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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 2 replies, 2 voices, and was last updated 6 months, 3 weeks ago by Halsey Blocher.

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    • #21992
      DeAnn R
      Keymaster

      Yes, I know this is a recurring topic.  With that said It’s also an important one.  It’s been almost 3 years since my last hospitalization and I want to keep it that way.  Monday a PCA called out with a sick kid (a different one than came to work with a cold.)  The next day she called out again because her kid was still sick and she felt unwell.  I guess they both tested positive for Influenza B and were given Tamiflu.  Therefore she’s out today as well.  When would you allow her back?  I’m thinking next week?  My PCA filling in is skeptical that she’s truly ill as she calls out rather frequently because her kid or herself is sick.  Although I can see where it might seem that way I really don’t think she’s lying.  That’s why I’d like to err on the side of caution and tell her to stay home and recuperate this week.  Does that sound reasonable?  In the past I’ve given my fill in PCA a gift card to thank her for filling in.  Ideas on amount or place considering a limited budget?  Being surrounded by sickness is really getting old.

    • #21994
      Alyssa Silva
      Keymaster

      Ugh I hear ya. Everyone around me is getting sick too, and I’m over it.

      Typically, I wait 7-10 days before having a caregiver return to work. However, the flu is no joke. One of my nurses has been out for two weeks because she’s so sick with the flu. Even if they’re not telling the truth, it’s not a matter to take lightly.

      Maybe re-evaluate after 7 days? See if she still has symptoms? As far as the fill-in caregiver goes, there are several things you could do! A small gesture that always bodes well is venmo-ing someone just enough for a cup of coffee and writing “have a coffee on me today” in the message. If they don’t have venmo, Starbucks allows you to send e-gift card. It’s simple but sure to brighten someone’s day and show that you care.

      Another route is something like a DoorDash or Uber Eats e-gift card. Because they’re busy helping you with your needs they may not have time to go home and make dinner. Delivery is always a great fallback option.

    • #21997
      Halsey Blocher
      Participant

      Generally, if someone is sick enough to be on a antibiotic, I’d probably say 3 days minimum. I know that’s less than most people would say, but it’s can be tricky for me too go much longer than that without them. I don’t have a very big staff, so if someone else isn’t available, my parents have to stay home from work. But if you can manage without her for a bit, I don’t think it would be a bad idea to wait longer than that. Like Alyssa said, the flu is no joke. You don’t want to mess around with that.

      I like the idea of giving your fill in a gift card. Caregivers should always know that they are appreciated, and she should no that her extra help is recognized. I wouldn’t go too high on the amount. I think $25ish would be fine. That’s usually what we do. We sometimes do gas cards for people who have been working extra since they’re driving more to get to our house. And of course, if you know that there’s a restaurant or store that she really likes, that’s always good. I have a nurse who loves Panera so we usually get one for there.

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