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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 1 reply, 1 voice, and was last updated 1 month ago by Halsey Blocher.

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      • #21692
        Alyssa Silva
        Keymaster

        A new caregiver started working third shift with me as of December 1st which only means one thing: for the last 12 days, I’ve been struggling during the day.

        She seems great, she really does. But, as with any new caregiver, it takes a good month for them to learn the ropes. Night shifts mean I have to physically wake up and tell them what to do, how to reposition me, what to do when my BiPAP alarms, etc. In other words, I’m not getting much sleep.

        I’m a light sleeper to begin with, but I’m really not getting much shut-eye these days. As a result, I feel pretty weak during the day. I’m grumpy, lazy, and have very little motivation to do much of anything other than watch Netflix. I know this is par for the course, but I’ve had night caregivers come and go all year long that I’m just at my wit’s end right now. That being said, I am hopeful about this new one.

        Any tips on how to stay afloat during the day? Take naps? Drink a whole pot of coffee? Take a cold shower to wake me up? 🙂

      • #21708
        Halsey Blocher
        Participant

        It can definitely take time for new caregivers to learn everything, and it requires a lot of patience on our parts. I would encourage the coffee idea, and afternoon naps could definitely be beneficial, at least until she gets the hang of it. Don’t take cold showers though. There’s no need to torture yourself. I would also try sleeping in some if you can. Maybe also try writing a list of things for her about what she needs to do in certain situations for her to read over. Sort of like flash cards. And if there are times where she doesn’t need to wake you even if it maybe seems like she does, you could include those. For example, you mentioned your bipap alarms. My vent also alarms at night and some people think they need to come figure out what’s wrong immediately. But sometimes it will alarm once and then stop for the rest of the night without anyone having to do anything. Once they understand this, they won’t come into my room and wake me up as much. Same thing if I cough. One cough doesn’t mean rushing in and asking me 20 questions to make sure I’m okay.

        I hope she gets the hang of it soon and you start getting more sleep!

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