Stronger together: Patient and caregiver collaboration in FA

Sean: Yeah, I imagine it can be certainly upsetting, especially when a healthcare provider is telling you that you don’t know what you’re talking about.

Victoria, I feel like you kind of touched on this a little bit too. When doctors or care providers look to you first for responses regarding Nick’s care or whatever Nick is up against, how are some ways you would encourage others to navigate such situations?

Victoria: So sometimes it is, you know, as I explained earlier, that they look to me first, or sometimes they’ll look to me for further clarification. Nick will say something, and then they’ll look to me. The best thing I can do in those situations, again, is to take a step back and remind myself that this isn’t my care, it’s Nick’s care.

Again, I’m there to support him, so I’ll try and redirect. Sometimes I’ll summarize my understanding of what Nick was saying. I’ll say, “Well, as Nick was saying,” and I think that helps refocus for them again that he’s the patient. He should be the source because he knows himself and what he needs for his care the best. Even though I’m around him quite a lot, he’s the best person who can advocate for himself and what he needs.

Sean: Thank you very much, Victoria.

Norman, I’d like to explore what experiences you have had with Donovan in similar settings. How would you encourage Donovan or other patients to advocate for themselves, especially when there might be a dismissive tone or energy in the healthcare setting?

Norman: Yeah, it started out when he was a pediatric child, you know, and we were first told he wasn’t going to make it to 18. So we never thought we’d have to do this transition to adulthood. OK, surprise. We did.

But there were certain things, medically, that were relevant. He had the scoliosis surgery. It was impacting his heart. He was in pain. It was medically necessary. He didn’t have a choice. He had to get it done. Later, when his feet started to turn in, and he wanted to get that straightened out and get AFOs, he was looking to me to kind of mandate that. But it was “no, son” at this point. He still was pediatric. I mean, he was in his teens, but it’s like this is an optional surgery. This is up to you when it’s something about your life. And I think it’s important.

“Yeah. I’m going to step in and I’m going to be a little bit of a stronger advocate to make sure that it gets done. But this is something that you have to choose. You’re going to have to do the recovery. You have to do the surgery, and then you’re going to have to do the PT afterward. We’re there to support you. But this has now become your decision.”

And that’s a hard thing. He’s really like, “Oh, this ‘kid being an adult’ really sucks.” But it was like a reality check. Like, OK. Yeah, he’s making these decisions now. And so even now when we go and do things with — you know, I did get him to a therapist so he could see, talk, to somebody besides us about life in general and this thing.

I mean, can you imagine? I can’t imagine. You know, at his 18th birthday when he gave the speech, you know, “I’m not supposed to be here,” you know, and he’s here.

And so now we have adult decisions to start making. We need to go to college. We need to go and do things. And so, you know, it becomes this transition and this medical stuff is difficult because now you’re responsible for it.

You know, “Can I go live by myself?”

“Sure. But you’re going to need caregivers so you can be independent. Yeah. We support that but good luck getting a house that has all the cool equipment.”

“I got you.”

Sean: It’s your way of trying to get him to stay home, right? All those cool gadgets.

Norman: Well, you know, I have my mixed emotions. You know, I think if he could have a house down the street, I’d be OK with that. Yeah.

Sean: You know I want to throw a question out. And I would love for all four of you to answer. So I’m going to go back to Kyle on this one. We’ll start with you and we’ll just kind of work our way across the panel.

But Kyle, as a patient, what support do you find very helpful, or what support helps you thrive when it comes to your own emotional or mental health?

Kyle: Gosh, I like that question. I think for me, just knowing, like I have a list in my head of 10 people I could call right now and talk to about whatever’s going on. And I could call a neighbor, or one of six neighbors, and know that they would come over at the drop of a hat and help me — whatever, like put something on a shelf or help me make my bed or, you know, stuff that is difficult to do.

And so, I forget what your question was, but my answer is, you know, setting up that network. It has been emotionally supportive for me having a network that I know is there whenever I need it even. Gosh, I have some friends that I don’t talk to very often, but I know if I call, they’ll be there to whatever. So setting up the network I think it is a good thing.

Sean: Yeah, that goes back to something we alluded to a bit ago, right? Kind of presetting things in motion so that they’re there when and if you need them.

Kiersten, I’m going to throw the same question to you. You know you talked about having your notes in order when you go see a new doctor. Are there any other things that you find helpful, whether it’s from your friends and family or things that you make it a point to do on your own so that you don’t become emotionally or mentally drained or exhausted?

Kiersten: So I am a talker, so I love to keep people close to my life who have big hearts and are very understanding. So I know that I can call some of my good friends and they’re going to understand.

And maybe I’m going through a bad FA day, and my close friends and family know that sometimes I don’t want to talk about things, but they know that I love car rides. So we will get in the car and we will jam out, and we will go get ice cream. And then, if I’m doing a little better, then we’ll talk about it then. But people knowing my coping mechanisms has really helped me emotionally.

Sean: I love hearing that. Thank you. Car rides put me to sleep, but I’m glad that you’re able to find some enjoyment because of them. Especially, I guess, when you got the music going and —

Kiersten: Oh, yeah. All the way up.

Sean: Oh, Victoria, the same question, but from obviously the perspective of the caregiver, the wife, the partner in this whole journey. Is there anything specific that you lean on or that you activate to help make sure that you and/or Nick don’t find yourselves emotionally drained or taxed to a risky point?

Victoria: Yeah, I would definitely reiterate what, you know, Kyle is saying about having a network and further, you know, with Kiersten, the examples that she was talking about bring to mind, like, connection for me. And like something that Nick and I will often do is, like, we’ll send each other, you know, like silly memes or like, videos, like, throughout the day.

So, like, for us, humor is like a way that we connect, like when we started seeing one another and we were in a relationship with one another. We laugh a lot. Telling jokes, telling, you know, anecdotes and then connecting in that way and finding those moments for connection. Even if we are, you know, separate in our own, you know, workspaces during the day. It can kind of provide a moment of levity and, again, laughter and then a way to connect with one another.

Sean: I love that. Levity is such a good word too. I think you have to be OK with making fun of yourself a little bit. Yeah. And throughout the process.

Norman, I can already hear half your answer. You know, for Donovan’s mental health, he needs to play video games all night. You know — obviously, I kid — but when you consider the emotional health and mental health of you, your wife, and/or Donovan, what are some things that you guys have done over the years to keep yourselves in a healthy spot?

Norman: Well, we do a lot with the FA community. Again, we’re in Yonkers, so we’re just north of Manhattan, and we leave our house open for visits. We’re accessible. We’ve had tons of FA families come through visiting New York and just being able to be around everybody really helps you go to the conferences.

And when Donovan gets — I can remember the first time that I showed Donovan pictures of everybody that had FA from the FARA website when it was brand new. And he’s like, “I’m not alone.” It was huge. It was huge.

So, some of that is our ability to get out. Deborah and I have a lot of date nights, as Victoria says. I mean, we got past the trenches of having little ones and having to be on call 24/7, and then all of a sudden realizing that we were strangers and so that we needed to get our relationship back together.

And one of the things that we did for our sanity was we put cameras all through the house. And it wasn’t to be an invasion of privacy but it was just to be able to — you know, we’re sitting at dinner checking on, you know, “How’s he doing?” You know, “Has he flipped the wheelchair?” You know, it’s like your anxiety just gets to you. You’re just in your head. Even though you’re trying to relax and have a glass of wine in a nice restaurant, you’re still thinking, like, “Oh, my gosh.”

So then having the caregivers in spot, you know — they’re not servants. They’re not there for the beckon call. They’re there for emergencies. And so Donovan and I have had long conversations about this. You know, when you flip your wheelchair, you need a caregiver to be there immediately.

Sean: Yeah.

Norman: But, you know, if you drop your phone, use the magnetic claw and pick it up. Have your service dog pick it up. You don’t need to call out for every five seconds.

And in part of that, even in the “what we do now” is that if he wants time with us — because I’m the IT guy, and, of course, fixing a computer could take hours, and I just don’t have hours — I think we use what Victoria said. We use the shared calendar. He actually now schedules a mom-and-movie night. He schedules “dad, IT, working on my computers.” And what that does is get the pressure off of us of having to come home after work, be exhausted, and then have to do all of this IT stuff or working on helping him do something, which is important.

But so just mentally it’s you’re exhausted where, you know, Saturday morning we get up, we do it. It’s fine. You know, we’re good. It’s teamwork. Let’s get this done. You know, he’s become quite smart and working on his computers too. And he figured out stuff, and then I figure out stuff. And so then it becomes more of a good project. And, emotionally, we’re in a better place.

Sean: It sounds like what I hear you saying is that all three of you or everybody involved, you’re a little more careful about managing your expectations. And I love the shared calendar aspect of, you know, maybe not so regiment that you can only do it when you say you’re going to, you know when it’s on the calendar. There’s still, I’m sure, some give and take, but having a set kind of “Everybody knows this is what we’re doing Saturday. This is how we’re going to do it or address it Thursday or whatever.”

Norman: It also worked into the responsibility, Sean, of like if he wanted my help and I had time on the weekend to do it from 12 to 2, let’s just say then he knows he has to be up. Yeah, he’s got to go to bed a little bit earlier so he can be up. And so that, we do it as a team, because if not, then I do feel like a servant. I feel like somebody who’s — you know.

Sean: We all want to be helpful, but we also don’t want to be taken advantage of. Not that that’s what he’s doing.

Norman: Exactly.

Sean: But I understand those feelings and that thought process.