PH Caregivers, Family Members & Spouses

[Colleen Steele]

How are PH caregivers as rare as their PH patients / loved ones?

I am a “rare” caregiver and share examples of proof in a column On Rare Disease Day, let’s raise awareness about caregivers, too

February 28th was “Rare Disease Day” How did you spread PH awareness as a caregiver or on behalf of your caregiver?

[Jen Cueva]

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 appreciate.

On Rare Disease Day, I created a video and mentioned that I couldn’t have made it this far without the love and support of my caregiver, my husband, Manny. I thank Manny often. However, I don’t feel that’s enough to show my gratitude.

At times, since we are;t relying on our caregivers to feed and bathe us, etc., we take the little things you all do for granted.

Thank you, Colleen, for your love and support. But also, you’re reminded to include our caregivers as rare. Y’all are because you stick by us through the ups and downs of this PH roller coaster.

One note, taking care of yourself is essential! Let’s hear how you did this on Rare Disease Day.

[Jen Cueva]

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 appreciate.

On Rare Disease Day, I created a video and mentioned that I couldn’t have made it this far without the love and support of my caregiver, my husband, Manny. I thank Manny often. However, I don’t feel that’s enough to show my gratitude.

At times, since we are;t relying on our caregivers to feed and bathe us, etc., we take the little things you all do for granted.

Thank you, Colleen, for your love and support. But also, you’re reminded to include our caregivers as rare. Y’all are because you stick by us through the ups and downs of this PH roller coaster.

One note, taking care of yourself is essential! Let’s hear how you did this on Rare Disease Day.

[Colleen Steele]

@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!

[Jen Cueva]

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 always think it was necessary. They often suggested we increase our nurse visits. However, I often explained that I couldn’t be there day and night so the caregiver could rest and take much-needed breaks.

In hospice care, it was much better when we could call on our medical director, and he would always approve if we suggested it and why we felt it would help.

Colleen, did UC offer respite care at the hospital when Cullen underwent his transplant?

I found this link that others may also find respite programs in their areas. Check it out and let us know if you contact any programs and how it goes. It looks like this site also offers a variety of resources.

National respite network

[Colleen Steele]

@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 transplant recovery, it is expected. Of course we would go to the ends of the earth for Cullen without being asked to but I feel like there should be something in place to assist caregivers during that time.

[Jen Cueva]

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 advocate for this. I know you’re passionate and may make a difference for others who need transplants in the future.

Maybe talk with Brad. I believe he also has some transplant team connections he works with at UCSF. He was discussing this when we went to dinner.

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