When the Caregiver Is The Patient

This topic contains 3 replies, has 2 voices, and was last updated by  Brittany Foster 2 months, 3 weeks ago.

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  • #18633
     Colleen Steele 
    Keymaster

    As caregiver/family member to someone with PH, how well do you handle becoming a patient yourself? I have had some health issues over the years, most recently kidney stones. I experienced a small taste of what my son goes through while dealing with the excruciating wait at the ER, having to explain my symptoms numerous times, and undergoing uncomfortable tests and eventually surgery.

    What I found to be the most difficult is being constrained to a hospital bed and at the mercy of others. As a mom to a PHer and transplant recipient I have spent a lot of time in the hospital with him, but at least I could get up and move around. I could take a walk to the cafeteria or step out to make a phone call. I had a good understanding of what it has been like for him but my eyes were opened wider after experiencing health issues of my own.

  • #18671
     Brittany Foster 
    Keymaster

    I can only imagine how physically and emotionally difficult that was for you. It is weird to be on the “other side” of things and getting a glimpse into what we go through. I wouldn’t wish the “patient” side on anyone and I’m sure you feel the same way as a caregiver. It is also hard to see the caregiver side of things (like my recent experience with my nephew) and having to be on the other side of an operation. It was probably the worst anxiety I’ve ever felt. It was heartbreak, helplessness, and anxiety all in one and it was just so unsettling to feel like there was nothing I could do in the moment.

    But you are right that it is HARD to be a patient especially when you don’t have the freedom to just get up and do what you want. It’s like you feel too institutionalized and I never like that feeling of feeling like I don’t have control over what happens or only have control over certain things.

    • #18690
       Colleen Steele 
      Keymaster

      Thanks Brittany. I also feel stressed whenever I’m dealing with my own health, especially when it interferes with caring for not just my PHer, but my whole family. I don’t know whether it’s sweet or sad, but whenever I am sick my son goes above and beyond trying to take care of me. My guess is that it makes him feel good being on the other end for a change and help me.

      • #18707
         Brittany Foster 
        Keymaster

        It definitely made me feel way more in control and does make me feel more in control when other people are the patient (including my family members) . I NEVER like to see anyone I care about in such a vulnerable state or really sick, but knowing that I know what it’s like by now and can help them out the best I can really makes me feel more in control of the situation. It’s like the tables turn and I get to be the one to advocate for someone else and take notes and make sure everyone understands what’s going on. It’s a different perspective seeing it through the caregiver eyes that’s for sure.

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