Caregiver Experiences

Uncommon Lungs: Beyond the Episode

Image of caregiver, Jen, and her son, Michael

Preparing your loved one for independence is a long journey, but it’s important to take it day by day. Caregiver Jen and her son Michael have faced a variety of challenges, but their resilience and commitment to one another never waivered.

From a childhood spent in and out of hospitals, to navigating shifting family dynamics through a divorce, to running his first half-marathon, and preparing to graduate high school, Michael and Jen reflect on how they got through it together.

Remember, everyone’s experience with CF is different. Make sure to consult with a doctor before engaging in any strenuous physical activity.

How are you making the shift from being a full time caregiver?

Jen: It's definitely nerve-racking, right? I'm excited and scared all at the same time. It's a weird mix of emotions that happen. I think back often to, you know, when Michael was diagnosed and thinking like, gosh, what is high school prom going to be like? What is graduation going to be like for him? You know, how sick will he be during this time period? Will he get to see this? And seeing it now and seeing how well he's doing, I'm overly excited, of course, but I'm also nervous to let him go, right? I think any parent is, with or without an illness involved, but with an illness involved it does add a little bit more stress.

But we have been preparing for many years now, for this moment and we are really, really excited that we're here. I think one of the things that's important to me…looking into the future, is trying to do everything I can to make sure his adulthood is…a fun, exciting time for him to accomplish his goals.

How does your daily routine help you accomplish your goals?

Michael: Yeah, so it takes a lot of discipline…and knowing why I have to do these treatments and take these medications is very big. Because if I don't know why, then it would just be me thinking that, oh, well maybe I can just skip it this one time, you know? But knowing that if I do skip this one treatment, I'll feel good the next day, but then in two months time, then I won't feel so good. And, you know, I wake up every morning and do a breathing treatment for about an hour. I put on this vest that shakes up the mucus in my lungs, take a bunch of inhaled antibiotics and medicines, and I swallow over 40 pills throughout the day, taking enzymes when I eat every time because my pancreas can't produce enzymes, as you know, and yeah. I do that breathing treatment twice a day, and if I'm sick, it's up to four times a day, each taking anywhere from 45 minutes to an hour.

How did you empower your loved one to take on more responsibility in his CF care?

Jen: It was really important from early on for me to make sure that Michael understood what cystic fibrosis was and, you know, down to the detail of what every pill was doing for him and the name of that pill. So even as young as, like, 5 I could show him a pill, and he could tell me what the name of the pill was, what it was treating, why he needed to take it, so that it became something he just knew as he got older and not something he had to learn as a teenager.

Which I think is really important for any parent out there who—who is going through something similar, is teaching your children young to make it second nature is really important to give them the life skills they need as adults to manage this illness.

How did your family dynamics and caregiver responsibilities shift through your divorce?

Jen: When Michael was younger, maybe around the age of five, his father and I did get divorced. And it was a hard time. I think it's a hard time for any family that's splitting, but you add a disease like cystic fibrosis to it, it adds a lot more stress. But with that, you know, things weren't always good in the beginning. There was a lot of turmoil, a lot of fighting, a lot of not communicating, right? And I think that adds a lot of stress, even onto Michael. As much as you think your child's not seeing or feeling those things, you know, they are, they absolutely are.

His father and I came to a really good point where we realized that everything we did going forward that related to Michael had to be in Michael’s best interest, and in order to get there, you have to let go of a lot of emotions. You have to let go of a lot of anxiety, a lot of hurt feelings along the way, and just focus on what's going to help Michael so that we can get to a point where we are now, where we can go to his events together and cheer our son on together.

“And I've learned through the years that it's so important to take care of myself, so that I'm stronger, both physically and mentally to be able to be that better caregiver for him.”

– Jen, parent of a child living with CF

What advice would you give to others facing major life challenges?

Michael: The biggest advice I would give, even if you don't have CF, is even when you feel like you've hit rock bottom, or at your, at your lowest point of your life, that's your lowest point…you can't go down anymore. So the only place to go is up and to move forward and to know that tomorrow's a new day.

Jen: My biggest advice to other caregivers and parents out there, or folks, you know, helping support those with cystic fibrosis, is just breathe. And I know that sounds cliché because we're talking about a lung disease here, but it's really important. Take a deep breath, understand that everything is going to be okay. You know, focus day to day.

But I think another thing is to make sure you're doing self care. I used to think when Michael was younger, if I were to go out with my girlfriends or go get my nails done or anything like that, that was selfish of me. And I've learned through the years that it's so important to take care of myself, so that I'm stronger, both physically and mentally to be able to be that better caregiver for him. So I think self care is another really big, important thing that people have to realize. It's not selfish. It's needed. And it's actually better for you and the person you're taking care of when you take those moments.