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    • #29523
      DeAnn R
      Keymaster

      When you have a disability you rely on your support system. Growing up my support system was vast. Family, friends, neighbors, and staff came together to help me get where I am today. As I age my support system is dwindling. Neighbors have moved away, family members are busy with their own lives, friends live out of town, and you know how difficult staffing is. I’m trying to find creative ways to do more with less, but I’m at a loss.

      How do you maintain a good support system? What do you do when your support system shrinks?

    • #29541
      Pamela Muhammad
      Participant

      It’s very difficult these days getting adequate care as I get older especially since covid’s epidemic 2022.  There is a shortage of caregivers because they’re getting more by the government free services or other jobs are paying higher salaries. Family members are taking care of their immediately family members, friends are far and between, so therefore many of the caregivers that the agencies hire are lazy and doesn’t have patience nor the proper skills to be a ‘good’ caregiver /pca! There’s not much that we can do except pray, strive to work with whomever is available to work!

      • #29548
        Alyssa Silva
        Keymaster

        So true Pamela 🙂

      • #29554
        DeAnn R
        Keymaster

        Yes, keep on keeping on despite the hardships. Thanks for your input Pamela.

    • #29543
      Anna
      Participant

      Mostly, I lay back and watch it shrink. I know it seems like I’m joking, and partly I am, but also I’m not. I mean I don’t think anyone can prevent or avoid this problem and all we can do is come to terms with it and make adjustments every time it becomes an issue.

      From my understanding, the process of staffing in the US is a little different from the one in Greece, but have you ever considered hiring a live-in caregiver at some point? It’s going to be a big adjustment, especially if you value your privacy as much as I do, but it’s also a good solution to many problems.

      • #29549
        Alyssa Silva
        Keymaster

        If you don’t mind me asking do you have live-in caregivers?  I’d love to hear your experience with it!

        • #29553
          Anna
          Participant

          I accidentally posted my reply to you in a new thread below and can’t fix it. Apologies for the inconvenience!

    • #29547
      Alyssa Silva
      Keymaster

      I wish I had a solution for you, but I’m also dealing with this. Since the pandemic started my sturdy support system started crumbling. Fortunately, I have my parents right now but they’re not getting any younger. It’s such a shame that (quality) caregivers are so hard to find these days.

    • #29552
      Anna
      Participant

      I’ve been having live-in caregivers for the past six years and, although I find that it suits my needs, it certainly has some drawbacks:

      First, it requires a great deal of patience and continuous effort to keep the relationship both friendly and professional. I’m sure you’re all familiar with all that jazz, but bear in mind that it is much harder to maintain a balance on a 24/7 basis.

      Second, space is a factor that needs to be taken into account. Fortunately, although I live with my parents, our house is big enough to ensure a modicum of privacy for all of us. Having said that, I sometimes miss the good old days when I still had the privilege of spending a few hours alone in the house!

      A third drawback is that you can’t have the same caregiver for too long because most of them have a personal life they can’t put on hold forever. The longest I’ve had the same PCA is 18 months, a remarkable record indeed! Of course, this is an issue only if you find training new caregivers as stressful as I do.

      Anyway, once you get used to it, I think the pros outweigh the cons. The burden of uncertainty and anxiety it took off my shoulders is priceless! Besides, I knew that -at some point- I’d probably end up with a live-in caregiver anyway, so I thought I’d better try it before it becomes an imperative and while I still have alternative options.

      Btw, can I just add how disconcerting I find the lack of skilled PCAs in the US? I mean, in Greece, the role of a PCA, as an occupation, was introduced just a few months ago when the government passed a bill regulating funding for this purpose for the first time in history. It obviously existed unofficially as a job since time immemorial, but that explains -to some extent- the lack of proper training. It’s very frustrating to hear that the situation is not much different in other countries as well.

      • #29557
        DeAnn R
        Keymaster

        Love the idea of a live-in caregiver. For the two reasons you mention though, space and patience, I don’t think it’s right for me at this time. I’m always waiting for my pa’s to come, but I can’t wait for them to leave.

        Lately I’ve been thinking about how to restructure my care plan to draw in more candidates. No luck so far.

      • #29561
        Alyssa Silva
        Keymaster

        Thank you for sharing! Sounds like there are pros and cons to this, and you just have to consider what’s best. I’m glad it works for you!! Yes, finding caregivers isn’t easy. Even when you do find them, the pay is so little (and not nearly enough) that they often don’t stay long. It’s very unfortunate.

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