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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.


  • This topic has 2 replies, 2 voices, and was last updated 5 days, 16 hours ago by Alyssa Silva.

    • Author
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      • #21878
        DeAnn R
        Keymaster

        With the risk of dating myself, do you remember the game Operation? You know the one that buzzes if you’re not steady plucking bones & organs from the “patent?” Because of my dexterity that game isn’t my forte, but it crossed my mind recently. My PCA came to work and this time admitted when I questioned her stuffiness she indeed has a cold. Usually she claims allergies. Although I had her wash her hands often, she proceeded to touch her face numerous times. Totally unaware of her actions. Operation popped into my head because every time she touched her face I wish I had a buzzer. I’m sure she’d be offended if I bring it up. She already wasn’t crazy about the extra hand washing. What do you guys do when your PCA comes to work sick? Without implementing a new game, PCA Operation, I’m kind of at a loss of what to do. Oddly enough she knows firsthand how sick I can get from a simple cold.

      • #21930
        Halsey Blocher
        Participant

        I was never any good at that game either. I agree that PCA probably wouldn’t appreciate that, but it would be kind of funny.

        Its unfortunate that she’s choosing to knowingly endanger your health – especially this time of the year. You might just try sitting her down for an honest conversation. Share your concerns in a respectful way and let her know that you don’t feel like she prioritizing your safety enough. Obviously she needs to make money, but not at the expense of your health or possibly even your life. As your caregiver, she has certain level of responsibility to protect you from these kinds of things. You can choose to put yourself in situations where you could potentially get sick, but it’s not okay for someone else to choose to put you in that situation. You may even mention that you think she needs to consider staying home even if she thinks it’s just allergies since it’s hard to know for sure and you’re not comfortable taking the chance.

      • #21947
        Alyssa Silva
        Keymaster

        Ugh.  I’m sorry she put you in that predicament DeAnn.  That has happened to me as well,  but my situation is a little different. I live with my parents so if a caregiver shows up sick, we have the option to send them home. Like Halsey said, it isn’t fair for someone to put you in that situation. Having a talk with her would probably be best. And if you can afford to be without her help, I would definitely not hesitate in sending her home. By showing up to work (and ultimately get paid), she’s putting her needs first. So you deserve to do the same for yourself.

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