Holding Life Together

Trisha Ludwig’s son, Holden, sustained a traumatic brain injury in a car crash five years ago. Just days after he graduated high school, Holden’s car was T-boned by another car driven by a young, distracted driver. After six weeks in a hospital near his home, he transferred to Shepherd’s Disorders of Consciousness Program. Two months later, he emerged from a minimally conscious state and continued therapy in Shepherd’s Brain Injury Rehabilitation Program, followed by Shepherd Pathways. While Trisha is still in the middle of what caregivers remind each other is a marathon, not a sprint, five years of caregiving have allowed her some perspective that other caregivers may find helpful.

Trisha and her family live northeast of Atlanta in Suwanee, Georgia. She’s a mom of four, and before Holden’s injury, she worked in real estate staging homes for sale. She jokingly says she goes by “superhero, caregiver, and mother of four,” but to observers, the description sounds spot on. We asked her about the challenges and rewards of caregiving and how she takes care of herself.

On pacing yourself

That constant thing you hear — “It's a marathon, not a sprint” — that used to make me so mad. It really did — because I am not a runner. I don't like the long haul. I thought, “This is not my jam.” But the saying is true. And it is more apparent as time goes on, you're like, “Oh, okay, we're not done yet.” I mean, you'll never be done. We still have big decisions. We're still going to three or four appointments a week. We still have to do follow-up care. Our son is still having new ailments that are TBI-related, five years later, that we didn't deal with before. You do what you can, about what you can, and that's the best you can do.

On doing it all (you can’t!)

We would spend three hours in the car each day just getting down to Shepherd and back to our other kids. We made that drive every day because it was important to me to be home for my other children. You know that always makes me cry. I think people quickly pass off the impact a catastrophic injury has on people who are home, and that's not talked about often. They may not be spending their time at the hospital, but we have seen this impact on our younger kids over the years. There are a lot of things — balls were dropped, and I think that's important as a caregiver, too — you have to give yourself grace because you can't do it all. You just can't. And when I say our community rallied around us while Holden was in Shepherd — we couldn't have done it without the support of other people. It was truly amazing.

On grief

I think it is important to allow yourself to grieve what was lost. And I'm still learning this lesson. Grief doesn't have to be someone dying. It can be anything. It can be the ideal you had in your head of what was to be. And for my husband and me, that was — and still is — our biggest thing. It overcomes me still to this day when certain things happen or come up — this grief that you always have with you. But allowing yourself to grieve what was — and then also accepting this new piece of (your loved one) Holden that's unfamiliar, that you don't know — there are a lot of questions, and it's scary. And you can be so grateful for how far you’ve come, and you can also miss that old Holden at the same time. Both of these feelings are okay.

On peer support

I'm a tough cookie by nature, a very independent woman, and I'm going to be honest: I was one of those people who said, “No, thank you. I don't want to be in this club.” For the first couple of months at Shepherd, I wasn't in denial as much as I think I just didn't want to be in that club quite yet. I was trying to live in the moment, and I didn't want my worries to take me too far away because that happens really fast, too — when you're in a situation like that, there's so much you can get lost in, and I think it's essential to keep yourself really present. Now I can see I just wasn't ready. But it turns out, the most important thing is having people that have been there before because you just don't know until you know. So, for us, that resource was invaluable. I still talk to all those ladies (from my peer support group). We're still friends. And I think people talking about it and being vulnerable is really important. There aren’t enough caregivers willing to share the real, authentic parts. So, connecting through all those avenues is important. Connection is key.

On learning everything you can — and then being flexible

Brain injury is so fluid, and it's always changing. It's kind of funny because you might be trained on one thing, and the next day, your loved one might emerge, and you don't even need the thing they just trained you on. So, I think being flexible is super important in this whole journey. I remember when they delivered the hospital bed to my dining room. These are not plans you’d made or things you'd visualized. And it's scary. It's a bunch of you being flexible, being patient with your person and yourself, just learning as you go, and giving yourself grace.

On self-care

I think as parents, we don't tell ourselves enough, ‘It's okay to rest. It's okay to give yourself space.’ Like that old saying, ‘You can't pour from an empty cup,’ right? If I’m completely drained, I know that Holden's not getting the best of me. He’s not getting the best care if I'm not taking care of myself. I'm a nature girl and a connector. So, even a 10-minute walk is something that gives me life back.

On decision fatigue

My husband and I talk about decision fatigue a lot. It comes up almost daily because things change. Maybe abilities change. What the patient is capable of can change, along with what they want to do and what motivates them. So, then your decisions on what to do next change, and that is hard.

When we get to the point where we don't know what to do next, I think space is our best friend. Just taking a moment, whatever that looks like for you — being outside in nature, exercising, breathing, all those things. You need space from the situation to be like, “Oh, okay, that's what I should do next.” My toolbox also includes tagging my husband in and seeing what other moms who are caregivers think –  those kinds of things.

On connecting with others

We're big on adaptive activities and sports. That's also how we formed relationships with other caregivers. We will try anything and do anything because that is a really great avenue for meeting people. We learn something new every time we go — whatever it is — a new device, new therapy, new something.

Holden and I have started “Holding Life Together.” Our mission is to connect people because connection is the most important thing for us. It fuels you to be more motivated to heal, to keep going, whatever it is. Holden thrives on connection, and so do my husband and I. And so that piece is very important to us.

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Holding Life Together started with a support group for people in their 20s who have experienced a traumatic brain injury or other catastrophic injury or illness. Now, the Ludwigs are launching a caregiver support group as well. They have a website and social media presence @HoldingLifeTogether. Trisha says Holden’s approach to life is filled with positivity, and it rubs off on her.

“It’s who you surround yourself with,” Trisha says. “You know it's positivity. That doesn't mean we don't have crappy parts too, right? We're just trying to show the whole journey of a work in progress because a lot of this we've learned the hard way, but it all goes back to being human and having these experiences — it's just living a human life.”