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  • Describe Your Caregiver System

    Posted by kevin-schaefer on April 22, 2019 at 3:00 pm

    When it comes to caregivers and setting up a plan of care, every person with SMA is different. Some hire personal care assistants through an agency, some have their significant other as their caregiver, etc.

    My care plan is pretty unique as well. My primary caregiver Randy has been with me for almost five years, and the majority of his pay comes through an agency. Though I also pay out of pocket for some of his hours. He is looking to move on in the next year, but I’m beyond grateful that he’s stuck with me for this long. I know it’s rare to have the same caregiver for this amount of time.

    Then on Saturday mornings, I use a different agency. They’ve sent a lot of different caregivers, but they’ve all been pretty good. I typically don’t find out who’s coming until the week of, and if it’s a new person I have to train them. Then my Dad puts me to bed on Friday and Saturday nights, and I live with my parents. I also have friends who drive me when we’re hanging out, and I’ve had a friend helping me out for the past few months. The big thing he’s been doing is driving me to physical therapy every week, which is a huge help. Since he’s about to graduate from college, I will have to find someone else. Fortunately, I have a lot of connections, and I know a few college students who could use some easy part-time work.

    Essentially, I have an army to help me. People are always astounded by how many people I know, but I tell them that it helps to have a vast network. My column for next week will be on this subject.

    What about you all? What’s your caregiver setup like? What questions do you have about acquiring caregivers?

    kevin-schaefer replied 5 years, 2 months ago 4 Members · 9 Replies
  • 9 Replies
  • ryan-berhar

    Member
    April 22, 2019 at 7:35 pm

    Mine is a lot more limited than yours. I have my mom, dad, and grandma the vast majority of the time, though others chip in occasionally. My friend has helped off and on for the past two years.

    • kevin-schaefer

      Member
      April 25, 2019 at 12:00 pm

      Are you still trying to find an agency to work with? Or have you thought about hiring students/recent graduates from a CNA program? I know it’s tough, but don’t give up. Let us know if you need any more tips.

  • halsey-blocher

    Member
    April 22, 2019 at 9:16 pm

    I use a nursing agency that allows me to recruit and hire the nurse that I want (as long as they pass a background check). I currently have three full time nurses Mon-Fri and some weekend hours. Two of them have been with me for 5+ years. I also live with my parents, so they fill in the rest with some help from my grandma.

    • kevin-schaefer

      Member
      April 25, 2019 at 12:04 pm

      That’s great. Yeah for my next column, I wrote about how it’s good to have as many caregivers as possible, or at least to have a good team. Have you used the same agency for a while? I’ve used several different ones in the past few years.

      • halsey-blocher

        Member
        April 25, 2019 at 9:13 pm

        I’ve been with this agency for 3 years. Unfortunately, I went through 4 other agencies in 5 years before finding this one. It’s been a really good fit.

  • patrick-lenihan

    Member
    April 23, 2019 at 10:28 pm

    I use a combination of agencies and I.P.’s . I have 6 people total working with me every week. I have some body come in for a couple of hours every morning to get me up, showered and dressed. They also prep my breakfast, do some light housework and prep my lunch if I am eating at home. My s/o of 20 years makes my dinner and puts me to bed most nights. When she needs some respite time,  I have an I.P. come in to put me to bed and I either order takeout delivery or I wheel  down to the super market or one of the 30+ restaurants, pubs and cafes that are walking distance from our house. We live in a very walkable neighborhood with excellent public transit so the only time I like to use our van is if we are going to be out after the buses stop running or if we are going out of town. I like having many caregivers because if one is sick or goes on vacation, I always have a substitute available to fill in. My parents and siblings live 3000 miles away, so they obviously don’t help with care giving.

    • kevin-schaefer

      Member
      April 25, 2019 at 12:13 pm

      That’s really cool. And that’s great that you have a good public transportation system.

      For transportation, I have two accessible vans. One is a dodge caravan that we’ve had since 2005, and amazingly it still works. Friends drive me around in this one when we’re hanging out, and I also hire friends to drive me in this one to my weekly physical therapy appointments.

      The other one we have is an MV1 from Mobility Ventures. We bought this one in 2016, and it’s become our primary van that my family uses. They don’t manufacture this model anymore, but it’s a great vehicle, one that’s specifically designed for wheelchair-users. Once we got this one, my parents just let me pretty much take ownership of the dodge. I pay gas and repairs for it, and it works great for when I’m just hanging out with friends or going on day trips.

      • patrick-lenihan

        Member
        April 27, 2019 at 5:24 pm

        I have 2006 Buick Terraza with a Braun conversion. It is cool that you have an MV1. That is quite a sweet rig. I remember reading about those when they first came out. They were initially being marketed to cab companies in NYC and to public transit authorities in smaller communities as a more affordable alternative to larger paratransit buses but never really caught on in either market.

      • kevin-schaefer

        Member
        April 29, 2019 at 10:43 am

        It’s an amazing vehicle. I wish it had caught on more as well, and that it was still being manufactured. The best feature it has is the two electrical lifts that it comes with. One lift is shorter than other, which is really convenient for when I’m stuck in a tight parking spot.

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