Pulmonary Hypertension News Forums Forums Awareness and Advocacy What Is It Like To Be A PH Patient And A Caregiver?

  • jen-cueva

    Member
    October 27, 2021 at 7:46 pm

    Thank you both @colleensteele and @jenniferbeaty. This has me in tears, chills, and smiling at once. Wow, I a sorry that you have been through so much, Jennifer. Being a caregiver while managing your PH is challenging.

    I must say that I have been waiting to read this but was hoping for good news. For me, knowing you learned to say NO, was a huge positive.

    As a nurse, I have always been the caregiver in my family to all. I often felt guilty when I put myself above others, especially my husband, daughter, and parents. Just last year, I was still calling in meds for my patients (3 at that time), calling their doctors for them, and many other tasks that a caregiver does. This has been challenging as many days, like you, I feel out and cry.

    You can do minor tasks, but you must put yourself FIRST! This did not stop after my medical team told me to decrease stress and put my health first on multiple occasions. I was going until my body gave out. So, I am grateful to learn about your boundaries, Jennifer.

    Your mom may have been your first advocate, but it sounds like you do a fantastic job at advocating for yourself. If not, as you said, you may not be here, I am grateful.

    I hope that you know how much these interviews help so many of us in the PH community, @colleensteele. Another exceptional column that I hope many others will read.

    We can be caregivers and do simple tasks, but we must ensure that our health is the priority. As Colleen knows too well, caregivers are often at the bottom of their list.

    Such an important topic; thanks again, ladies.

  • jenniferbeaty

    Member
    October 28, 2021 at 7:20 am

    Thank you Jen Cueva for your kind words. If my story (thank you @colleensteele) helps just one person, then the experience was worth it.

    • jen-cueva

      Member
      November 1, 2021 at 2:39 pm

      Hi @jenniferbeaty, I can assure you that this will help more people than you could even imagine. Thanks again for sharing your journey.

      I hope you are taking care of yourself and doing well as expected this new week and month.

Log in to reply.