The Dark Side of Caregiving Nobody Talks About

Can you love the person you care for and still feel angry, resentful, exhausted or desperate for the caregiving to end?
Brent has spent nearly two decades caring for his wife, Trudy, after she was diagnosed with young-onset Parkinson’s disease at 33. In this honest conversation, Brent and Jeanette discuss the side of long-term caregiving that is often hidden behind inspirational quotes and toxic positivity.
Brent explains why caregiving can feel like a “death by a thousand cuts,” how unspoken resentment almost broke him, and why acknowledging difficult thoughts does not make someone a bad caregiver.
They also discuss anticipatory grief, caregiver guilt, respite care, therapy, hospice and the small resets that can help caregivers make it through overwhelming moments.
In this episode:
• Why emergency medicine could not prepare Brent for long-term caregiving
• The reality hidden by the “sanitized” version of caregiving
• Why toxic positivity can leave caregivers feeling more alone
• Loving the person while resenting the caregiving situation
• The thoughts caregivers are often ashamed to admit
• Why difficult feelings do not make someone a bad caregiver
• What Brent means by “caregiver purgatory”
• How therapy helped him manage anger and resentment
• The small actions that help him reset during difficult moments
• How respite care can help even when using it creates guilt
• The difference support services made to his family’s survival
• What Brent would tell someone beginning a long caregiving journey
• Why families should communicate and seek therapy early
• The story and mission behind Held Light
Brent created Held Light to say out loud what many caregivers feel but cannot express. Through his videos, podcast and online community, he helps caregivers feel seen, understood and less alone.
Find Brent by searching Held Light or @heldlight on YouTube, Instagram, Facebook and TikTok. You can also listen to the Held Light podcast on Spotify.
For more caregiver support and resources, visit jeanetteyates.com.
If this conversation resonated with you, share it with another caregiver and subscribe for more honest conversations about caregiving, boundaries and feeling good without the guilt.

Chapters
00:00 Grieving someone who is still here
01:52 Trudy’s young-onset Parkinson’s diagnosis
03:31 Why emergency medicine did not prepare Brent
04:55 The sanitized version of caregiving
06:10 Caregiving as a death by a thousand cuts
07:20 Toxic positivity and the reality of Parkinson’s
09:32 Speaking directly to caregivers
11:04 Why Brent created Held Light
13:07 Becoming a better husband and caregiver
15:31 Misinformation and miracle cures
17:57 What caregiving taught Brent about love
19:21 How caregiving affected their sons
22:59 Caregivers do not have to be perfect
24:20 Admitting the darkest caregiver thoughts
25:44 Living in “caregiver purgatory”
27:37 Why perfect caregiving content can be harmful
28:20 Can caregiver burnout be prevented?
29:28 Small ways to manage chronic caregiver stress
31:21 Knowing when to step away
32:12 Respite care, hospice and outside support
35:38 How respite care actually works
37:20 The guilt of leaving a loved one in respite
39:20 Advice for a newly diagnosed family
40:40 Make memories before the disease progresses
42:02 Where to find Held Light

HeldLight website

HeldLight: TikTok &  Instagram & YouTube

Sponsor: Savi Security

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Feeling overwhelmed by caregiving? 

In From Guilt to Good Enough, Jeanette Yates offers a powerful guide for struggling caregivers. Having been a caregiver for her mother since childhood, Jeanette knows firsthand the emotional toll caregiving can take. In this memoir-turned-self-help guide, she shares her healing journey, setting boundaries, and reclaiming her life.

Grab your copy TODAY!

Transcript

SPEAKER_01 0:00

I used to think grief only showed up after the funeral, but I was wrong. I grieved for my mother in pieces for decades while she was still sitting right across the room from me. Grieving someone who is still here is a particular kind of lonely, and you don't get casseroles for that. Today's guest knows that loneliness intimately. Nearly two decades ago, his wife was diagnosed with young onset Parkinson's disease. Brent from Hell Life is a husband, caregiver, and creator who has spent nearly two decades caring for his wife after she was diagnosed with young onset Parkinson's disease. Through honest videos, conversations, and the health life podcasts, he gives voice to the parts of caregiving that are so often left unsaid. The exhaustion, the loneliness, guilt, grief, and resilience that come with loving someone through from a human. While he works full-time in the human space flight industry, his passion is helping caregivers feel seen, understood, and left alive. His mission is simple. Start the conversations that caregivers have been waiting for someone else to start. Welcome to the podcast. Hi, my name is Jeanette Yates, founder of the Self Caregiver. I cared for my own mother for several decades, and now I help caregivers set boundaries and use simple tools that make care and life easier so they can feel good, not guilty. Today's guest knows that loneliness intimately. Nearly two decades ago, his wife was diagnosed with young onset Parkinson's disease. He was a young husband, a brand new father, a paramedic who spent his career saving other people's lives. And then he had to learn how to hold his own family together one hard day at a time. Brent didn't set out to become a caregiving advocate. He set out to be a husband and a father. But somewhere between the hospital hallways, the financial collapse, and the quiet exhaustion nobody warns you about, he started something called Heldlight, a space built to say the things caregivers are usually too ashamed or too tired to say out loud. Welcome to the podcast, Brent.

SPEAKER_00 1:50

Thanks. You made me sound cool.

SPEAKER_01 1:52

All right. So we always start with our guests, especially ones that have been or that are caregivers. We start with their caregiving journey, their personal caregiving journey. So take us back to 2007. Trudy was diagnosed with young onset Parkinson's at 33, right after your youngest son was born. What do you remember about that day?

SPEAKER_00 2:12

It sucked. So you know, her and I met in 06. Um, both of us were divorced. She had one child from a previous marriage. I had zero. And um, and we actually met on match.com. Started dating her about nine, 10 months into the dating scene, before we even got married and had our kids, she she had a little like twitch in her finger. And uh that was equated. We thought at the time, because of her age, that it was maybe from an old car wreck. So a lot of chiropractor things that we went through. But anybody that knows Parkinson's knows that like there's this process, especially through young onset. And then our kid was born Christian, and I want to say within the first year of his birth is when things started to become more obvious. And we eventually got in that first year or so, I think it was in the first year, a diagnosis of Parkinson's disease from the Mayo clinic down in Scott. We were living in Albuquerque at the time, but it was down in Scottsdale, Arizona. The local neurologist in Albuquerque had already called it Parkinson's, but we didn't believe her. So we followed through with the Mayo and got the diagnosis.

SPEAKER_01 3:11

Well, at age 33, you're like, no, that can't be right.

SPEAKER_00 3:13

No, it's it's terrible. You go with young onset Parkinson's nose. Like there's this whole process of rule-outs, like everything from Huntington's disease to MS to in her case, we thought it was some sort of a pinched nerve. And but the thing about Parkinson's is it it will eventually show itself. And it did.

unknown 3:31

Yeah.

SPEAKER_01 3:32

So since you had a professional background in saving other people's lives and taking care of other people and that and and the parameters, you're a special kind of paramedic though, right?

SPEAKER_00 3:42

Yeah, I was uh when I was active duty in the Air Force, I was an Air Force pararescuen, which not many people know. Actually, people today know because those two pilots that ejected in Iran were saved by PJs or picked up by pararescuen flying on different aircraft. And so that's what I did. And I was taught to save lives and aid the injured in a unique, austere environment. But that doesn't prepare you for long-term caregiving.

SPEAKER_01 4:04

So that was my next question is you know, what so even you know, you have this professional experience. Did you have any concept of what caregiving might be like or what you thought caregiving might be like before you knew what it actually was, or did it just hit you like a ton of bricks? It probably did both.

SPEAKER_00 4:21

Yeah. So so in the emergency medicine community, you know, because I've moonlighted a lot over the years in different hospitals. You get a patient, you work them for an hour or two, or sometimes longer, depending on what the issue is. You know, anybody that's been in the ER, sometimes you can wait a while and you're either discharged or you go upstairs. They're in and out. But when you become a caregiver, like that that illness is at home. And prior to that, my only caregiving experience was working in the different hospitals. And, you know, take it, my grandfather, you know, I took care of him a little bit before he passed, but not like this. Emergency medicine and long-term caregiving are completely different animals.

SPEAKER_01 4:55

Yes, totally. So one of the things that you have said, you do say on your channels on TikTok and YouTube and Instagram, wherever you are, you're all over the place, is that you're tired of the sanitized version. And can I get an amen? What does the sanitized version leave out?

SPEAKER_00 5:16

So this is what I'm learning, especially because I started 13 months ago and I've grown quite a few followers in the last 13 months. And I'm on Instagram, Facebook, TikTok, and YouTube. And then I have the podcast is also on Spotify. What I'm learning is the dementia and Alzheimer's caregivers really identify with me.

SPEAKER_01 5:36

Yeah. Well, I think also long-term caregivers have a little bit more, they've gone through that period of that, not that it's ever like sunshine and roses, but you know, when caregiving first starts, like even your wife was diagnosed and you're sad, you're devastated, you're worried, but you know, you still have this sense of, I can do this. This is, you know, I'm her husband or like me, I'm her daughter, or you know, like whatever. You you have this. But then that attitude burns out pretty quickly, and then you still have decades left.

SPEAKER_00 6:10

Yeah, I've said it a couple of times in different platforms. It's the death by a thousand cuts. And then a lot of people like to use the long goodbye. You know, with the way I do things and why I started doing what I'm doing. First of all, let me go back. I started about four years ago. There was a lady I just interviewed two podcasts ago, Heather Kennedy. She used to be a really prominent influencer in the Parkinson's community, and she influenced me to say, hey, you should tell your story. And I did on my personal platform. And I put a video out on YouTube about four years ago on my personal platform. It went a little bit nuts. And then I paused because she warned me, Heather's like, Brent, if you go down this road, you know, you need to tell your story, but know that there's gonna come, there's gonna be haters essentially in consequences. So I put out a pretty harsh video about how screwed up the healthcare system is, and I went after the local congressman in that video, and and then I shut it down because I got real popular real quick. And then three, four years later, I started heldlight. Why? Because you mentioned the sanitized version. What I'm learning, like I said, was the dementia and Alzheimer's folks tend to really understand it. They understand what I'm dealing with, and because they're in that same long-term burnout. But the Parkinson's community, which is what my wife has, I've caught some shit from that community. And by the way, it's mostly the people with the illness that are not happy with what I'm saying. And I get why, you know, especially folks that are young and early to the disease, or even older that are early to the disease, they don't want to hear it. And the reality is, is this disease is progressive, this disease gets ugly towards the end. And I'm in that, there are stages of Parkinson's disease, and my my wife is in those final stages, and it's not pretty. And I I speak what we're really, really going through because there's a lot of folks that put out too much toxic positivity. And I know positivity can be infectious, and we should try to be positive and look at the glass half full, but there is a yin to the yang, and you can't ignore, you can't ignore the dark side of caregiving. If you do, you're not going to do okay.

SPEAKER_01 8:02

Well, and I think you know, the difference between positivity and toxic positivity is reality.

SPEAKER_00 8:09

Yeah.

SPEAKER_01 8:10

You know, toxic positivity is going to avoid the reality of the situation. And you can't address the needs, you can't care for the person if you're not addressing the reality of the situation. And so, you know, I'd wholeheartedly agree. But one thing I did want to say to you is I saw you just interviewed somebody with Parkinson's or they interviewed you.

SPEAKER_00 8:30

Yeah, that's Kathleen. That that's the lady I was telling you about.

SPEAKER_01 8:33

So one of the things that I've, you either said it on the actual TikTok that you posted or I read it in the caption. But this idea of, yeah, what I'm saying might ruffle feathers or it might sound rough to someone with Parkinson's, but I'm not talking to them. I'm talking to their caregiver.

SPEAKER_00 8:50

Yeah.

SPEAKER_01 8:50

And, you know, and I think that's an important distinction too, is, you know, even some of the things that not that if my mom ever saw anything I posted, that I would have been embarrassed. But I also, there are things that I might say on a post that I wouldn't say to her face, right? And that may be different for you, but you know, there's, you know, if I'm talking to another caregiver, that's different in the way I'm going to talk to, you know, or when I'm talking when I was talking to my mom's doctors, I might say things differently than I was talking to her face. But there is this, you know, I loved how you put that. Like I hear that, I receive, you know, that feedback, but also I'm not talking to you. You know, I'm talking to your caregiver, or I'm talking, you know.

SPEAKER_00 9:32

I said, I think there's a short that I put out because I I get feedback from some of the Parkinson's folks, like Esther, one of the girls I do the podcast with when we do the uh Parkinson's podcast. And the it it's harsh to hear, you know, some of the things. Now, I'll say this too. My wife Trudy is one of the people who pushed me to do this. Like, you know, I've been Montel Williams. I was on a TV show with Montel Williams. He said, bro, you need to do this. Heather Kennedy, the lady you're referencing, she used to be a massive Parkinson's influencer. And then she came out of the limelight, she stopped doing it because of the haters. But so I've I've been told for years now, you need to do this. So 13 months ago, I said, Screw it, I'll do it. By the way, you know, of the 50,000 followers across all the platforms, we're talking like a handful of people, you know, and all the other ones, you know, I tell folks that, especially the folks with the illness that get frustrated with what I'm saying, I tell them, go take what I'm doing and show it to your spouse and let them hear these things if they're not already following. And and what that has done is it's I'm seeing a ripple effect. I'll post something and then I'll see another influencer, you know, a week or two or a day or two later repost or do the same thing. And that, and that that's a good thing. It's forcing a conversation that should be had. Otherwise, the spouse is gonna have resentment towards the person that they're caring for towards the end of that disease. And I'm telling you that because I had resentment towards my wife, towards the end of the disease. And if it wasn't for all the therapy and all the things that I've gone through to get my head straight, we probably wouldn't be having this conversation.

SPEAKER_01 11:04

Yeah, yeah. So you mentioned it, and I want you to tell us more about creating held light. So, why did you create Held Light? It's a website, it's a platform, it's your channels, it's a podcast. What is Held Light? Why did you create it? And what do you hope caregivers find there?

SPEAKER_00 11:24

I don't know yet.

SPEAKER_01 11:27

So I, from the outside looking in, you've created a platform where Parkinson's caregivers can feel seen, heard, and not judged.

SPEAKER_00 11:36

I've been told I say the thing out loud that they can't say. I give them a voice. Held Light was a vision for me. I went through a program and I had this vision, and it was, I don't know if I told you this before, but the idea was is I was at a point, it was around 2018, right before COVID. I was at a point in my caregiving journey in my adult life where I was not good. And I talk a lot about the darkness in in some of my videos, and I was in those dark places, and I just remember having a little light at my feet, and that little light was showing me something. I was terrified of the dark. Like I thought I was gonna die, and I was terrified of the dark, and there was this tiny little light, and it was showing me away, and I just knew to okay, follow the light. And as I followed this little light, it got brighter and brighter and brighter, and kind of a long story short, I uh eventually I popped out of these really dark woods into this beautiful open pasture, and the sun was shining. And the moral of my little story and my little vision was that light at my feet, first of all, it was never dark. The sun was always shining, but my mind was clouded. And the light at my feet was friends and families and therapists and co-workers and all those people in our circle that were shining the light for me. They could see I was struggling, but my own mind with my own ego was in the way of seeking help. So they just kind of showed the light. And that was that's where the term held light comes from is we hold the light for each other in the darkness because we're here too. We're in it too, or we've been there, like in your case, we've been there, and I can show you that light out.

SPEAKER_01 13:07

Yeah, I remember having a epiphany that, like a little bit of time after mom passed away, I mean, it still feels like it was just yesterday. But, you know, I realized I'm not gonna say my caregiving journey is over because I still have a father that's alive and in-laws, you know, I may be taking care of my husband. So, like, I, you know, this idea that like it's ended is still is not even relevant for me, but just or not not even believable for me because it's you always have another opportunity. And that can be intimidating when you're like in it and you're like, when is this gonna be over? Sometimes, which we're gonna talk a little bit about, the tough stuff.

SPEAKER_00 13:45

I hope I never have to do this again, but uh, I'm better prepared now than I was, you know, three years ago, even a year ago, since I started doing this headlight stuff. I've learned so much from so many. By the way, I'm about halfway done with your book. So, because I like I'm I'm big into reading books. The book I've been harping on a lot lately is Emma Heming Willis's book, the phenomenal book. If you haven't read it, it's worth reading. And so because I started this thing, I'm like, all right, if I'm gonna say things on the internet, I probably should know what I'm talking about, or at least read up on the truth data. And then I listen to your folks, like I listen to you, you know, all the other folks that are out there, those other influencer types. I watch everybody else's podcasts and it's made me accountable. I've become, my wife's even said it, I've become a better husband, a better caregiver. My son has noticed a difference in me because now I have to be this model.

SPEAKER_01 14:35

Right. Well, and I think too, and this is a sidetrack from the notes I have for this, but I will say, like, when you decide to just share your story and share your personal experience, right? And that you don't have to research that, right? You're just sharing your personal experience. But at some point, if you're going to start giving some sort of advice or recommendations, you have to do some research. You can't just go out there just spouting, you know, just because it's the way you did it isn't the way everybody should do it, right?

SPEAKER_00 15:02

I know that you hit this a lot on your platform. There is a lot of misinformation out there. And I thank you for what you're doing to kind of keep that shit in check.

SPEAKER_01 15:10

Well, and it's just, you know, like one of the things that really gets under my craw. Uh I don't know. Is that that might be an old-timey saying? I don't know. My grandma used to say it. But, you know, the caregivers I know who are caregiving for people with dementia don't say this. But there's a lot of things out there that are that are like, you can prevent dementia if you do XYZ.

SPEAKER_00 15:30

Oh, God, yeah.

SPEAKER_01 15:31

And I'm like, you can reduce the risk or you can improve brain function. You cannot prevent dementia.

SPEAKER_00 15:39

I have a video that on YouTube alone, I think this morning it broke 8 million views. And it's a video of my wife with really bad dyskinesia. And I have her permission to make that video. Uh, the park doc, one of the doctors that I bring on sometimes, she's a movement disorder specialist. She's been encouraging me. She's like, show that.

SPEAKER_01 15:58

Yeah, I saw it. It was so moving. And of course, I love, and I'm like, of course, he had to put that in there because he was going to get 40 million comments about how dare you post that. So you have to say, My wife gave me permission to do this. This is part of her thing, you know.

SPEAKER_00 16:12

Well, what's interesting is if you go through the comments, how many people are advertising miracle cures for what she has? And my DMs blew up. And by the way, some of uh I've listened to some of those comments. The number one most overwhelming comment was THC medical marijuana CBD stuff. We'd been experimenting and have been experimenting with a CBD oil proprietary blend that we're getting from some. I can't talk too much about it yet, but there's a gentleman who's got this proprietary blend, and he's he's allowed us to, we're testing it. It seems to be helping, but we were really reluctant to go the THC route. And I know you're here in Florida as well. And we got our card, we had a doctor came to the house, and we're seeing some improvement with that. So for the gazillion comments on it, I listened to that and it seems to be helping. But the ones that blow my mind are like people with miracle cures or devices and things, and I'm like, just go away.

SPEAKER_01 17:08

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SPEAKER_00 17:57

So when we say in sickness and health, Trudy's my second wife. When I got married the first time and I said those vows, I didn't mean it because I truly didn't love her. And hopefully she doesn't see this.

SPEAKER_01 18:09

I'm sure she knows.

SPEAKER_00 18:11

She knows. I mean, I actually I I I did love her, but it wasn't the kind of love, you know. So so we we were we loved each other, we weren't in love, if that makes sense. So when you when you truly love somebody, when you're when you're truly committed to somebody, when something like this hits, you know, that's where you learn that true core value in sickness and health. And because there are people out there, I have one one lady that I speak with on occasion who has an illness and her husband left her. He's like, I'm I'm not dealing with this, and bailed. Yeah. So I'm learning, especially from a lot of the comments I get on some of those videos that I post of of my wife, is just how many spouses don't stick around. So to answer your question, if you decide that you're gonna get married and you're gonna marry somebody, you should consider what in sickness and health really means. And that's what it's taught me. It's taught me what true commitment actually is. I didn't think I could be able to handle this. You know, and if you had asked me on the day of our wedding, hey, just so you know, in a couple of years, this is what's gonna happen, and 20 years from now, you know, would I still stick around? And I think the answer would be, yeah, I sure would. You know.

SPEAKER_01 21:13

So you you kind of mentioned this already, but I'm gonna let you dive in a little deeper. Has it changed how you show love to your sons? You mentioned that they said you changed, so that's why I'm I'm wondering.

SPEAKER_00 21:24

Yeah, so there's two different stories there. Um, I'm actually writing a memoir, and each of my boys have their own chapter, and and Matteo's chapter, my oldest son, is very different looking than Christian's chapter, my younger son. Why? Because my older son knew a mother. He was five when we got married, and and he was in probably the tenth grade as things started to really get bad. So so he had most of his childhood with a relatively healthy mother that was very present. Whereas Christian was diagnosed almost within the first year of his birth, and he was in elementary school when things really started, you know, to so here's this kid who's in adolescence and then all through senior high school. Now he's local college, but they have two different views. But what I think, when I talk to them and when I was doing my research on the book, I talked to both of them, and your actions speak louder than your words, you know. So so they they see the dedication that I have for her and they they understand, I think is young men. I think if anything, whether I actually taught it to them or they learned it from observing, they've learned what dedication to a spouse really is. And I think that's kind of where I'm at with that one on the boys. There's a lot of things I like Mateo, I taught how to drive and fish and and Christian surfing, all these other things. But I think at the end of the day, the men that they are becoming, I'm hoping that the way that they see how I've treated their mother and loved on their mother, and they've seen the bad stuff too, but they also see how I they also see how I stay dedicated to her and how I fight for her and and her needs and their needs. And I think that's a very powerful lesson for them.

SPEAKER_01 22:56

I don't know about you, but I know that when I started, I mean you know, much to my children's chagrin, they would just prefer I'm off social media because they're not really on it either. But they, you know, they have their their accounts. And when I started really talking about caring for my mom, my mom was sharing her own journey on Facebook. On Facebook, of course, as long as she could. And so I decided to share my own, right? I knew that my kids were gonna call me on my BS.

SPEAKER_00 23:23

Yeah, my son does it all the time, you know.

SPEAKER_01 23:25

So I knew that if if I was gonna go on there and say, like, caregiving journey, hashtag la la la, I was gonna have to, you know, I could talk about those beautiful moments, but I was also gonna have to talk about the crappy ones too. Or they were gonna be like, Mom, you look like you're having, you know, like it's sunshine and roses on your Instagram, but you come home and you cry every night.

SPEAKER_00 23:46

You know, like I knew they would be like, What my my son Christian is one of the ones who was pretty. Serious about dad, you should get on. He he's the reason why the first held light was TikTok, and he's like, Dad, get on TikTok. I'm like, Why? Because he hasn't he had a TikTok account that did really well. It was he was a fat kid that got in shape and he had millions of views and tens of thousands of followers, and he's since stopped doing it. But he was like, Dad, tell your story. You know, I saw Montel Williams, Kathleen Kiddo, or or a Heather Kennedy. She goes by Kathleen Kiddo, and I had my son and then Trudy, my wife. All those are four people that are like, You should do this. And my my youngest son, Christian, is also really good at analytics. He's been helping me with some of this. So and it and it's weird because it's kind of bonded us a little bit. There's some things that we just, you know, he's 19 now, he'll be turning 20 soon. He's in college, and this is just like a new thing that a lot like, hey buddy, what'd you think of that last video? He he's also he also sanity checks a few of my things, like, hey, buddy, what do you like? What do you think of this when he's like, Don't post that? Or yes, you need to, you need to do that.

SPEAKER_01 24:51

So yeah, that's good to have a little gut check. So you and I both say this, but you talk about how caregivers don't have to be perfect. Of course, none of us are, so not only do we not have to be, we can't. But that guilt, that loneliness, the frustration, the grief, all of that, sometimes we think that is what makes us a bad caregiver. But you say that none of that is what none of that makes you a bad care caregiver. That's just making you human. Can you talk a little bit more about that imperfect caregiver piece?

SPEAKER_00 25:19

Yeah, we're perfectly imperfect. I have a hard time. A lot of the good caregivers are hard on themselves when they get to the bad spot, the dark spot. And there are days where I feel like a turd. You know, I've said mean things to her, you know. I've no, there's not some days. Every day I'm a turd at some point in that day, you know. So there's not some days, it's like what hour in the day I was a turd. So, but and and and that again, that's that balance that, you know, not to get all philosophical, but you can't have the darkness without the light. Like, we have to accept. I'm a big fan of Youngian theory, shadow work. For anybody that doesn't know what it is, look it up. Uh, Carl Jung is like that shadow self. There's a side of us that that thinks certain things, and and and that's just human, that's just normal. And and you know, I've said it, I'm not afraid to say it. Like, there have been times where I have literally looked at my wife in pure frustration and I've said, like, I just wish you would die already so I can get on my life. And I feel like the biggest piece of crap shit, whatever, when that's happened, you know, it doesn't happen like it used to, but you know, go back three or four years ago, I was not in a good place. And with good therapy and coaches and the stuff that I've been working on and books, it's it's it's helping me. So it's okay. It's okay to feel guilty, it's okay to feel broken, it's okay to feel those feelings. You know, what's not okay is to pretend that shit doesn't exist and bottle that up because that's what I did and it broke me.

SPEAKER_01 26:48

Well, and I think, you know, when you can't help what you think, but you can help you what you do, right? And so, you know, if you're spiraling, if you can't, if it's getting unmanageable, that's when you go to there, you know, that's when you get therapy or do, you know, there's a plenty of things out there.

SPEAKER_00 27:04

Walk away.

SPEAKER_01 27:04

That's what I yeah, like walk away. I used to, I remember I used to, I remember so my mom went on hospice in September of 24 and lived until June of 2025. And there were times, and she was bedridden for two years before that, where she wasn't even getting out of bed, she was sleeping most of the time anyway. But I remember thinking, how long like we are in the in-between, like she's not living and she's not gone, you know, in our faith to heaven, you know.

SPEAKER_00 27:37

That's care, that's caregiver purgatory.

SPEAKER_01 27:39

She's stuck here, and I'm stuck, we're both stuck. And I I would think that, and luckily, I had already been in therapy for years, so I knew to like talk about that. But that is a hard thing to to think about and then give yourself grace for. And then to the point about you know, being a turd, I do just want to say, and I have made this very clear as many times as I possibly can, but sometimes people are like, not you, Jeanette. No.

SPEAKER_00 28:06

I hate to break it to you, people. Jeanette's not perfect.

SPEAKER_01 28:09

But you know, like I would I did a caring bridge for my mom after she stopped being able to share, I would do that and post the you know updates for about her and how she was doing. And then I would always, you know, share something. And then people would comment, oh Jeanette, you know, you are such a saint. You're an angel sent from God and da-da-da-da-da. Which, you know, I, you know, I'm a person of faith, so I appreciated those words. But at the same time, I felt compelled to go in the comments and go, I can assure you, I'm not a saint. And then for people who, you know, I'd never post this like in a comment, but if people one-on-one, like, you know, people that knew her and knew me that would say that to my face and just be like, You're a saint. You're an absolute saint. I'd be like, Well, let me tell you about the time both my mom and I were cussing each other out. Let me tell you about the time she said, if you walk out that door, don't you ever come back? And I said, Promise. And I turned around and I walked out the door and I slammed it, you know. And then of course, you know, I went back eventually.

SPEAKER_00 29:12

But you know, I think every young kid has had that moment.

SPEAKER_01 29:15

Yeah, like, you know, but if you don't say that to on a podcast, or you know, if you don't share that as part of your journey, people think, oh, there's something wrong with me for wanting to get in my car and never come back, just drive till the gas runs out.

SPEAKER_00 29:29

That's exactly it. There are a lot of call them influencers, call them what you will, people that are just showing how perfect life is and how they're just making it work. And I'm so blessed and happy. And and that's not real. That's not reality. And there are some folks that that can get away with that and are truly that way, but they're not in the trenches like like you and I have been for years and years and years. You know, if I only had to do this for a few months to a year, I think I could be that person that said that could have that kind of a positive look at how blessed I am to do this. But when when it goes on and on and on, it it it, you know, death by a thousand cuts, you start to bleed.

SPEAKER_01 30:05

Well, and I struggle too with like, unless you're gonna tell me how to sign up for a Medicare plan or Medicaid in my state or something that's very specific, set up power of attorney. And maybe that's even different in different states. I don't even know. But like, so unless you have a specific thing that has step one, step two, step three, I have a really big problem with hearing, like, and I will I also will say, I tried this. I tried to be like, here's how to stop burnout, or here's how to. And it the truth is, what works for me, and first of all, I don't think you can stop burnout. I think you can you can slow it down, you can slow it down, you can make it last less longer, but it's gonna, especially for long-term caregivers, it's gonna happen. You just need to know how to manage it. So that those things, but like I have a really like speaking of getting under my craw, like I said earlier, that's another thing that I really struggle with. Well, like I said, there are some things that actually have steps that are appropriate. Like you shared that video of the steps that you take to help your wife when she's experiencing those dyskinesia. You know, you could in theory say, step one is I assess the situation, step two, I do, you know, adjust this. You know, you could do that. But even, you know, like there's things like that. But most of the time, we're problem solvers that are solving a different problem every single day.

SPEAKER_00 31:21

For me, when it comes to the caregiver burnout and caregiver syndrome is a real thing. And anybody that does not know what that is, Google it. You'll see it, it's it's it's a I I have it, I'm dealing with it, you know. Um, and it's it's a medical kind of side effects of chronic stress and sleep deprivation and high cortisol levels, you know. But I've learned through you know, the last couple of years, what is the best medicine for anything? Diet and exercise. And I'm not saying diet like restrict, like eat healthy. I said it the other day, I forget who it was. And what I said to her was happy people are healthy and healthy people are happy, you know. And if we if we uh you know, I just I'm telling you this, and I just ate a pizza before we started, but so it eating healthy is one thing that helps mitigate the caregiver burnout and stress, sleep if you can get it, and exercise. But the other thing, and those are easier said than done. But you know what is actually easy to do that I've gotten better at is learning to calm down and ground. You know, I go out, I go outside, you know, uh put my bare feet in the grass. The outdoors is a very powerful healing thing. God created this big, beautiful blue marble in the middle of this universe, and we're meant to be outside and see the sun and let let let nature heal us. And a lot of caregivers are stuck inside all day and they just forget to go outside and let the sun hit them, you know. So there's a lot of things that you can do to help mitigate the burnout. And what I'm learning and what I what I mostly talk about is the little micro things that you can do that can actually make a difference. Like last night she was having a hard time. I could feel myself boiling over. I said, babe, I love you, but I have to step away. And so I just walked outside, I stared at the moon or the stars for a little bit, calmed down, took my 10 deep slow breaths, came back in, and it was the reset that I needed to get her to bed. Because if I'd have stayed in the room with her, it would have been a very different outcome.

SPEAKER_01 33:14

Neither one of y'all would have gotten to sleep, right? And it's like, today's sponsor is Savvy Security. You're probably looking out for two generations right now: your parents on one side and your kids with digital devices on the other. And both of them are getting scam calls and texts that didn't exist five years ago. Savvy was built exactly for households like yours. One family plan covers everyone. Parents, teens, and you. Savvy is real-time protection against AI-powered scams before they reach the people you love. You can have greater peace of mind for just $7.99 a month. That's $7.99 a month for coverage of unlimited family members. Savvy is live in the App Store and Google Play. Details at savvy security.com. That's S-A-B-I-security.com. Well, so we're we're talking about these micro moments, these little things, these, you know, use what you have in terms of nature outside, right? Wherever you are, even if it's, you know, concrete jungle, there's a sky, right? Even if it's not as clear as others. But you also talk about some other things that actually help people get through the stuff that's the most draining physically, emotionally, the hardest things. You talk about respite care therapy and hospice. So we do have a little bit of time to chat about hospice if you want to, but just share with me a little bit more about how respite care works in your situation. And we we both talked about therapy a little bit. So let's start with respite care.

SPEAKER_00 34:48

Yeah, so a respite for us. So I'm a federal employee, so I still work for the government because I'm here in Florida with you. Um I have Florida Federal Blue, Blue Cross Blue Shield, and I'm learning just how good I got it. Like that's another thing that's another thing this platform has taught me is to use the word blessed. I am actually very blessed with a really good health care plan. But you know, it I I've served my country to earn that, you know? And so she's on hospice right now, but there's a difference between hospice end of life and hospice palliative care. And right now we're walking a tightrope between end of life and palliative care. My insurance, Blue Cross Blue Shields, is paying for her to be on hospice. And that covers nurses that come to the house once a week, that covers all the medications. And the doctor comes quarterly, and the PA comes, I believe, once a month and does like provider checkups. She also has a with that service a CNA, which I can't say enough about how good they are to help to help her with bathing and some of the things around the house. And that's covered through my insurance plan. And then, and that's under hospice. Um, but I I won a Medicaid case through the state of Florida by lawyering up with an elder care lawyer. And through that process, we were able to get a home health aid, not Medicare, because she's not old enough and didn't pay enough into the system, but she got Medicaid through the state of Florida that allows us to have a caregiver in the home Monday through Friday so that I could go to work. And, you know, four years ago or so before we started all that, I was bankrupt. I was struggling, and I was in the darkest point of this whole thing. And I didn't know how to navigate any of these systems. And through a good social worker, we we worked through it. So the hospice allows her to get in-home health care without me having to take her to uh appointments all the time. Uh Medicaid covers the home health aid. And without those, I would be bankrupt. Without those, I would not be able to work. I'd have to retire early, and I cannot live off of my retirement check alone.

SPEAKER_01 36:44

Yeah, and like you say, it is so and even Medicaid, which is a federal program but distributed by the states, it's like, you know, it's it's different. But there are area councils on aging in most states. You know, in my particular Northeast Florida area is called Elder Source. So you can go to your Googles or your wherever and look for that for those of you listening or watching and want to learn more about resources that are out there for respite for you, for the, you know, discussing the difference between hospice and palliative care and when it's appropriate. You know, calling a hospice or palliative care facility or place or program, you're not signing up for it. Like you have to sign a lot of paperwork, you're not going to accidentally put your loved one on hospice.

SPEAKER_00 37:31

So that's literally what I did. I called a local nursing home because I did, I was at my wit's end and I knew that social workers had all the answers. You just had to find the right one. And that's how I got dialed in. And and before I forget, because you had mentioned respite as well, is like, so respite is is literally that it just gives you a break. There are times I typically use respite when I have to travel for my job because I do on occasion have to travel, not as much as I used to. Luckily, I'm I'm so lucky that I have a commander because I still serve in a in a different capacity that's supportive. But I have to put her in a facility. Now, here's the thing the respite that we put her in is a skilled nursing facility. But she's in such bad shape now where somebody has to be with her at all times. And so the skilled nursing facility, they don't have a one-on-one capability.

SPEAKER_01 38:20

It's 24-7, but it's not 24-7 at her bedside.

SPEAKER_00 38:23

Right. It's like one nurse to four or five patients. And she needs somebody close at all times because she's a fall risk and she has all the the video that went viral is is happens a lot. And so that being said, I can put her in this house that's a respite house that the insurance, my insurance covers that. And what they'll do is they'll put somebody there to be with her the whole time. And I'm I'm authorized per my insurance plan 30 days a year for that. So I can take 30 days a year, I can do it in one-day increments, five day increments, or I could even do it up to 30 days straight. But not all healthcare plans will do it that way. Most healthcare plans will only do it in five-day increments, five nights. The other way I get respite is through Medicaid. And that is, I forget the number of hours, but I'll just say X number of hours per year. But that respite is where I have a home health aid that works Monday through Friday. I can get X number of additional hours so that like I come back from a work trip, I was smoked, and the social workers like, I can I can give you a Saturday and Sunday home health aid if you want. And so we did. And so those are here's the catch to respite. The first time I used it, I felt like I abandoned her. I felt like I dropped her off at the pound and abandoned her. The guilt that I felt leaving her there, the crying from before I even got out of the facility and into the car, I was already balling. And she felt abandoned and scared and didn't like it. But I gotta tell you, you have to take advantage of it if you've got it in your plan because those breaks are must-haves. You know, those those times that I use it. I posted a video a while back where I took a week off and went to a veterans type retreat here in Florida. And it was funny the comments that I got on the videos after like day three, I posted this video of me, and everybody's like, Wow, you look so much better. And just three days. Yeah, yeah. So you so she it it still breaks my heart. It still scares her to be left, but she sees what it does for me when I come back. By the way, I posted a video of me picking her up after all of that. I I miss her after a few days. You know, I start to miss her, and so that you know, the the what's it, the heart, the distance makes the heart grow fonder kind of thing.

SPEAKER_01 40:30

So absence makes the heart grow growder.

SPEAKER_00 40:32

There it is. What she said.

SPEAKER_01 40:33

Another thing I just want to mention for those of you who are taking care of someone with dementia, there is a new program through Medicare called the Guide Program that offers respite care for caregivers. Of course, there's a lot of rules attached to it. So go look it up. You can just Google Guide, Medicare, Dementia, and you'll see it. It's a brand new program, they're pushing it out, so it's it's gonna show up. But that's been something that has already been proven to be very helpful to caregivers.

SPEAKER_00 41:00

Is that a nationwide program or a Florida program?

SPEAKER_01 41:02

No, I think it is nationwide. I will put that in the show notes. In addition to all this other stuff we've talked about, we've we've you've dropped so many resources. So as we wrap up today, though, I want to give you a chance. If you were sitting down with a brand new caregiver today, and let's say it's a brand new caregiver that's just like you, their spouse, their husband, or their wife, and their loved one has just been diagnosed with an early onset disease like Parkinson's or Alzheimer's. What would you tell them?

SPEAKER_00 41:31

I I had that experience where I was the young guy new to this in Albuquerque, New Mexico. We went to a Parkinson's whatever thing, and I talked to this guy. I go, hey, what advice do you have? And he was pretty far down the road. You know what he told me? He said, run away. He's like, he's like, if you don't have kids, man, just just he goes, I would never do that. He gave me that that advice.

SPEAKER_01 41:53

So not that.

SPEAKER_00 41:55

Well, that's what I'm saying is so so don't be that guy. Well, here's what the reason why I bring this up is is that was the first indication of just how hard this process is gonna be. And I didn't think much of it. I thought he was a dirtbag for saying it, but you know, here I am 20 years later, and I'm like, I understand why he felt that way. But my advice to anybody that that would be just like me, and and statistically speaking, it's not that many people. There's a million, a little over a million people in the United States with uh Parkinsons, and I forget the numbers that have young onset Parkinson's, but it's it's not that many. And so if you truly love someone, you know, you're you you're gonna stay dedicated to them. And and my advice to them is do everything now, do all the things that you always wanted to do together now, because as the disease progresses, you know, you can't just like I can't just get her in the car right now and take her to Publix to get a pub sub, right? Like that's an ordeal to do, you know. And five, six, seven years ago, you know, I could just, hey, you want to let's go to the beach for the weekend or let's get a you know, jump on a plane and fly up to New York City or something. Like there's there's a lot of things in the bucket list that you want to try to do now. And if you don't have the finances or the means or the modes to do those kinds of bucket list items, at least do things together now. Make memories now, be there for your children. If you have children in the mix, you know, they're feeling it too, and and get involved. And then the last thing I'll say in my little ramble here is therapy early, early. Communicate, communicate as a family, you, your spouse, and your kids, communicate early, communicate often, and look into getting therapy as soon as possible to help you navigate this process. And and I will say one last thing. You're gonna be okay. Like if you if you're gonna, it's it's not the end of the world, but you can make it worse than it needs to be. And it doesn't have to be that bad if you if you do all the things that we've kind of talked about here.

SPEAKER_01 43:55

Yeah. Well, Brent, thank you so much for joining me. It's been a pleasure to have this conversation with you. Where can people find Heldlight and how can they support the work you're doing? I'll of course put everything in the show notes, but let them know.

SPEAKER_00 44:08

Yeah, so if you just Google search held light, H E L D L I G H T, I'm on Facebook, Instagram, YouTube, um, TikTok, and I have a Heldlight podcast on Spotify as well. YouTube is where my podcast and shorts are. And as far as support, I'm not monetizing anything right now. I'm not selling anything right now. Like, yeah, I mean, I'm making a little bit of money off of Facebook. Like, so many views will give me a little bit of money here, but I'm not, I don't know what this is yet. I have people that want to do and collaborate and do things, and I'm like, uh, that feels like a sellout. I don't want to do that. Like, I just want to, I'm sharing a story.

SPEAKER_01 44:43

So but also for any of our friends that are listening to this that are caregiver sharing their caregiver journey online. If you are selling lotions, knock yourselves out. We're we're excited. We do what you need to do to support you and your family. Uh, we no, no shade. Um, on if you're if you're monetizing through that TikTok shop, we know, we get it, we understand. But find Brent at Heldlight. You can just at Heldlight anywhere you're gonna find him. And of course, you can check out the show notes to get all the links, books, resources, people he talked about. I'll even link the stuff about the guide program. Thank you so much, Brent.

SPEAKER_00 45:20

Yeah, no problem.

SPEAKER_01 45:21

If this conversation resonated with you, please share it with a caregiver in your life. And if you haven't already, subscribe to the channel so you do not miss an episode. You can find more resources at jeanetteyates.com and check out the show notes. Until next time, feel good, not guilty.