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How have your family dynamics evolved in the face of PH?
Living with a rare disease like PH impacts the individual and the entire family. Adjusting schedules for treatments and appointments is necessary.
A strong and supportive family is something I’m grateful for. Effective communication and being open are priorities. On tough days, my daughter KK reminds me to take a break and rest.
How have your family dynamics evolved in the face of PH? Please share your experiences. -
7 Replies
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This topic is something that I think many will relate to. For me, the way our family dynamics changed has been challenging. It’s the toughest when my daughter, KK, takes care of me. I’m the mom, but learning to allow others including her to help me, can benefit us all.
I’ve also now seen my role in my extended family shift, but that can also be partly due to age. 😉
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Jen, like you I struggle mostly with the switch of being a caregiver to being cared for in many ways. My husband’s health is not good lately (which is a change in dynamics as well), so I find myself relying more and more on my daughter. I worry about this switch of roles. She is an amazing woman and seems derermined to take on this new role, even with a husband and 4 kids to care for. She tells me “Mama, you took care of me for 18 plus years. Now it’s my turn.” I guess part of this is age related, but I was working full time when I got sick. Everything just happened so fast.
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Hi @DeLois Tweedy, it’s challenging when family dynamics change. I hate to hear about your husband’s poor health. And you’re right; that also causes a shift in dynamics and roles.
Your daughter sounds like a blessing, as I consider mine. Funny story: about an hour ago, we talked about this topic and how hard it can sometimes be. My daughter said pretty much the same thing as your daughter. That in itself makes it a bit smoother. Some have adult children who don’t participate or want to care for their loved ones.
I, too, worked full-time in nursing when I was diagnosed. Our lives changed so fast!
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My husband has had a very hard time with accepting PH in our lives. At first he was not supportive at all. He would buy me whatever equipment I needed, but the day to day caring was not happening. He didn’t go with me to doctor appointments. He expected me to do all that I used to do. He was afraid I was going to die soon, and he would be left alone. Now he is involved in the every day needs, helps out without being asked and goes to doctor appointments. His actions make a world of difference to my health. Those of you that have good caregivers, be thankful. They are like gold.
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Hi, @Debbie Moore; it’s not unusual that a spouse or family member is not on board initially. Many factors can influence this. I’ve found some are in denial and frightened. It’s more challenging when the spouse runs a business and does so much, like you. I also worked full time and OT in nursing, so it was new for “the nurse” in the family, the mom and wife, aka nurturer.
Rare disease is not for the weak and takes a village, but our supportive caregivers are the true MVPs, as I always tell my medical team.
Thanks so much for sharing, Debbie. I’m grateful that your hubby has been more supportive. Fear can provoke so many emotions, as we all know. Our caregivers genuinely do make a world of difference in our lives.
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Hey y’all!
I’ve just published a new column on the impact of PH on relationships, primarily marriages. You might find it insightful if you have a spouse, partner, or significant other. Check it out below.
https://pulmonaryhypertensionnews.com/columns/marriage-looks-different-when-living-with-rare-disease
I’m also eager to hear how you and your partner tackle PH. Let’s get both perspectives! What’s your biggest challenge, and how have you navigated it to strengthen your relationship? Share your experiences!
pulmonaryhypertensionnews.com
Marriage looks a little different when living with a rare disease
Columnist Jen Cueva says that she and her husband, Manny, make a great team, which is crucial when living with a rare disease.
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My PH was just too much for my husband. He was doing such a good job, but I guess it was more than he was willing to give. After 41 years of marriage, he left me. We are in the process of getting a divorce. Not only can I not breathe, my heart is broken as well. My kids have stepped in are doing whatever I need them to do. I’m so thankful for them. The surgery I have in August, he doesn’t know about, nor do I think he would care. It does feel strange going through it without him. But I’ll be okay. Family and friends have given me total support. I am blessed.
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