PH Caregivers, Family Members & Spouses

[Colleen Steele]

We have a few new caregivers who have joined the forums and want to check-in and see how they are doing. As caregivers we often respond to questions with the patient or loved one in mind. Right now I really want to know how YOU are doing? What are you struggling with most right now, and it doesn’t have to be PH related.

[Jen Cueva]

Caregivers are amazing but need breaks, too. I am looking for our caregivers and family members and want to check in on y’all. What is your main struggle at this time? Are you resting? Eating and drinking?

Our caregivers often put themselves last and don’t get the rest, nutrition, and hydration needed. As a patient, I admire the strength of our caregivers and their hearts. But we also know that “you can’t pour from an empty cup,” right?

What can we do here in the PH forums to support you right now?

[Colleen Steele]

Thank you @jenc for bringing this important topic back up to the top. I hope the caregivers among us will open up and share.

Knock wood…Cullen has been doing really well health wise. He has gone months now with controlled blood pressure and his kidney function has been stable (well, as stable as he can get with kidney disease).

So, my concern has been more on a social, academic and career level. He will be 22 in December and due to Covid his development in these areas were paused. It’s been stressful trying to help him get motivated to move forward again but we have been making progress.

He has been accepted to a college and hopes to start on-line classes in the fall. He really needs a job but preferably one in which he can work from home. That is still an effort in progress. But he has been hanging out with his brother and his friends a little and that’s been an emotional boost for him.

He is also looking into getting his permit and eventually his drivers license finally.

I guess this is all normal stuff that moms/caregivers worry about but it’s feels a little different when health held him back for so long in doing these things.

[Jen Cueva]

Hi @colleensteele, I am grateful that Cullen is stable, especially as far as his CKD.

I love that you are now focused on things, like school, a job, and his permit. It sounds like Cullen is trying to start these things. I am happy that he and Aidan are so close, and hanging out does help him, I am sure.

I bet he will be excited for classes in the fall. What is he interested in? Did you mention social work before?

I am hopeful that he will find a job that he can do at home. That in itself will be a boost to his self-esteem, I bet. Please do keep us posted.

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