Caregiver Corner - Jane

From mom to caregiver and everything in between

A chat about balancing self-care and caregiving

Jane is a caregiver to her 25-year-old daughter, Nicole, who was diagnosed with pulmonary arterial hypertension (PAH) when she was 15. For a time, Jane “lost herself” in the roles of caregiver and mother. But over the past decade, Jane has learned the important lesson of caring for herself, too, and what it means to be a mother, a caregiver, and an individual.

Q: Jane, can you tell us a little about how your daughter was diagnosed with PAH?

A: Nicole was born with a congenital heart defect, but we didn’t know that at the time. For most of her life, she had issues catching her breath when she was running, and I noticed that her nails would turn blue sometimes. When she was younger, I didn’t think too much of it. Looking back now, it’s my biggest regret that I didn’t advocate for my daughter’s health sooner. When she was 15, it got to the point where she couldn’t ride her bike without having to stop because she was having trouble breathing, or if she dropped something, she had trouble picking it up. So, I took her to the doctor, and they did some diagnostic testing that showed she had PAH.

Q: In caring for Nicole, how do you find the time to take care of yourself, and why do you think self-care is important?

A: It’s changed a bit over the years. When Nicole was born, I lost who I was a little bit. My sole focus became raising her and that was enhanced when she was diagnosed. But I have learned that I need to take care of myself too. So, what I do is wake up extremely early, before anyone else is awake, and I’ll use that as my quiet time. I use my mornings to read the Bible, maybe do a class, or just sit quietly. If I get stressed throughout the day, I look back on that quiet time and it helps me. Sure, it’s not as much time as I would like to have, but it gets me through the day. I also think healthy eating is important, so I grow a lot of herbs and incorporate them into meals for Nicole and me. I don’t exercise as much as I probably should, but I go for regular walks with Nicole, which is relaxing to me.

Q: You and your daughter have been through a lot together over the past decade. How have you both adjusted to your changing roles as Nicole became an adult?

A: As Nicole has gotten older, my involvement in her care has changed a little bit. I try to help Nicole only when she specifically asks for help and we discuss what she expects of me as her caregiver. I still manage all the administrative aspects of her care. I schedule the appointments and talk to the doctors with her. For the most part, I encourage her to make the decisions about her treatments and to monitor her health because she’s an adult now. Of course, if she asks for help, I’ll be there for her.

Q: It sounds like you all function well as a team. How do you and Nicole work together to monitor her health?

A: Typically, Nicole has an Echo done at least once a year or her PAH specialist will do a right heart catheterization when warranted. Nicole is actually very good about tracking her symptoms and we use a shared online document, where she writes down everything from her weight, her oxygen saturation levels, and her blood pressure. She also keeps a food diary so she can better understand whether changes in her vitals are triggered by something she’s eaten or if it’s something more serious. I let her monitor all of that herself and I just keep an eye on the numbers so I can know what needs to be mentioned to her doctors in case she forgets or feels uncomfortable discussing it.

Q: You’ve been Nicole’s biggest supporter over the years, but where have you found support as a caregiver?

A: About 6 months after Nicole was diagnosed, I found the Pulmonary Hypertension Association and that changed everything for me. That’s how I got connected with a support group, and they became like a family to me. It made me feel less alone and eventually I became a co-leader of the support group. Over the years, it’s become important to me to help those who are newly diagnosed with PAH because I know what they’re going through. Having that connection helps me realize how important it is to show kindness to people because they might have an invisible illness. Now, I look around and I know that just because someone doesn’t look sick, it doesn’t mean they aren’t. Everyone has their own story.

Q: Reflecting on your experience as a mother and a caregiver, what advice do you have for others caring for a loved one with PAH?

A: I think it’s important to set boundaries and expectations with the person you’re caring for. Each relationship is different, but for example, with Nicole, I only help her when she asks for it. This is hard because I’m her mom and I always want to help. But I know what she needs and expects of me and I have to give her that space to be as independent as possible.

The most important thing I can say is that a caregiver needs to take care of themselves, whatever that means for each person. If you find joy in exercising 5 days a week, go for it! Finding something that’s just for you is necessary because it reminds you that you’re not just a caregiver. Your needs are important too.

Learn more about PAH

PAH is a complicated disease that can be difficult to understand. We’ve broken it down for you with easy-to-understand information, simple graphics, and informative videos from a PAH specialist.

What Is PAH?