Laura Camponeschi - phaware® interview 579

Who Cares for the Caregiver When Everyone Else Comes First?
 
Behind every pulmonary hypertension patient is someone quietly running on empty. Laura Camponeschi pulls back the curtain on caregiver burnout — the emotional, mental, and physical toll that builds when someone is “always on” and never feels safe stepping away.

I am Laura Camponeschi. I am the medical office coordinator for the Johns Hopkins Pulmonary Hypertension Program. I have been with the office since 2009, so about 16 years, and I am privileged to be the support group leader for the Johns Hopkins PHA support group at our hospital.
 
Today, we’re going to talk about a topic that is near and dear to my heart, caring for the caregiver. 
 
Every day, I see how important it is to make sure our caregiver’s cups are just as filled as our patients, especially since they are one of the most essential people on our patient’s care team. I’ve seen so many cases where caregivers were the ones taking care of patients and they got burnt out themselves and the patient was actually in worse condition. They lead an active role in helping them make decisions and informed decisions. There’s also the mental and emotional aspect where you do have to be their support and try to help them through, because PH is a pretty devastating disease at times and it does get hard and scary. So, you do have to have someone there to help you emotionally and mentally cope with everything.
 
Of course, you’re also their caregiver. A lot of times when things get worse, you take care of all their daily activities, help them with all the meal prep, everything from A to Z at that point. Really, it’s quite easy to get burnt out when you have someone asking — and you’re happy to give, but someone asking so much of you and there’s only so much of you to go around. You have to wear many hats throughout the day, throughout every hour, to try to get everything done and make sure your loved one is cared for and taken care of well.
 
For the most part, I think we do a fairly good job of addressing that. We have two fantastic nurses who are very sympathetic and understanding and we really do try to take time to emphasize both that the patient obviously needs to be taken care of well, but that the caregiver needs to take care of themselves, too, and make sure they’re in a good state to help take care of the patient.
 
One of the biggest things with the burnout is just you have to be everywhere at once and it’s exhausting. Sometimes, you have to always be on and you can’t really get a day off, or at least you don’t feel comfortable taking off a lot of times and getting a day to yourself, especially when you know your loved one needs you. Fortunately, there are programs both with insurance and with even palliative care where there’s respite care options where a lot of places will be able to help take care of your loved one and give you a couple hours. Even a couple hours is great, just to give you a chance to relax and pause and take care of yourself and your mental health and your well-being.
 
One of the many things we talk about is both taking care of your emotional and physical well-being. Obviously, taking a break to de-stress and go to the mall or read a book or anything just to de-stress yourself. Even something as simple as going to get your nails done is fantastic. Then, obviously, the physical aspect, that it’s okay to take care of you too. Whether that’s going to the gym, which also gives you some endorphins with the mental health or just going to the doctors yourself and making sure you’re healthy. A lot of times it’s just reminding the caregiver that it’s okay to take care of yourself, too. You might not be as sick but we want to keep you healthy so you can take care of your loved ones the way you would want to and the way you expect yourself to be able to.
 
It’s hard, because I have that responsibility to the patient, so I feel frustrated for them at times. But then I try to step back and remember that the caregiver is a person too and they sometimes need time to themselves. It’s a very high-stress job taking care of someone all the time and being responsible to make sure someone else is going and doing as well as they can.
 
I always try to talk to patient caregivers and remind them that it’s okay to step back and take care of you for a weekend, or if you have family members, it’s okay to ask for help. That’s a big thing too, asking for help. It’s really hard to do. I know that personally, with myself, too, but if you ask for help, there are so many people that would like to help you a lot of times is what I find, but they don’t know how to help. If you ask for help and ask for specifics, people are happy to help and come in and sit with your loved one for a few hours or take them to appointments so you can get a breather or anything like that.
 
I think a lot of times is people don’t want to burden other people or they feel guilty burdening other people, because you feel the sense of responsibility that you have to do it all to take care of your loved ones. Or even as a patient, you have to do as much as you can and burn yourself out instead of asking for help.
 
I have found that patients’ loved ones are happy to help if you just ask them what to do, because sometimes people don’t know what would be the best and they don’t want to overstep or upset patients or even offend you. Not that they’re trying to, but they don’t want to upset you or make you feel bad for trying to do too much or they don’t want to hurt your feelings, which is another hard thing. You don’t know what to say or do sometimes, which also is scary.
 
Sometimes, in my day-to-day interactions with the patient and their caregiver, it can be pretty frustrating to see some caregivers much more invested and engaged than others, just because I feel that obligation for our patient to make sure they are the best cared-for patient they can be. But then I try to remind myself that we are all human and that caregivers are people too. They’re not just the caregiver, they are their own entity. Not saying they shouldn’t take care of their patient, but it’s okay for them to step back sometimes and ask somebody else for help or have somebody take their loved one to their own appointment.
 
Sometimes it’s hard, I think, as caregivers, because we don’t see what goes on at home. We just see who brings them to the appointment. Whereas, if the granddaughter always brings them to the appointment, I don’t see the daughter. So then it’s easy to assume they’re not involved, but they probably are just as involved. We just don’t see that aspect as much.
 
Going to the support group and having other people share their stories, which validate your feelings actually does feel good. It does help you feel like you’re not alone. I think the PHA support groups and support groups in general are good, because you don’t feel as alone. Hopefully, you have someone that can validate your feelings and share your concerns. Or as a patient, you can have someone that you can tell things you wouldn’t tell to other patients about how you feel or what’s going on. 
 
Sometimes, I feel like we’re so conditioned to throw on a brave face and be brave, but it’s nice to be able to share it, or you’re frustrated or you’re angry and it’s nice to have someone to share that with. A lot of times, support groups are great for patients for developing a relationship with another patient and being able to not be so alone. I find that the support groups help them connect and then they go on to develop great relationships out of the support group. 
 
I know the diagnosis, once you look online, is pretty grim, but to have hope. There are great places like the PHA and phaware® that can help educate yourself and help you connect with other patients and caregivers, so you’re not as alone. You don’t have to do it by yourself. You do have people. You just have to do your research and find out how to connect with people.
 
My name is Laura Camponeschi and I am aware that I am rare.

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