The Story of Brent and Trudie
Brent
& Trudie
More than 53 million Americans are providing unpaid care to an adult or child — and spouses make up one of the largest and least-talked-about groups. Today we sit with Brent, a pararescue veteran, paramedic, and founder of HeldLight, who has spent nearly two decades doing the hardest mission of his life inside his own home.
"Hope alone is not a course of action. Fear and desperation don't always produce clear thinking."
In the caregiving world, we often default to a "sanitized" version of our lives when people ask how we're doing. Can you describe a specific moment when you told someone you were "handling it," while everything behind your front door was actually unraveling?
Every day I go to work and act like everything's fine at home. Even now, even with HeldLight and people knowing more of the story, I still do it. I'll say, "Yeah, we're good," or "I'm handling it." But I'm not. Most days I'm exhausted, I'm lonely, and if I'm being honest, I feel pretty broken inside.
You've been open about the reality of bankruptcy and foreclosure. For many, the financial weight of caregiving is a silent secondary disease. How has the cost — not just in dollars, but in the loss of your "planned" future — changed the way you view security?
Caregiving changed what security means for me. I downsized my life. Smaller house, older house, cheaper mortgage. Not what I pictured for myself, but it's what I can manage. Same thing with my career. I've passed on opportunities that paid more or that I would've enjoyed more because they required travel. I can't do that anymore. So now security isn't about climbing or making more money. It's simple. Can I keep her safe at home? Can I keep things stable? That's what matters now.
Society expects caregivers to lead with endless patience, but the reality often includes deep resentment or even anger. When did you first realize that feeling these "ugly" emotions didn't make you a bad person, but a human one?
I figured this out in therapy, around 2019, and then more through internal family systems work. I used to think anger and resentment meant I was failing as a husband or caregiver. Now I know it just means I'm human. Those feelings show up. You don't ignore them, but you don't let them take over either. You can sit with them without thinking you're a bad person. That was a big shift for me.
I used to think anger and resentment meant I was failing as a husband or caregiver. Now I know it just means I'm human.
— Brent, HeldLightWhen a partner becomes a patient, the husband/wife dynamic undergoes a painful metamorphosis. How have you navigated the grief of losing a traditional partnership while trying to maintain the soul of your marriage?
For me, the hardest part is the loss of sex. She was diagnosed in her 30s. We were young. Now we're in our early 50s, and that part of our relationship is gone. There's still love. We hug, we hold hands, we have moments. But there's no physical relationship anymore. And that wears on you. Some people won't like hearing that, but it's real. That kind of intimacy matters, and when it's gone, you feel it. You grieve it.
You've said that "hope alone is not a course of action" and spoken about the "miracle" promises. How do you now distinguish between healthy, grounded hope and the desperate kind that leads to burnout and bad decisions?
Hope by itself isn't a plan. At some point I had to stop thinking a cure was coming or that something big was going to change everything. That's not where we are anymore. So now hope looks different. Did she have a good day? Did she sleep? Did she eat? Did we get her moving a little? That's what I focus on now. Anything beyond that starts turning into false hope, and that's where you burn out.
Did she have a good day? Did she sleep? Did she eat? Did we get her moving a little? That's what I focus on now. Anything beyond that starts turning into false hope, and that's where you burn out.
— Brent, HeldLightRaising children while managing an advanced disease is a delicate balancing act. How have you talked to your children about the reality of the illness without stripping away their sense of childhood safety?
This is something I got wrong. We didn't talk about her illness enough, especially with my youngest son. It became this unspoken thing in the house. He was in junior high when things got worse, and we didn't include him in what was really going on. That led him to a dark place. Cutting. Suicidal thoughts. He ended up getting Baker Acted. That was the wake-up call. We had to start being honest and bringing him into the conversation.
Trying to protect kids by staying quiet doesn't work. They already know something is wrong. My oldest had a different experience because of his age, but with my youngest, we learned the hard way.
As someone with a background in high-stakes rescue and professional crisis management, how does the "long, slow mission" of home caregiving compare to your professional life? What did your training not prepare you for?
My background is crisis response. Something bad happens, you execute a plan, you adjust, and you move on. Caregiving isn't like that. It's slow. It's constant. You don't notice how much things have changed until you look back and realize how much worse things are. That's the part that messes with you.
The military taught me how to stay calm in chaos. That helped. But it didn't prepare me for this kind of long, slow grind. This feels more like death by a thousand cuts.
Caregiving isn't just mental — it's physical. From sleep disruption to constant vigilance, how has your own body reacted to years of chronic stress, and what does "recovery" look like for you today?
Physically, it's taken a hit. When I met my wife, I was in great shape. Now I'm pushing 300 pounds. I don't work out like I should. I stress eat. I used to drink a lot to cope. I've been sober for three years now, but the eating is still there. My labs aren't great. My back hurts. If I break it down, my mind is in a better place because of therapy. My spirit is improving, but I still struggle with the "why." My body is where I'm out of alignment.
My mind is in a better place because of therapy. My spirit is improving. My body is where I'm out of alignment.
— Brent, HeldLightWe often look for someone who has "figured it out." Since you've rejected that label, what is the most important thing you've learned by not having it all figured out?
I'm not an expert on Parkinson's. There are people way more educated than me. I used to read everything and go to conferences, but all it did was show me where this disease goes. So I stopped chasing that and focused on what actually works for her day to day.
And with caregiving in general, no book or expert can fully prepare you for it. I've been wrong before. I've shared things that I later realized weren't accurate. What I share now is just real life. What's working, what's not, and what it actually looks like.
Looking back at the person you were on day one of this diagnosis — before the bankruptcy, the burnout, and the hard-won wisdom — what is one piece of advice you would give to a new caregiver just starting their journey?
Take care of yourself early. The best way to stay in shape, mentally, physically, and financially, is to not let yourself fall apart in the first place. Don't be afraid to be a little selfish. If you're not okay, you can't take care of someone else. And don't chase miracle cures. If it sounds too good to be true, it probably is. Keep your mind, body, and spirit in check, and don't ignore your finances. That's the foundation.
Air Force Pararescue veteran and nationally registered paramedic. Works in human spaceflight supporting medical readiness for astronaut rescue and recovery missions. Since 2007, primary caregiver for his wife Trudie, diagnosed with young-onset Parkinson's disease at age 33.
Brent created HeldLight because he was tired of the sanitized version of caregiving — the pressure to be endlessly grateful, the silence around resentment, the expectation that love cancels out exhaustion. It doesn't.
He has committed to individual therapy, veteran group programs, licensed mental health counseling, and coaching. Three years sober and still in the work.
