Caregivers, how is the self care going?

I have gone from doing the bare minimum for myself to suddenly filling up my calendar with long overdue appointments.

I’ve been to the dermatologist to have some things removed, to the eye doctor where I ordered 2 pairs of expensive glasses. One for all activity including driving and the other are… Read more

Hi @colleensteele; excellent reminder for our amazing caregivers pouring their love into our care and often neglecting themselves. How are you doing with this? You have been through some frustrating weeks trying to get Cullen’s meds.

Are you practicing what you preach? How is your health? Are you taking time to rest and enjoy some “me” time?

Checking in with our caregivers. How are you all doing? Are you practicing what you preach!

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… 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… 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… 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… Read more

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?

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… 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… Read more

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… 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… 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… Read more

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… 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… Read more

@jenc feeling the need to be a “perfect” caregiver must be a common problem for caregivers because I felt the need to write about this topic too. Link: “Perfect Caregivers Are Not Real“.

I don’t discuss this often but I do a lot of caregiving for my husband too and between him and Cullen I sometimes feel like I’m not helping them to my… Read more

@jenc it is such a heartwarming column so I wanted to make sure everyone gets a chance to read it. I love the bond you and Sasha have!

Aww, thanks again, @colleensteele, for adding that important link. You are such a saving grace. What would I do without you?

Yes, they give us plenty to do, including loving them and writing about them, that’s for sure.

I thought of @traceyaustralianmigration-co-za when I was typing just now and her love of her fur baby.

Thank you @Jen. I am so happy that you have your sweet little Sasha. Think about what else our fur babies do for us…they give us something heartwarming to write about!

Jen forgot to add the link to the column she wrote about Sasha. Here it is:

The Secret Life of Sasha and How She Saved Me 

I love this column in many ways, @colleensteele. You shared how your family pets rely on you and the benefits and love between a pet and its owners.

Sasha has been such a calming part of our lives. She missed me, and I missed her unconditional love and support, too. I remember walking in the door after my COVID hospitalization and Sasha… Read more

This is an excellent topic, @colleensteele!

My personality likes to talk it out whenever anything is wrong. My son’s personality prefers “stiff upper lip and just deal with it.” I’ve had to accept that I owe it to him to let him wait to talk to me about things until he wants to discuss it (which is usually when a doctor has either admitted him… Read more

@jenc I’m glad you brought up your habit (of I should say compassionate personality) of jumping in and helping everyone. This is a concern of mine whenever I dump my daily woes on you. You always ask and I always answer…mainly because you make me feel so comfortable at opening up to you, and I’m sure that is the case with others. But I know… Read more

Humm, where do I start, @colleensteele? For this one, I will begin by saying that although there are many personality differences, I also find that helps us work well together.

I want to help others no matter how bad I feel. On the other hand, Manny is helpful and knows that sometimes you need to let others care for themselves. He has… Read more

As I read this, tears flow down my cheek, @colleensteele. You and Brian have raised two amazing young men. This speaks volumes to the parents that you are.

When Aidan shares, “At some point, I realized everyone has memories of childhood challenges, but everyone also has to grow up and learn to cope with their anger, or they will be… Read more

Wow, @colleensteele, thanks for sharing such a heartwarming story. I love that your mom brought some to you in WA. They certainly are resilient like you.

This was make those succulents that more special once I do buy them for my new patio. I loved reading this column and this added special touch.

@jenc when my parents moved from the family home I grew up in my mom dug up flowering succulents that she planted when I was a little girl. She replanted them at their new home and brought some out to WA for me during one of her visits out here. So I have succulents in my front yard that had grown in my yard as a child. Talk about resilience!

Thanks, @colleensteele. I do think that many of our emotions and characteristics ebb and flow. You mention acceptance, patience, and strength.

Today, patience is more lacking as I think of many tasks that I need to do. But know I will get to them one step at a time.

My new succulents on that patio will undoubtedly have much more meaning… Read more

@jenc you are definitely passionate! I also think that just like acceptance – patience and strength ebbs and flows for all of us.

I hope the succulents on your patio will hold great meaning for you now.

Such a profound piece, @colleensteele. I recall when you mentioned that you are writing about a TikTok video. Because I have only seen blips of those videos on social media from others, I thought of humor.

I love this as caregivers are resilient. Empathetic is undoubtedly you. But, strong, resident, holy, and compassionate are a few other… Read more

Oh, @colleensteele, I cannot imagine how difficult this was for you during the school year. Do you have any tips or suggestions that you learned through Cullen’s school years?

Yes, many thoughts and prayers are with our parents as they make these tough decisions this school year.

I remember the struggle deciding on when and when not to send Cullen to school during flu season. I can’t imagine how much more challenging it is now. Prayers for all the kids returning to school and for all the parents with worry on their minds.

Thank you @jenc. I’ve heard PH patients comment that they sometimes feel frustrated when referred to as strong, courageous, an inspiration, etc., because it make them feel like it’s an expectation. I think caregivers experience a similar version of this.

We are all human. We make mistakes, have emotions and can’t always give it all we’ve… Read more

Wow, another excellent column, my friend, @colleensteele! I like the analogy of Mary Poppins, and thanks, now I am singing that song, LOL.

This is an impressive piece that shares that everyone, including caregivers, is imperfect. I think that sharing this knowledge and will help other caregivers learn this early on.

Acknowledging this fact… Read more

Hi @colleensteele, I am so happy to hear that your mom is improving and cooperating with PT. She sounds like a woman who knows what she wants and doesn’t want to do. I love that, but happy that you convinced her to seek medical care and participate in PT.

Yes, the timing was good in many ways. I am happy that you were there. We all know… Read more

Thank you @jenc. There is never a perfect time for someone to get injured but if it were going to happen, when it did was perfect. So much better than if I were in WA, with no arrangements made to fly home, and find out that my mom had fallen. Not to mention, if I weren’t home, who knows how long she would have gone before finally going to… Read more

Wow, @colleensteele, this certainly brought out my tears. I know that this was a long-awaited trip, and I, too, thought that you would relax a bit and focus on yourself.

But, knowing you as I do, I knew that once you noticed an issue with mom, you jumped right back in that awesome caregiver that you are. I know as I care for my aging… Read more

LOL, @colleensteele, always been a fan of your excellent pieces.

That is OK if we are each others’ biggest fans.

Hopefully, others have read this but did not respond. I loved the pics. Corbin’s braids were beautiful. It is such a heart-touching and inspiring tribute.

Right back at ya @jenc! I think we are each others biggest fans. LOL!

@jenc thank you for the kind words. I wish I were half the woman you claim me to be. Trust me, I’m not super-anything but thank you for thinking of me that way.

I feel for you and how PH turned the tables on you. But I still see the nurse and caregiver in your. You might not be able to physically help others in the way you wish you could, but… Read more

@colleensteele, I remember last week as you told Kev and me this story; it was funny. But I can so hear you saying that.

You are the supermom and caregiver, plus an awesome advocate for those of us within the PH community. I must add a special friend to that, too.

For me, this was the opposite. I was a nurse, the caregiver in my… Read more

Yes, I agree, @colleensteele. I smiled, was tearful, and inspired while reading this awesome tribute column. I love how you do your interviews.

You offer so many different perspectives of others while making such heartwarming stories for us all to read.

I thoroughly enjoy each of your columns and always left feeling inspired or… Read more

Thank you @jen-c. I was originally going to interview Corbin’s mom for the transplant ineligibility column I wrote prior to this one. But we decided with is birthday and death anniversary approaching I would write a tribute column instead. I’m so glad that is the way I went with it. It’s a sad story but also heartwarming and inspirational. His… Read more