PH Caregivers, Family Members & Spouses

Hi @colleensteele, that’s unfortunate. Have you considered advocating for this during the pre and post-transplant process?

Maybe you could start with the connections you had when Cullen went through a transplant. Did you have a social worker or case manager that may have ideas?

You and other caregivers of those who go through transplants should…[Read more]

@jenc I don’t recall respite care being offered.

Understandably, a lot of help was offered to secure Cullen’s mental wellness while recovering from transplant but nothing was offered to the parents and siblings. I’ve thought a lot about this over the years and it kind of bothers me.

A LOT of responsibility isn’t just placed on caregivers during…[Read more]

That would be interesting to hear if anyone has used their services. When I worked in hospice care and home health, we had respite care options for caregivers and families near burnout.

I often find it frustrating that as the nurse seeing these caregivers and patients several times per week and suggesting respite care, often the doctors did not…[Read more]

@jenc I didn’t know about the NORD respite program either. I happened upon it while doing a little research for my column. If anyone has used this program or reaches out to them in the future I would love to hear about the experience.

Thank you for your kind words of support to the caregivers. We are all in this PHight together!

Hi @colleensteele, you’re a rare caregiver and an amazing, supportive one. You think about caregiving and think of Cullen. However, in the PH forums and community, you also use those same caregiver skills of patience, knowledge, and empathy for others like us.

I didn’t know about NORD’s respite program; that’s an incredible resource I…[Read more]

Hi @colleensteele, I am not a caregiver, but I can relate to the brain fog you experience. My psychiatrist here screened me for depression because she thought that could be contributing. However, she believes it’s my anxiety and I have a bit of ADD. I just thought I was an overthinker.

I’ve also been less organized the past few years than…[Read more]

Though I would check-in with our caregivers. How’s the brain fog these days?

I’ve really been struggling with it. You know how they say too many cooks in the kitchen? Well I have too many thoughts in my head making my mind disorganized!

Please, tell me I’m not the only one!

What an excellent way to share how you learned the intricate details and can share this with others. I like how you broke it down; it reminds me of being in class.

Thanks for sharing this, @colleensteele. I know many will benefit from reading these tips.

Hi @colleensteele, yes, brain fog is common for PH patients and caregivers. For caregivers, I think that overdoing and not sleeping well or pure exhaustion leads to brain fog.

With caregivers trying to balance so many tasks. They often neglect adequate nutrition, too, which can contribute to brain fog.

I’m a PH patient who experiences brain…[Read more]

Hi @colleensteele, we have to take care of our caregivers! Y’all keep us PHighting!

I didn’t realize you go to Starbucks daily, is that most weekdays? I bet they certainly know you and your Peppermint Mocha order. Do they? What other drinks or new items have you tried?

Kudos to you for taking those drives each day. Is this when you leave your…[Read more]

Thank you for reaching out to the caregivers, @jenc. Burnout is a real thing. I try to leave the house at least once a day, even if it’s just a Starbucks run. I find the temporary change of scenery, fresh out, chatting with the barista, often gives me an emotional boost when I need one.

What do our other caregivers do to fight burnout?

It’s Stress Awareness Month, y’all! How are our caregivers, family members, and spouses doing with handling stress? Caregiver burnout is all too common, and we want to support y’all where you’re at.

Oh, @colleensteele, I love this piece and am guilty on many occasions. The first thing that came to mind was when I was spending time with my parents last week. I was always the caregiver before PH and tried not to let it stop me, especially with my parents, hubby, and kiddos. On many occasions, while supporting my mom in dealing with the year…[Read more]

Well said, @colleensteele! It always seems like everyone is caregiving for others. In nursing, I often reminded families that although some family members may not be doing direct hands-on care, they may offer emotional support. All parts of wellness are included in caregiving.

@jenc I’ve been thinking a lot about you and all our patients here in the forums and how much they support one another. In one way or another we are all caregivers here.

Hi @colleensteele, I can’t begin to imagine how much work you do care for Cullen and your hubby, too. Please know that you are only human for you and our other caregivers. You bring up an important reminder, “you are only one person,” that hits home, and I hope others will remember this.

I worry about you and our other excellent caregivers…[Read more]