a half year old. So all of that ⁓ really went backwards for him because of his seizures.

They just affected his brain so much. But what he did love was music and dancing. So we had lots of nursing, lots of care, but when he was in his wheelchair and he heard music, that was it for him. Music. And then he had this very interesting ability to do three iPads at a time. So if it was through school, homebound school was teaching him something on a speaking device or an iPad, he could do all of them. And when you moved it to a different screen, like we're going to move to something else.

He moved you right back to where he wanted to be. was very, very good about letting you know what he wanted to do on his screen. ⁓ So that part of his life still brings some laughter and joy to our family when we talk about Robert. He just, ⁓ he loved life. And we learned from him about how to take a day at a time and how to trust God and the very hardest, deepest parts of our journey.

Amy Julia Becker (05:13)
Thank you for just giving us a little glimpse ⁓ of who he was and what he meant to all of you. You mentioned before that you learned a distinction between being a mom and being a caregiver. Could you explain that distinction and why it might matter that we understand it?

Juli Henderson (05:31)
Yes, I think it really matters more than we discuss. I'm a mom first to obviously all my kids, but I had some time to grow into that. I knew I wanted children. They came and it was the nurturing part of my life. Most caregivers like me suddenly become caregivers. And so you have this dual job of I'm your mom and I'm nurturing, but I'm also this medical person in your life that I'm now doing.

school interactions, I'm managing meds and ⁓ changing meds, I'm now becoming your counselor. I'm doing things that normally a medical ⁓ group of people would be doing. And my husband, Chris, is a pulmonary critical care doc. So I had the privilege of having him alongside of me, but it still was predominantly me at home with him and then with the nurses. so we don't give mom's permission, I don't think.

to say I'm a mom, but I'm also caregiver. There are two different jobs, especially if you have other children that you're nurturing. That question actually, Amy Julia brings my heart a lot of, a little stress because I realized that we don't identify moms as having two different jobs. We just say you're a caregiver. And even with...

elderly parents that have age-related disabilities or regression, they're a daughter or they're a son who's taking care of their father or their mother or a sibling who's, I'm a sibling, but I'm also a caregiver for my sibling who has a disability. I don't think we separate that well. I think we probably need some more talking about that and how do we separate those two things? So you get to ask for help as a mom or a sister or a child.

who's taking care of an adult, but you're also this over here, this caregiver who has a lot of needs. You're isolated, you're tired, you're just exhausted some of times. And you feel inadequate, especially in the beginning.

Amy Julia Becker (07:40)
And do you think it helps if you have that distinction in mind that like, guess I'm a mom in your case, but also a caregiver. Like, does that help you mentally or emotionally or is it more something that it's helpful for other people to understand?

Juli Henderson (07:56)
I think both. think it first starts with me to say, okay, I'm a mom, I need help. I actually need to take a shower. I need to go to the bathroom. You know, these are practical things that we're talking about. I need five minutes just by myself as a mom. But as the caregiver, you don't always get that. And so there's that guilt of I'm not doing enough. I'm not medical, so I don't know what I'm doing all the time. So over here, I need to ask for help. I need to be willing to.

say, okay, the mom part is great. I'm doing a great job over here. I nurture my kids. I feed them. They're great. But over here, I don't understand all of the complexities of Robert's life. So could someone help me? Could I get some counseling through say the hospital or the clinic or another mom that's walked through something? I think that's

Amy Julia Becker (08:39)
interesting if we're only thinking about ourselves as a parent, we might resist asking for help because I'm supposed to know how to be a parent. Right. And yet to recognize, well, maybe you do know how to be a parent and you don't know how to be a caregiver because you didn't know you were signing up for that. so there are resources. ⁓ And obviously there are resources for us as parents as well. But it's a little bit different to be able to say like, no, no, no, you're not supposed to know how to be a caregiver. You're not supposed to know all the medical stuff. Ask for help. And also,

ask for help both in like what you need to understand and ask for help in the fact that you need to take a shower because someone who's like paid to come into your home does not need to take a shower. They just need to like do their job, which is being kind of present in whatever medical or physical needs are present. ⁓ But as a mom, you have to do all these other things. And I guess that brings me you mentioned this a little bit, but what do you think you would say to moms who are both in your situation? Like you've got.

for other kids who certainly need you to be their mom, even if they don't need you to be their caregiver, how did you and how do you advise people to kind of ⁓ pay proper attention to the other members of the family when you have one child who needs like this more intensive ⁓ and particular care? Yes.

Juli Henderson (09:54)
Well, we told our kids from the beginning when they started getting involved with school activities, you can have an instrument or an art, something cultural, and then you get one sport because it's going to be a carpool everywhere. I did ask for help with basketball teams or track teams or dance teams. And so that was helpful. Other moms helping me in the driving situation. ⁓ think you can get lost in the trying to do too much because you feel like you

can't show up for everything. And so there's always this something, at least in my case, in my heart that I need to do more, I need to do more because I'm not there for everything. I might get to one basketball game this season, I might get to one football game. So those things can be difficult. And I think if you could say to yourself, I can give my children boundaries as far as what they can do so that I can also manage how I respond to them when they really have something important that can I show up for that? So we did that. We also,

You know, the kids were older than Robert and so they were incredible helps with him. I, there's no way I could have it. Sounds like I did this all myself as a mom and that, you know, that's not true. No mom does, but, ⁓ our kids were very helpful. And so I could lean on them. we had an incredible church, life group and that supported us. So we had people around us. ⁓ but I think the main thing is if you can get to the place where you recognize that you need help.

That's one of the hardest things to acknowledge. And I'll make this comparison. say to my voice students that, and I think it's like being a mom and like being a caregiver. You're a person as a singer, but you're also an instrument. Those two things have to be separated. You're not just a person who has a voice. You actually are an instrument. You're vocal instrument. And I think if we can separate in music like...

I'm Julie, but I'm also a vocal instrument. Same thing in caregiving. I'm a mom, but I'm also a caregiver, which there are two different job descriptions. And this one over here, the caregiving one, it's a lot. I mean, it really is. You're managing insurance and all the things.

Amy Julia Becker (12:05)
So talk to me a little bit about what we know about the population of caregivers in America right now. Like what is beyond your personal experience? What do you know about this population?

Juli Henderson (12:16)
Well, I love this population. In the beginning when Robert was alive, I think I focused more on ⁓ advocacy for people with disabilities. And then when he passed, I realized there was a whole group of people I had really never acknowledged because I was one of them. I was a caregiver. I never was really in tune to how many there were. So if you think of in a room and you're sitting in a...

a bleacher or you're sitting in a church pew, every fourth person, there's one in four in the United States who are caregivers. That's several million people ⁓ who are caregivers for children. And so that's my journey. ⁓ But we're just now starting to talk about it. It's not, I'll say it's not a trend. It's not something that suddenly became popular. People have been doing this for a long time. In my own family, ⁓ my three sister-in-laws are taking care of their mom.

as caregivers, not even recognizing that they fell into that role because the parent needed the help, the mom needed the help. And the blessing for them is that in each of those families, there's one nurse. And so that's helpful. For me, it was great having Chris being a physician, but that's not always the case. So you think of one in four who might not have their insurance, the resources, the time might be working two jobs.

It's a very isolating job. honestly, caregivers are doing the job of the medical community. Medical community is doing a great job, but caregivers are carrying a lot of that load at home.

Amy Julia Becker (13:47)
Yeah, absolutely. And I guess within that, means that caregivers are caring for others in a way that just takes a lot of time and it takes a lot of energy physically and emotionally. So what is what would you say? You you gave the example of like taking a shower. But like, how can caregivers take care of themselves, especially under these very challenging circumstances of caring for another person in a very immediate way?

Juli Henderson (14:15)
Yes, I ⁓ would say first of all, recognize that you need the help and not being afraid to ask. So taking care of yourself for me is just five minutes. Just let me get out of the room for five minutes if a nurse is there or your child is asleep. ⁓ Take small increments. The advice I gave all every mom I've known is pace yourself. I was told that very early, pace yourself.

I've used that throughout Robert's care and probably after Robert's care too, that it's sometimes a long haul and you don't realize that in the beginning. So not trying to do a whole year's worth of ⁓ self care. You don't really always need to look that far ahead. Maybe five minutes a day, maybe you need to light a candle, maybe you need to sit down for five minutes and have a cup of tea. Maybe it's taking a walk outside.

has to be something that's just yours. Even if your child's in a wheelchair and you have to take, like I had to take Robert in his wheelchair and take him outside for a walk. I couldn't always separate myself from him in his care, but even outside, just little things like that. don't think it's always the grand gestures. We did a survey with caregivers through Inter Arms Blog and they were very specific about what they wanted. They can...

you know, find information and Google everything they need and AI and, do everything they need as far as research. But what they wanted was community. They wanted to be together. So we do a quarterly coffee and connection. call it where they just get together as moms mostly and talk about what they're going through or just don't talk about anything. Just have a cup of coffee. ⁓ but they want community. And so if you can find community either through your church, your neighborhood, ⁓

If there's a nonprofit in your area that offers say respite care for you, anything that allows you to take care of yourself first separate from the caregiver role, I think is really, really important. Again, we had great friends and family around us. So I wasn't lacking in that area, but I was such a kind of go-getter and I can do it myself. I don't need help. So a lot of moms are that way when you have a lot of kids. ⁓

I was afraid to ask because that showed weakness. And I had to learn to say, I can't do this. And I have to be able to take a moment with a girlfriend and cry and really tell her what I'm going through and what I'm feeling. So it starts with you acknowledging that you need the help and then find a way quietly to be by yourself. Candle, tea, coffee, a walk.

Amy Julia Becker (16:49)
Yeah, I appreciate that sense of, ⁓ I feel like you're coming back over and over again in a really helpful way to like acknowledging need, asking for help. And ⁓ also, I really appreciate what you said about like, it doesn't have to be a grand gesture. Like you don't have to go away for a week. I mean, maybe you can and maybe that would be awesome. ⁓ at the same time that these ⁓ small moments can actually make a difference. ⁓

I guess the last thing I'd love to have you think about a little bit is, and you've mentioned some of this, but is that point of like having a supportive community and how we cultivate that, especially in the midst of the demands of a busy family life in general, and then the particular needs of a child who needs this type of care. How do you actually cultivate that community?

Juli Henderson (17:41)
Well, I did it just with no experience. Honestly, Amy Julia, mine was I need help. I can't find another mom. I'm going to start something. So we started a support group at the clinic at the hospital. ⁓ And then when Robert passed, I felt I could do more. But my start was volunteering at a nonprofit. So I've been with several nonprofits, the latest one, Morgan's, and tried to educate myself about

the things I didn't know about. I know Robert's disease. I know my decontamination disease. I know what he had, but there were other rare diseases that I knew nothing about. And so I couldn't relate necessarily to you and Penny with Down syndrome, even though I teach a student with Down syndrome and I love her to death, but I didn't know that world. I just only know my world. So I went about just trying to find other moms.

at the hospital, hey, I saw a mom in the lobby and she looks like her child's in a wheelchair. Let me go find out who she is. Maybe exchange numbers. Maybe we have coffee. And then maybe she has a friend that also needs a mom to talk to. So that's how it really started very organically. And then when Robert passed, we set up a fund at Morgan's, the Robert Henderson Legacy Fund, where our goal is caring for caregivers. I know that the nonprofits that I've been a part of will take care of.

the family's needs as far as the person with the disability. But I wanted to focus on the caregivers because they're doing the work, but they're not acknowledged. So if you can find another mom in a clinic is a real good place, a dentist is a real good place, at the supermarket is a real good place too. If you see someone who's caring for a child, try to acknowledge your need and then reach out. So that happened for me. I know there's a better way to do it. I'm sure.

Another mom would have a great idea, but I was like, let me find a couple moms. Let's get together and have some coffee. Let's have a support group. And that's how we started. Just let's bring in some experts to talk about, you know, medical complexities. Let's get some therapists to come talk to us. and it was very organically grown into now the blog and, now in our arms.

Amy Julia Becker (19:47)
there's a simplicity to what you're saying, which is, you know, take a minute to figure out where other people might already exist who have similar needs, connect to them. And I loved what you said, acknowledge need and then reach out. And, you know, there's both ⁓ some courage and some humility in all of that, but there's like a really big upside on the other, you know, on the other side of that, as far as both getting the help you need, but also getting

just that sense of affirmation and connection ⁓ and help with others. And the last thing I'll say, and I'd love to give you a chance to say a last word as well if you want to, but it's just, I think the other thing that comes up for me is letting the experts be experts in the sense of not just, obviously we need to rely on other moms and friends and family and neighbors for carpools or church groups and all these things.

But there's also a sense of actually ⁓ not feeling like I have to know everything on a medical level. As long as I have a caregiving team on an expert level who I can trust. Right. And so there is a sense of like, don't feel like you have to know everything and be able to do everything, recognize what are the things that only you can do and figure those things out and also figure out who can come in, whether that's as a doctor or a therapist or a friend.

and do some of the other things to care for your family and your child.

Juli Henderson (21:16)
Great point, because in the beginning I didn't know not to try to be the expert because I needed to know everything. And so, you know, I tell moms, do not deep dive, do not deep dive ⁓ every time you get a new suspected diagnosis or something. Don't do it, it'll make you sick. And I got sick every time I tried to do that. So it took me several years to realize that I could be Robert's mom and let everybody else be the experts. I needed to know what I needed to know to care for him in our home.

but I didn't need to deep dive. That was dangerous for me because it gave me ⁓ fear and sometimes I would lose hope. And ⁓ as we know, hope is the thing you need to hold onto throughout caregiving. yes, is, be the mom, be the dad, be the sister, be the daughter, be that loving person, because everything is gonna stem from love anyway.

Amy Julia Becker (22:08)
I think that's a great place to kind of end this, ⁓ that everything's going to stem from love anyway, with a reminder under that ⁓ umbrella of love that we can acknowledge need, ask for help. I'm going add in and don't do the deep dive.

Juli Henderson (22:25)
Don't do it.

Amy Julia Becker (22:28)
So thank you so much, Julie, just for sharing your story and your wisdom. I know it was hard one, and ⁓ I'm sure that other people are gonna want to look up what you're doing over at In Our Arms. And ⁓ we will make sure that we've got links in the show notes and can send people your way.

Juli Henderson (22:43)
Thank you so much. I really also want to say I enjoyed your book so much. A Good and Perfect Gift. Just a great book. I'm recommending that. Thank you. ⁓

Amy Julia Becker (22:57)
Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities. We are currently here at the podcast gathering your questions for an upcoming Ask Me Anything episode. I would love to hear what you are wanting.

You can click the link in the show notes to record a question. You can send it by email. We would love to hear from you, however you want to communicate. upcoming, we've got some great conversations in store. Next week, I'm going to talk with Rebecca Wall about finding belonging in faith communities. Upcoming episodes also include how to connect to community, behavior as a way of communication, finding hope and joy in the midst of disability.

I am excited for what we have ahead this season. So please join me, follow, rate, review this show. We want people to know that this is out there. We want people who don't have a lot of time to do their own research, listening, thinking about these matters to just be able to have take the next step with them on a car ride or while they're doing laundry or taking a walk.

Please share this conversation with other people who you think might benefit from it. And as always, you can send questions, suggestions my way. There's a link at the end of the show notes where you tap send us a text. You also can email me directly at amyjuliabeckerwriter at gmail.com. And then finally, I want to thank Jake Hansen for editing this podcast and Amber Berry, my assistant, for doing everything else to make sure it happens.

I hope you leave this time with encouragement to start with delight, connect to community, and take the next small step toward a good future for your family.