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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 4 replies, 2 voices, and was last updated 7 months ago by Alyssa Silva.

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    • #21855
      Alyssa Silva
      Keymaster

      Managing caregivers can often feel like a full-time job, but there are tips and tricks to make managing, well, manageable.

      What are some ideas you implement in the day-to-day that helps streamline this?

      For example, do you have a list of daily duties for your caregivers to follow? What are they?

      Do you have a form of communication (ie. text, slack, email etc.) where you and your caregivers can coordinate with one another if someone can’t make a shift?

      Are there a set of rules set in place— like frequent hand-washing, giving more than 24 hours cancellation notice when applicable, etc?

      What would you suggest?

    • #21905
      Halsey Blocher
      Participant

      My nurses have detailed lists of things to do during their shifts, both for daily things and less frequent tasks. They’ve basically made a “chore chart” of sorts for themselves. Whenever one of them does something on the chart, they put their name next to it so that it doesn’t accidentally get done twice. I know what all is on this chart as well so that we can discuss adding thing or changing them when needed.

      As far as communication goes, we mostly use text or email. They usually use email to send their availability, and text for more urgent thing like unexpected changes.

      One thing that we’ve started doing that helps avoid scheduling confusion is asking them to check their schedules every Sunday. We also send reminders to check it on that day. We build a rough template of their schedules a month in advance, but it is always finalized by then. If we need to make a change after that, we send them a message to let them know/make sure they’re okay with the change.

    • #21907
      Alyssa Silva
      Keymaster

      Sounds like you guys are super organized— that’s awesome! We basically just have a running list for my night nurses as they acclimate to the job. We even take pictures of me and how I liked to be positioned in bed because comfort is KEY to a good night’s sleep.

      Daytime help is basically a go-with-the-flow kinda deal. Of course, there are set tasks every day, but what’s on my daily schedule will vary so too much structure isn’t effective.

    • #21929
      Halsey Blocher
      Participant

      I definitely agree about the day needing to be more go with the flow. The lists for that are usually smaller things washing the sheets weekly, doing my dishes, or changing the vent filters. We try to plan more time consuming things for days that I know will be more relaxed.

      I really like the picture idea! I might have to try that sometime. You could also do that to help people know where to put things in your room.

    • #21941
      Alyssa Silva
      Keymaster

      Yes that’s another great idea! Technology really makes our lives so much easier. At this time of year when I don’t want to head out to stores during cold and flu season, I’ll even send my PCAs out to get what I need while facetiming them, so it’s like I’m actually shopping— just without the exposure to germs haha.

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