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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 5 replies, 3 voices, and was last updated 5 months, 4 weeks ago by Halsey Blocher.

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    • #22268
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all had a great weekend.

      So for this week’s Motivation Monday post, I wanted to talk about being friends with our caregivers. A lot of agencies advise against this, I guess in an effort to emphasize the professionalism of caregiving. For me though, friendship and compatibility have always been essentials for me when seeking caregivers. Brianna wrote a great column about this recently.

      My caregiver Randy is one of my best friends. Like brothers, we depend on each other, and we drive each other crazy. I had him on the podcast a while ago, and just this weekend I went to a comedy show with him and his wife. I’ve maintained friendships with a few other caregivers as well.

      Do any of you have close relationships with your caregivers? 

       

    • #22284
      Alyssa Silva
      Keymaster

      For sure. When you’re working so closely with one another, it’s hard not to form some kind of bond. I’ve stayed in touch with some that have left, but many have also ghosted which stinks.

    • #22287
      Halsey Blocher
      Participant

      It’s sad that so many agencies discourage these connections. I understand that not everyone wants to have friendships from their caregivers, but it shouldn’t be frowned upon. One time one of my former agencies sent a reminder out to all the staff reminding them not to call their clients pet names like “sweetie” or “honey.” I thought that was pretty ridiculous. It seemed like they wanted people to act more like robots than caregivers. I’ve developed really close relationships with several of my caregivers (past and present), and I’m really grateful to have them as such important parts of my life.

    • #22298
      Kevin Schaefer
      Keymaster

      Yeah, I definitely had some I lost touch with. But I’ve been fortunate to have built some strong relationships as well. I also hired some friends to drive me and help me out in college, so the bonds were already there.

    • #22299
      Kevin Schaefer
      Keymaster

      Halsey, it really is unfortunate. Like I get wanting to emphasize the professionalism, but I can’t imagine the relationship without the companionship aspect. Great column on this subject too!

    • #22324
      Crystal
      Participant

      I always become pretty close to my caregivers…ok almost always. But my mom always hates that cuz she thinks that when you open up too much to them, they decide they can run all over you. Which some have. The last one we had actually lied to the police and said that my brother was being abusive to me. It caused a lot of problems. And she wasn’t the only one who did something like that either. But I’m still friends with the home health aide I had as a kid. At least I am on FB. She lives pretty far away. She was like a mom to me though. I’m adopted now but when she was my home health aide, I still lived with my birth mom who was… not a good mom at all. When I was sent to Foster Care, I wasn’t upset about losing my mom. I was upset about losing the home health aide I had. And although we just got our new home health aide last year, I really like her and we talk about some deep stuff. I know all about her daughters for example. The most important thing in my opinion is that I trust her.

    • #22333
      Halsey Blocher
      Participant

      Crystal, that’s really unfortunate that your aide did that. That’s just not right, and I will never understand why people do things like. While most people probably have experienced situations that are that extreme, letting people can cause us to get hurt sometimes. It’s one of the biggest downfalls. But when you find good, trustworthy people, those relationships can be extremely valuable. I can see why your mom worries about it though.

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