Public Group
active 1 week, 5 days agoThis forum is a place for those caring for a loved one with pulmonary hypertension to connect. Share tips, ask questions, etc. Veteran parents and caregivers may help those with newly diagnosed children and spouses.
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Jen Cueva replied to the topic What’s Rare About A PH Caregiver? in the forum
PH Caregivers, Family Members & Spouses 1 week, 5 days ago
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]
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Colleen Steele replied to the topic What’s Rare About A PH Caregiver? in the forum
PH Caregivers, Family Members & Spouses 1 week, 6 days ago
@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]
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Jen Cueva replied to the topic What’s Rare About A PH Caregiver? in the forum
PH Caregivers, Family Members & Spouses 1 week, 6 days ago
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]
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Colleen Steele replied to the topic What’s Rare About A PH Caregiver? in the forum
PH Caregivers, Family Members & Spouses 2 weeks, 1 day ago
@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!
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Jen Cueva replied to the topic What’s Rare About A PH Caregiver? in the forum
PH Caregivers, Family Members & Spouses 2 weeks, 1 day ago
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]
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Colleen Steele started the topic What’s Rare About A PH Caregiver? in the forum
PH Caregivers, Family Members & Spouses 2 weeks, 2 days ago
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?
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Jen Cueva replied to the topic Are You A Caregiver Who Struggles With Brain Fog? in the forum
PH Caregivers, Family Members & Spouses 1 month ago
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]
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Colleen Steele replied to the topic Are You A Caregiver Who Struggles With Brain Fog? in the forum
PH Caregivers, Family Members & Spouses 1 month ago
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!
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Jen Cueva replied to the topic What Have You Learned As A PH Caregiver? in the forum
PH Caregivers, Family Members & Spouses 5 months, 3 weeks ago
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.
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Jen Cueva replied to the topic Are You A Caregiver Who Struggles With Brain Fog? in the forum
PH Caregivers, Family Members & Spouses 9 months, 1 week ago
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]
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Colleen Steele started the topic Are You A Caregiver Who Struggles With Brain Fog? in the forum
PH Caregivers, Family Members & Spouses 9 months, 1 week ago
Brain fog can be a side-effect of medication, caused by exhaustion and stress, a symptom of PH and/or an effect of a coexisting condition. Most PH patients have dealt with brain fog in one form or another, but what about caregivers?
Caregivers certainly experience their share of exhaustion, stress and emotional fatigue and when they do, it has…[Read more]
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Natalie Elizabeth Jacobs joined the group
PH Caregivers, Family Members & Spouses 10 months ago
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Jen Cueva replied to the topic The Stresses of Being a Caregiver in the forum
PH Caregivers, Family Members & Spouses 10 months, 4 weeks ago
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]
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Colleen Steele replied to the topic The Stresses of Being a Caregiver in the forum
PH Caregivers, Family Members & Spouses 10 months, 4 weeks ago
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?
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Jen Cueva replied to the topic The Stresses of Being a Caregiver in the forum
PH Caregivers, Family Members & Spouses 10 months, 4 weeks ago
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.
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Jen Cueva replied to the topic Do You Practice What You Preach? in the forum
PH Caregivers, Family Members & Spouses 11 months, 3 weeks ago
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]
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Colleen Steele started the topic Do You Practice What You Preach? in the forum
PH Caregivers, Family Members & Spouses 11 months, 3 weeks ago
Offering advice is one of the many things that caregivers do for their patient/loved one. When you think about it, much of the advice we give could and/or should apply to the caregivers as well.
How well do you take care of the caregiver? How well do you heed your own advice?
Ask yourself these questions and consider the advice you would give the…[Read more] -
Jen Cueva replied to the topic The Stresses of Being a Caregiver in the forum
PH Caregivers, Family Members & Spouses 1 year, 1 month ago
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.
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Colleen Steele replied to the topic The Stresses of Being a Caregiver in the forum
PH Caregivers, Family Members & Spouses 1 year, 1 month ago
@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.
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Jen Cueva replied to the topic The Stresses of Being a Caregiver in the forum
PH Caregivers, Family Members & Spouses 1 year, 1 month ago
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]
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