Stronger together: Patient and caregiver collaboration in FA

Sean: Sure.

Kyle: I think that, like somebody said earlier, everyone is different, and we all have to realize that this is hard, what we’re doing, just dealing with this disease and trying to put ourselves in that mindset when we’re interacting with each other. I feel like is important.

Sean: Sure. So I’m going to reword that question a tiny bit, and I’m going to bring in Norman again for this one.

This is assuming — and I don’t mean to put you or your family on blast — but assuming that people in your life don’t, or others have maybe at times not executed the treatment regimen or plan that everybody kind of had as an expectation, whether that is skipping a prescription every now and then, or maybe not working out or not eating right. Or, you know, that could be 100 different things for different people.

How did you address any kind of slump that may have occurred over the years when the person you’re caring for maybe fell off track or got into a bit of a slump with their regimen?

Norman: Yeah, that’s a good question because — you know, you mean, like, video gaming all night long, and you have appointments tomorrow? Yeah.

Sean: Exactly.

Norman: You know, like that? Yeah. So those are some of the concerns.

And one of the things is, again, it’s his life. And what might — me and the caregiving team that we have, I try to make sure we’re aware of the appointments because appointments, I mean, his cardiologist last time said, “Please do not come to the appointment asleep again. I need you to be awake so that we can talk about things.”

And it was kind of an eye-opener for him because he had stayed up too late playing video games. And it’s kind of like now we have a little bit more communication because it’s not just Dad telling him or a caregiver whining to him that he has to get to sleep.

However, we have rearranged you know, him going through college, he studied all night long. He’s a night owl. And, you know, Mom and I have jobs during the day. So staying up all night and trying to get him taken care of and everything else didn’t work. So he has caregivers now at night to facilitate his lifestyle.

Now, that still comes with a responsibility, that if he does have appointments, if he does have medications — he’s diabetic so he still has to take the insulin, or he has to take sugar as it is —  and he has to use moderation. He can’t have five bowls of ice cream and cookies, you know. And so when he slips up, there are consequences.

Sean: You know, I love and appreciate hearing that. You guys all work together to find a balance that works for him and works for you guys. That’s not always easy, right? Or an easy adjustment?

Norman: It’s not.

Sean: Victoria, I’d like to throw one to you regarding challenges. And as the caregiver for your husband, how do you work together to prevent caregiver burnout? I would — I mean, if I had a partner, after like three days, I’d be like, “Dude, you’re on your own.” Like, how do you manage trying to encourage Nick to be self-sufficient and empowering but also avoid burnout for yourself?

Victoria: I think that early on in our relationship — like before we had kids, when it was just us — I had a tendency to take on quite a bit myself. And then, as time went on, as we had kids, as we both grew in our professional careers, I think that part of preventing burnout is recognizing that sometimes you need help. It’s OK to ask for help.

We have other caregivers, PCAs, who can come in in the morning and evenings to help Nick get ready for the day or for bed. Because we also have two toddlers, young children running around.

So I think that, again, kind of similar to the first segment, the key is open communication with one another. If you’re reaching that breaking point, you need to ask for help. Say, “I need a minute.”

Both of us take time out of our day as best we can to exercise. We have weights and a little bench in our bedroom. Nick will just grab them from the bench and do some reps. That kind of helps him take care of himself and gives him a minute to take a break from the day. I have the same — I mean, we have a workout bike in the basement. If I can get up early enough, even like 10 minutes helps.

Just having that time for myself where I can refill the cup. I know that’s a bit of a cliché, but it’s really important to make sure you take care of yourself as much as you can if you’re going to be caring for others.

Sean: Yeah, I appreciate hearing that as well. Thank you.

Kiersten, you mentioned something about one time your mom said something that caused you to feel embarrassed or got you frustrated. So are there any specific tools you can share to help your mom avoid burnout? Or even you, from that overbearing parent-caregiver feeling? Is there anything specific you can do to help communicate some boundaries without making your mom feel bad, or without you, you know, saying no to help that you might actually really need someday?

Kiersten: Yes. Communication is key. My mom having two kids with FA can be very overwhelming. I try to be very transparent with what I need help with. My mom, she is just always willing to do so much for us. So I think just being so appreciative and letting my parents know that I am so grateful for what they’re doing has helped prevent burnout for them.

Sean: Yeah, I imagine it’s probably really easy — especially, at least, I know in my family life, you get to a point where you expect somebody in the family to do your laundry, or you expect them to do X, Y, or Z. And the reality of it is, they don’t have to. So being intentional about that gratitude and expressing it, I imagine, goes a long ways for yourself and everybody around you.

Kiersten, can you think back to the time where you were coming into adulthood? Were there any tips or tricks you might be able to share that helped you manage the transition from being dependent on your parents for a little bit of everything, to being a little more independent and an adult, if you will?

Kiersten: Yeah. So I would kind of direct this to going to the doctor. My parents were always the ones who were very prepared with their research, and with FA being a rare disease, a lot of doctors don’t really know what it is. Which is fine, we just have to tell them about FA and make them aware about it. But my mom would come prepared with all the documents and email them beforehand. So when I would go to doctor’s appointments, it would feel like the doctor just knew about FA.

This was so helpful when I was in college and didn’t have my parents with me. I went to the doctor because my heart was hurting. I told the doctor, “Can I get my heart checked out?” And he was like, “You’re young and healthy.” Since I don’t have a cane, he just assumed that I was healthy. I told him I had FA, but still, he was like, “You look healthy.” So, I tried to advocate for myself, and the better route would have been being prepared with my documents. I needed to get my independence together and be prepared with paperwork as an adult.

Sean: Sure. I imagine, well, “I’ve heard it said,” and “they say,” “everybody says” — there’s no better lesson than learning trial by fire, so to speak. It sounds like maybe that first cardio appointment for you was trial by fire. I think we’ll be able to come back to that in our next segment.

Kyle, I’ll give you maybe the last word here, or maybe not, depending on how long- or short-winded you are. But can you think — I know from your book, your film, and other things you’ve been very vocal on, in the first several years of your diagnosis, you didn’t talk about it. It was very much a — I don’t want to say denial, but it wasn’t a day-to-day conversation.

Can you remember or think back to the time where it was time for you to transition from pediatric to adult care, and what challenges you faced, and how you faced them?

Kyle: Well I remember a time when I sat down in the living room with my parents, and my dad — I was like, “Oh, it’s not a big deal. This isn’t the worst thing that ever happened to anyone.” And my dad was like, “Well, it’s happening to you, and it’s happening to us. So let’s deal with it.”

That was really the time when I was like, “OK, I have to be proactive and figure this out. I have to be the master of my health, my healthcare, my future.”

I feel like it takes that for each of us to just realize it’s up to us, and no one is going to do it for us. With my family it’s a team. We’re all in this together, but everyone has to do their part. You can’t just expect someone else to do it. It’s really that realization that it’s up to us.

Sean: It sounds like your dad was making a beautiful point, which you’ve also just made — that it’s never just the individual, right? It’s the whole family. I’m sure everybody can share.

This is probably a great transition into our third segment, which is talking all about advocacy and support.