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    • #28919
      DeAnn R

        Privacy is a tricky thing when you rely on others to deal with some of the most intimate aspects of your life. Still, I think it’s important to be maintained at a level you’re comfortable with. So, when one of my caregivers spilled the beans about an upcoming project to my sister, I can’t help but wonder, how private are my affairs?

        It’s not a huge deal. The project isn’t top secret or anything. It’s just not far enough in the works where I’m confident it will transpire. In fact, I hesitated even telling my PCA about it. I’m working on remodeling my bathroom to make it more wheelchair friendly. Because it needs extensive work, it means I’d have to move back to Mom’s for a month or so since I can’t just run to the gas station to use their bathroom while mine isn’t functional. Therefore, I not only talked with Mom about it but also my PCA to see if she’d be willing to work over there. Moms not used to having outside caregivers in her home, but since it’s for an extended period of time it might be a good idea. Plus, I’m sure my PCA wouldn’t want to lose that many hours.

        My hesitancy to tell my sister stems from the built-in burden complex that comes with having a disability. Even though I try my darndest to overcome it, I still have those feelings. Although I have a somewhat good relationship with my sister, I don’t think she entirely understands my situation. She already thinks I rely on Mom too much. Is every other weekend and emergency backup too much? Anyway, I knew she’d have an unfavorable opinion of living with Mom for a month, so I decided not to tell her yet.

        I was shocked and dismayed when Mom told me that my sister knows about the remodel. It wasn’t hard to deduce who she heard it from. Mom didn’t tell her and only one other person knows. As I suspected my sister’s opinion on the project is less than supportive. No surprise there. What really gets my goat is that my PCA and sister were talking about me. A casual conversation fine, but how in the world would the remodel come up? If the remodel came up, what else did they talk about? Moving forward I’m going to have to be extra cautious about my discussions with my caregivers. Especially knowing my private affairs aren’t so private.

        How do you deal with privacy issues? Do you watch what you say? Or, do you make it clear what you talk about doesn’t leave the room?

      • #28931
        Alyssa Silva

          Our situations are a bit different, but I sometimes struggle with the idea that nothing is private in my life. I live with my parents so they basically know mostly everything which is fine. We have a good relationship with one another and there’s good communication. I try to stay a bit more private with my PCAs but sometimes that’s tough when they’re taking me to doctors appointments and involved in my everyday care. I’m sorry that happened to you. Situations like that have happened to me as well. It’s frustrating, to say the least.

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