Transcription:
Advice for Caregivers

Caitlin Whyte (Host): Welcome to Picking Our Brain with Shepherd Center. I'm Caitlyn Whyte. Family members and caregivers are an important part of the rehabilitation and treatment process. Christine Trotman's daughter Eliana first began experiencing symptoms of neuromyelitis optica in December, 2020. As her daughter began treatment at Shepherd Center's, Andrew C. Carlos, Multiple Sclerosis Institute, Christine found herself adjusting to her role as a caregiver. In this episode, Christine shares her experience as well as advice for other caregivers. Start off a bit by telling us about the early days, when you first found out about Eliana's diagnosis, what were your thoughts going into this journey?

Christine Trotman (Guest): The early days are kind of a blurr a bit. I, I was in shock. I think I was in just complete shock, because I just could not, at first she was misdiagnosed originally. So, we had went through a few hospital visits and stays before we got to the point where she was properly diagnosed. But, when I finally, I didn't quite understand what neuromyelitis optica was. I just knew that, they were giving me no guarantees that she would walk again. So, I think my whole body physically, emotionally, I was in shock. And I didn't share that with anybody, not even my husband, because saying it was too frightful, but I just knew I had to do whatever I can to get my daughter through it.

Because at that time, when she was diagnosed, my daughter was unaware that she was paralyzed. She didn't even, she was out of it completely. So, it was just me with this information who might, you know, that I didn't share it with anyone at that time. But one thing I had to do was I had to contact her job though first thing, because, you know, she was supposed to start work on January 5th. So my first step was, I needed to speak with her employer and let them know that she will not be starting January 5th. And I think that's when it probably hit me at that point, because I did have to say that out loud. And I think I, when I was talk, telling them, that's when I broke down in tears for the first time. It hit me this thing is real.

Host: So when you guys found Shepherd Center, how did they help you and your family? How did you adjust to this new part of your life?

Christine: I didn't find Shepherd Center, like Shepherd Center found us. So, I didn't even know that this Jefferson existed and I was totally clueless. I just know that in Emory, we were in a hospital and they said, we can treat her here. We have a fine staff here, but we think she would be better suited at this place called the Shepherd Center, which was a mystery to me and we're going to do everything we can to advocate to get her there. Next thing you know, they were calling me, Emily, her caseworker, they were on it so fast. They were calling me on my phone and I was getting emails.

It was happening so fast and I didn't have time to even think it was like, you have to do this. You have to do that. You have to get a COVID test. Once you come here, you cannot leave. And we're going to send an ambulance and we're going to come and get her and she'll be here. It was like, what is going on? What is happening. WE's going to this mysterious place called the Shepherd Center. I didnt even know what was going on. But they were so on it and had everything because you are in shock. They had everything in place, everything I needed, where I needed to go get my test at what I should pack. And I was just in a blur. I was just following their steps, like, like a soldier, like, okay. Let me do that. I don't know where I'm going, but I'm just going to follow my navigation and listen to this, this caseworker, Emily who's on it and do everything she tells me to do. But when I got there, they had psychologists and everything on staff and I mean, they just. It's an unbelievable place. So they kind of found, I say they found me because I didn't even know they existed. I didn't even know it was a hospital.

Host: Yeah. Yeah.

Christine: I was clueless.

Host: Well, it's a part of, part of their region you didn't really ever have to know about before then. Right?

Christine: Yes. Exactly. It wasn't a journey that I had even anticipated, you know, without there I was there, there we were on this journey that's changed our life forever.

Host: So in the year, since Eliana's diagnosis, you've shifted to becoming her caregiver, I guess again. Right. How has that change been for both of you?

Christine: Well, we're, we're a team. And I think that as a result of this experience, I think we're better people going through it. Not a journey I would choose, but I could say I like myself better. The outcome of this because of the empathy that we have, not, you know, just, you know, I consider myself extremely empathetic person, but now it's on steroids, you know, do you have this other world of disability and accessability that you took for granted. You know, my daughter called it, Able Privilege, you know, you just get out of your car. You just do things. You go into a door, you never think, you know, is it assessable? You're just able to do it. And that's a privilege that I was not aware that I had, but now I notice it everywhere and we are advocates and in need of accessability standards and we're just become that voice for them. And it's just opening up a world to us that, I feel like I'm blessed to be a part of. I mean I go to like a consignment shop and it, and it's like, how can I get my daughter in here when there's all kinds of chairs on the outside, and she'd like to come and see your wonderful things in here, but she can't get in here because your chairs are in a way.

So I become like talking to managers gently of course, and patiently about how they can make their places more accessible. And that's just not there, but it's everywhere I go. I'm just always on and looking at these things, not just for my daughter, but for others as well.

Host: Yeah, absolutely. And tell us, how is Eliana these days? How was the last year been?

Christine: She's, she's just amazing. She's a fighter, resilient, determined. She's, she's surprised her medical team by her progress. She doesn't stop. She continue, in fact we have to get her to rest. She went from, from being paralyzed to power chair, to rollator, to walker, to now crutches and she's and she's taken advantage of all the outside or out patient resources that Shepherd has made known to her. And she's used that to her advantage to push herself forward and to progress in her therapy. She, she listens. She, she's, she's just amazing. She's doing extremely, well. We just moved back into her home, right before Thanksgiving, after being gone for almost a year.

And it's just been amazing to see her progress from inpatient to where we are now. She's doing amazing. She's got some ways to go, but she's, she's headed in the right direction. For sure. And that's, and I, and I attribute that to the team at Shepherd. I really do who prepared us and prepared me to be there for her and in the capacity that she needed.

I, I feel like I can be, like I said, a tech right now. I think I could just, I can apply for those jobs. Because I've done it all. I did it all and there was no re there was nothing that I would not be willing to do to assist her during this time, especially when she was an inpatient at Shepherd.

Host: Well, you mentioned earlier having that support when all of this was so new in the beginning was so crucial. What would your advice be? Or just any other tips for families who are in similar situations? Maybe there were you were a year ago just starting and confused and scared and overwhelmed.

Christine: You have to take advantage of the tools and the resources that they have for you. That is your time to learn everything you need to learn. You have to be as all in as you possibly can be. You have to be as hands-on as you possibly can be because it not only is it good for you, but it communicates to the person, your loved one that you're in it with them. You can't turn away from anything. You've got to be willing to do as much as you can. And, you know, as much as you're physically able to do. And I think that, that has been something that has relieved my daughter, Eliana of the anxiety, because she knew that I was equipped to take care of her when we left there, because you've got all the support at Shepherd Center that you can have. They have everything there, but they appreciate a person who's willing to do it all because they know when you walk out of here, it's going to be a different story.

You've gotta be able to do it. And I think that I was communicating to Eliana that, that we got this, we got it. You know, we're gonna, you know, the showers the, the, whatever it takes, the changes that we have at the mix, that we have it, we got it. We're prepared to do it because we've taken advantage of everything that they have in there and it's all for you.

And it gave her a sense of security when she walked out of there saying, okay, you know, we're going to be okay. We are going to be fine. And I think that would be my biggest advice for people in my situation. You find yourself inpatient, you're looking, you're in shock. You're wondering, you know what you're going to do.

Listen to the team that they assign to you. Take advantage of everything. Be all in as you possibly can be because it strengthens the person you're taking care of when they see you doing that kind of stuff and it bonds you and we have a bond between Eliana and I have a bond between all of my kids, but coming through this, we are, we say that all the time, we're a team. We are a team. She told me she wants me to walk her down the aisle. You're giving me. And my husband's fine with that. He's like fine, you deserve to walk. So, but anyway, that, that would be my number one thing to as be all in as possible.

Host: Well, as we wrap up our episode here, Christine, is there anything else you'd like to share about your journey, your time at Shepherd Center?

Christine: I just want to just express my gratitude to the team at the Shepherd Center. We felt like we were part of the family, forever a part of the family and tied to that. Go out of there, just to be careful in the decisions that you make, especially when it comes to home modification, that you be very, that you exercise as much wisdom as you possibly can.

And don't make quick decisions about changing your home. We would have lost thousands of dollars if we hadn't done that. But just exercise as much patience, use the resources. Talk to people, talk to family and just remain as hopeful as you can be. Join support groups too. We have done that online too. We're a part of, two of them. Two support groups. I can't, I just can't. I just cannot express how amazing the place is the Shepherd Center, because it was, it's a place of hope, is a place where I was able to hope every day for my daughter, for her recovery and I'm forever grateful for that.

Host: Well, thank you so much for sharing your story with us Christine. Eliana sure is lucky to have a mom like you. To find more about our services, check us out online at goodshepherdrehab.org. This has been Picking Our Brain with Shepherd Center. I'm your host, Caitlin Whyte. Stay well.