PH Caregivers, Family Members & Spouses

[Colleen Steele]

As a caregiver to my son, I understand the demands of being available to someone 24/7. Probably like you, I would have it no other way. Caregivers genuinely want to be that person that their loved one can rely on for emotional and physical support.

What happens when the caregiver gets sick, either with a cold or something more concerning? Who helps you and who helps the person you normally assist?

My husband and children are usually good about checking on me and seeing to my needs. My son who had PH uses it as an opportunity to flip the switch and lecture me about the importance of taking care of myself and seeing a doctor. He also does a good job of seeing to his own needs and what he can’t do, my husband provides help. These times are often an eye opener to ways I could delegate care a bit more even on a regular basis. More importantly, I evaluate the important things that I need to educate others about, because you never know when the caregiver might become unexpectedly unavailable.

[Jen Cueva]

Hi @colleensteele, I am hoping that you are not sick now. This is an important topic. The last few weeks when my hubby was home sick with symptoms of COVID-19. It was difficult for me, emotionally and physically.

Although I am not a PH child, he is my caregiver when I am down. So, those few weeks, I was trying to take care of myself and him from a distance. He also has been picking up meds and groceries for most weeks since the pandemic. I ordered grocery delivery through Instacart, and we made it through it.

Our daughter offered to help, but we did not need anything, and she could not be around either of us, so I thanked her.

I love that Cullen switches the flip and takes care of you. This is so warm and fuzzy and the perfect way to start my day. BTW, did you talk to your Rheumatologist yet? I am hoping that you are feeling OK, and this is just a question. I am sending you hugs from Texas.

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