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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 3 months ago by Alyssa Silva.

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    • #23427
      Alyssa Silva
      Keymaster

      The saying, ”you can’t pour from an empty cup,” couldn’t ring more true.

      There’s a fine line between helping others and experiencing burnout. And this doesn’t just apply to caregiving. I have a tendency to put others’ needs before my own and have experienced the repercussions of it. In some ways, if I don’t put myself first and tend to my own needs, I end up doing a disservice to not only myself but to others too.

      I currently don’t have caregivers coming during the pandemic, so my mother has added greater responsibility to her plate. She is more than happy to help, but I can tell sometimes she gets overwhelmed between taking care of the house, herself, and me.

      I try to encourage her to go for a daily walk while my dad is available to help in between work meetings. I also ask her to do things like watch a show or lay in the sun with me— anything to get her to pause and recharge her batteries.

      As caregivers, how do you manage this balance?

    • #23435
      DeAnn R
      Keymaster

      That’s part of the reason I needed to keep my caregiver routine during all this.  I do go to Mom’s every other weekend, but I know that’s about the limit for her.  We would probably drive each other nuts if I stayed longer.  As long as you’re both aware of how things are going I think you’ll be fine.  It is a balance though.  When I’m with Mom there are comforts I forgo just to make it easier.

      I’m having issues with one of my long-term pca’s.  I’m not sure if it’s burnout or what.  She’s just getting snippy about things now & then.  Like when I had her reposition the sling she made a snarky comment because she thought it was fine.  Hopefully it’s just the stress of the times because she does a great job, but it’s kind of annoying.  I either have to not say anything even though it can be done better or deal with her snarky comments.

    • #23440
      Alyssa Silva
      Keymaster

      I’m sorry you’re having some issues with her. I’ve been there, too, and it’s challenging to manage. Like you don’t want to rock the boat because your livelihood relies on their assistance but that kind of behavior is unacceptable on the job. I wish I had some solid advice for you. Sometimes I will call them out on their snark and play their game. I can be sassy, and I use that to my benefit in situations like these on occasion. 🙂 Like you said, though, hopefully it’s just the stress of everything going on right now.

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