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A Story about my life while living in a nursing home in early 1997 to late 1998

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  • A Story about my life while living in a nursing home in early 1997 to late 1998

    The following link is a blog about a story I had written about living in a nursing home after my spinal cord injury from automobile accident in 1996.

    It is now 2011, but the below story was written in 2003 a brief explanation of what it was like living in a nursing home after my car accident when I became a quadriplegic, got out of the hospital and had nowhere to live. I wrote this story the 1st time I ever gave a testimony to the State of Ohio legislators. Actually, this was one of the early times of my advocating for people with disabilities since I had been injured. I got involved as a member of the Ohio Olmstead Task Force, a grassroots coalition of people with disabilities of all ages, family members, advocates and organizations advocating together for the right to live, work and participate
    in their communities........ (click link above for more)

  • #2
    Betsy, I was so thrilled when I saw this posted. Several years back you posted a blog about your time in a nursing home and your fight to get out. I still have it bookmarked on my main computer and was disappointed a year or so ago when I tried to retrieve your blog to no avail. I needed so much to read it over and over again so as to appreciate what I have

    I truly am not trying to be condescending. I think so highly of you. I haven't read your link yet to see if it is the same as the years past, since I am in bed reading and writing this on my iPhone. I will definitely read it tomorrow and look to see what year the old thread is dated.

    You have done so much with so little personal support and in more ways than you know, you have definitely made a difference.

    Can't wait to read all that you have here.


    • #3
      Very good piece Betsy. I already had a pretty good idea of the things you faced. My daughter is a charge nurse at a local nursing home. I can't imagine being stuck in a nursing home when there truly isn't a need for it. Which also happens to many of our elderly, just for the lack of help.


      • #4
        I remember when I was in rehab thinking that if rehab sucks this much how bad a nursing home must be. My roommate was a stroke victim who had Broca's aphasia (the only word he could say was "seven", it was funny for about the first minute then it was sad). I had been there a couple weeks when I noticed he would brush the sheet on his bed for about 5 minutes every night. He had other odd traits so initially I didn't think anything of it. I eventually realized that the staff never changed his bed sheets (they changed mine every couple days). Basically because he couldn't talk (read complain) they just were lazy and didn't do anything for the guy. I brought it up to the head nurse, which turned out to then get all the assistants pissed at me for calling them out for not doing their jobs. I was still pretty messed up from my accident (along with my SCI the left side of my body had numerous broken bones) and needed help getting out of bed. After my complaint it would often take up to an hour to get someone to help me out of bed, which lead to numerous "accidents" that could have been prevented if I had been able to get to the bathroom. A low cost nursing home must be 10 times worse, I can't imagine as a 21 year old having to spend a year and a half in one. You must have felt like you had been released from prison when you finally got out of there.


        • #5
          I admire anyone who can endure what you did. I have known a few young people with disabilities who ended up in nursing homes. A few made it out, some with the help of the Independent Living Council, but others did not. It is shameful the way our society treats people. Needless to say, most of these nursing homes are little more than dumping grounds. Avoiding that fate has been one of the driving forces in my life. Now that I am getting old, the fear of ending up in one of those places is growing. Thanks for your advocacy efforts. We all need to continue the fight.
          You will find a guide to preserving shoulder function @

          See my personal webpage @


          • #6
            thanks all its nice of you to say, but I'm just adding to others experiences like mine. Most aren't as lucky as I was. people who know me today, would never know that I ever lived that way as my life is very different now.

            t8, its true, like your friend who couldnt speak for himself, this is the sad reality. even some home health aides, they love to have control, and try to get out of doing things. I'll never forget at the nursing home when I found out the night aides would be doing their rounds, and they would put the large fabric bed pads you lay on between the residents legs so they wouldn't have to clean them up if they were incontinent, ect. and leave it for the morning aides. and yes, if you stood up for someone, it would be taken out against you.

            I learned the word ombudsman real quick, so that was generally their motivating factor, and worked for me, but was always met with resistance. i used to stay up real late at night, and go sit under the stars in the sky because it was time I could think and be away from it all for a bit. because sometimes it felt like a mental institution, where everything was controlled. or so they thought. one time I handed the physical therapist at the home a paper on autonomic dysreflexia that I had got in rehab, and it wasnt one week later the visiting nursing home doctor handed it to me. i asked him where he got it, he said, the physical therapist! ha ha, I laughed, I said, I gave that to them! of course, I never got therapy either. i do have some good stories like we found two dogs in the ditch near the home, and I helped to turn them in to therapy dogs for the residents dogs names were "Jack & Jill". Lots of good stories from the residents, I used to sit on the porch and just talk and talk to some. of course, you always had nursing home gossip, that never ended lol. older adults are really good at that lol.

            the first day I moved in, residents disliked me "the young girl", but when I was leaving that year and a half later, they gave me a going away party, and my neighbor across the hall, Leona said to me, "I know you have to go and move on, but I don't want you to."

            I don't think I'll ever forget what she said.


            • #7
              That's an amazing story lizbv. You are a very strong person. I'm glad things worked out and your life is so different and better now, due to your own tenacity.
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              • #8
                Very important and moving post. thank you for sharing again.
                "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” ~Carlos Castaneda


                • #9
                  A deeply moving and very important story Betsy.

                  The amount of young people in nursing homes is still much too high twelve years after the Supreme court's Olmstead decision. The institutional bias toward putting people in nursing homes has gotten worse with budget cuts to important, cost effective, community based care delivery systems.

                  Thanks for sharing.



                  • #10
                    Wow, that's quite a journey you've been on Lizbv, am glad you've done well for yourself, you should be very proud.
                    A dolla makes me holla, honey boo boo! - borrowed from Honey boo boo child


                    • #11
                      Betsy, thank you for sharing your story. I am glad you got out, e.g. nursing home.
                      The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                      --General George Patton

                      Complex problems need to be solved collectively.
                      ––Paul Nussbaum


                      • #12
                        Looking forward to reading this. Still remember meeting you in the hallway of a DC hotel! I should get out the pic of us and Trooper.

                        Cannot imagine being in a NH so young. You really fought your way out. Sad that many don't.
                        Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash


                        • #13
                          You rock!
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                          • #14
                            Thanks for taking the time to read everyone. November, I enjoyed the photo of trooper's front paws in your hands lol.