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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 5 replies, 4 voices, and was last updated 1 month ago by Halsey Blocher.

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      • #21283
        Alyssa Silva
        Keymaster

        Currently, I alternate between two PCAs that come Mon-Fri, and within the last month, they have both been sick at different times. The type of illness determines how long they can’t come to work, but typically I wait 3 days after a stomach bug, 7-10 days for a cold, and 2ish weeks if it’s the flu or something that lingers for more than 10 days.

        That being said, it’s difficult for me to draw that line. While being a PCA isn’t their only source of income, it’s still a cut in pay. They know this going into the job, and despite knowing my main priority is my health, I still feel bad about taking away hours.

        How do you handle this? Do you offer them extra hours when they return? Do you suggest running errands and such so they can still clock in but not come in close contact with you?

        Would love to hear your thoughts.

      • #21285
        Tracy Odell
        Participant

        If someone has hurt themselves say with a serious back sprain and the call in sick, I don’t let them return until they produce a doctor’s note confirming it is safe for them to resume their normal duties.

        But colds or flu – I let them come to work if they feel up to it. Because I can’t reach to touch taps, doorknobs, etc. I don’t pick up anyone else’s germs. If they are sneezy and drippy, I simply keep masks on hand for their use and my protection. They need to cover coughs and sneezes with their elbow, not their hands.  Handwashing is important after any nose-blowing. I educate my attendants (who are not usually trained as a PSW) about how a cold for them can lead to pneumonia for me so they take these “fussy” requests of mine seriously.

        I cannot make up lost hours for them because I have to have another attendant do their shift. Some things are contagious before the person has symptoms, so by the time I would make them book off, it’s too late anyway. Then we are both inconvenienced.

        • #21292
          Alyssa Silva
          Keymaster

          Thanks for your input, Tracy. Even on a healthy day I typically ask that they take the same handwashing, sneezing, and coughing precautions. And I never leave the house without hand sanitizer.

      • #21286
        DeAnn R
        Keymaster

        I don’t really have the option of having mandatory days off for illness. They know that if they’re sick or not feeling well I’d prefer them not to come though. Unfortunately I think some take advantage of that. Then I have ones that come sniffling and sneezing that swear they’re “fine.” As far as make up time my general rule is that if they work out a swap with another PCA that’s fine, but if I’m finding the replacement I’m not working in makeup hours. If I’m the one cancelling I might be apt to offer them another shift, but rarely do they take me up on it.

        • #21294
          Alyssa Silva
          Keymaster

          Or how about the ones that say it’s just “allergies?!” I cringe every time but have to respect what they’re telling me. More often than not, it’s a cold…

          I, too, try to see if my assistants can swap shifts if someone gets sick. But, if I’m the one canceling I’ll make the extra effort to give them hours elsewhere.

      • #21300
        Halsey Blocher
        Participant

        Fortunately my nurses are very understanding of my need to avoid germs, so they always let me know if they are sick in case I want them to stay home. It’s not a frequent occurrence. When it does happen, I let them determine when they think they can come back without passing anything to me. I always have masks and large amounts of hand sanitizer. I do try to let them pick up more shifts when they come back if they want to. I don’t always have extra shifts available but I try to offer them when I do. Neither of my nurses have other jobs so I try to balance my needs and theirs.

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