Public Group
active 2 weeks, 3 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
Are You A Caregiver Who Struggles With Brain Fog? in the forum PH Caregivers, Family Members & Spouses 2 weeks, 3 days 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 2 weeks, 3 days 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 1 month, 2 weeks 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 2 months, 1 week 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 2 months, 1 week 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 2 months, 1 week 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 3 months 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 3 months 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 4 months, 3 weeks 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 4 months, 3 weeks 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 4 months, 3 weeks 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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Colleen Steele replied to the topic
The Stresses of Being a Caregiver in the forum PH Caregivers, Family Members & Spouses 4 months, 4 weeks ago
@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 full…[Read more]
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Colleen Steele replied to the topic
Caregivers, What Are The Therapeutic Benefits of YOU Owing A Pet? in the forum PH Caregivers, Family Members & Spouses 5 months, 1 week ago
@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!
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Jen Cueva replied to the topic
Caregivers, What Are The Therapeutic Benefits of YOU Owing A Pet? in the forum PH Caregivers, Family Members & Spouses 5 months, 1 week ago
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.
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Colleen Steele replied to the topic
Caregivers, What Are The Therapeutic Benefits of YOU Owing A Pet? in the forum PH Caregivers, Family Members & Spouses 5 months, 1 week ago
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:
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Jen Cueva replied to the topic
Caregivers, What Are The Therapeutic Benefits of YOU Owing A Pet? in the forum PH Caregivers, Family Members & Spouses 5 months, 1 week ago
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 crying…[Read more]
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V.R. Peterson replied to the topic
Caregivers and Patients – How Do You Deal with Differences In Personality? in the forum PH Caregivers, Family Members & Spouses 5 months, 2 weeks ago
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 to…[Read more]
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@mamabear007 your response is a perfect example of how stressful parenting can be for us compared to those raising healthy children. While they are upset that their children aren’t updating them about school, we are stressing whether they are fully updating us about their health!
I imagine you lost a lot of sleep worrying about your son. My…
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@colleensteele, my son definitely has his father’s sense of humor. As for sleep, I do get a lot more now than I did before his surgery. My blood pressure is also lower now. 🙂
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Colleen Steele replied to the topic
Caregivers and Patients – How Do You Deal with Differences In Personality? in the forum PH Caregivers, Family Members & Spouses 5 months, 2 weeks ago
@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 you…[Read more]
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Jen Cueva replied to the topic
Caregivers and Patients – How Do You Deal with Differences In Personality? in the forum PH Caregivers, Family Members & Spouses 5 months, 2 weeks ago
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 boundaries…[Read more]
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Jen Cueva replied to the topic
Do You Worry About The Adult Your Healthy Child Will Become? in the forum PH Caregivers, Family Members & Spouses 6 months, 2 weeks ago
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 grumpy,…[Read more]
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