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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 3 replies, 3 voices, and was last updated 6 months, 3 weeks ago by Alyssa Silva.

  • Author
    • #21950
      Alyssa Silva

      Finding the right caregivers can be like searching for a needle in a haystack. I’ve been there many times.

      Typically my mom and I like to start out by using word of mouth. We feel as though the chance of hiring someone that a friend or family member already knows gives us a better probability of it working out well.

      What resources do you use to hire caregivers? Ads? Websites? Social media? Would love to know for the future.

    • #21998
      Halsey Blocher

      We often do the same things. We encourage our friends to share and ask people that we know personally. We also started a Facebook page. It has a simple job application attached so they can find out if they are an eligible candidate. We’ve tried ads on a few other sites as well. Sadly, advertising isn’t usually cheap. The hardest part for us is that I have to have RNs or LPNs because of the level of care that I need. It narrows the pool of people a bit.

    • #22050
      Kip Troendle

      It’s probably safe to assume parents are the primary caregivers to people with SMA; even into adulthood.  I’m 50 years of age and my mother is still my primary at 70 years of age.  I have home healthcare come in week mornings to get me up, and private help on weekends and some evenings.  Private help was found by word-of-mouth.  One area I found good help was our local community college where students are looking to obtain their CNA or higher.  They typically are excellent candidates who are young, not yet married or have children, and are looking to earn extra money.  If you find one, you’ll usually find another.  That’s how it evolved for me anyway.  They develop friendships in class and can suggest fill-ins for when they can’t make it.  I’m trying to move out on my own, but finding good reliable help is very difficult.  Especially when it comes to overnight stay.  Agencies really sock it to someone needing overnight help.  I’m going to try colleges in a nearby city, but it’s going to be like finding a needle in the haystack.  Free rent and utilities plus earning some extra spending money should be enticing, but we’ll see.  If it doesn’t work out after a month or two, and my overnight quits, I’m in trouble.  I’m typically good at problem solving, but this has been my most difficult.

    • #22052
      Alyssa Silva

      Kip, that last sentence speaks VOLUMES to me. Trying to successfully manage caregivers and scheduling is not an easy feat. Fortunately, my parents are still my main caregivers as well, but they are also getting up there in age. Asking for potential CNAs and/or nursing students at a local college is great advice. Definitely something to keep in mind!

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