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I'm a quad, and I need advice on living at home.

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    #16
    I am a quad and live by myself. The government provides attendants to help me for 4 hours in the morning and 4 hours in the evening. She leaves at 10pm and I spend the night in bed until another comes in a 8am. Chance of problems are small as long as someone showes up.

    Cheaper than gov paying for NH.
    C 5/6 Comp.
    No Tri's or hand function.

    Far better it is to try mighty things, to win glorious triumphs, even though checkered by failure. Than to take rank with those poor spirits who neither enjoy much or suffer much, because they live in the grey twilight that knows neither victory or defeat.

    Teddy Roosevelt

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      #17
      i'm c4/5 compltete and have been living alone many years. run some ad's, do some back ground checks on them, mine come 3 times daily, i am by myself at night, become close friends with nieghbors, voice activated phone.

      it's tough but doable.
      http://justadollarplease.org/

      2010 SCINet Clinical Trial Support Squad Member

      "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

      .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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        #18
        I am now living on my own. I found help through a home health agency.

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          #19
          When spouse feels he tired of dealing with disability, but still loves you
          I am a quad level C6, married 30 years, in chair for 24 years. Is there any other couples that are experiencing struggles as to my disability after all the years of being married. We have overcome so many obstacles and challenges in our lives together. He is sometimes feeling he is done with the dealing with the disability. He has also been my part time cae giver. He still loves me very much but is at a point where he is wondering "what about me" Can he continue living with me and all the barriers for the rest of his life? He misses the able bodied me and still wishes he could do things with me together that we used to do. He has chosen not to do things because I can't experience it with him. He says he doesn't resent me in any way. But he does resent the chair "said our therapist". How can I help him. He is so torn he feels he is damned if he leaves and damned if he stays. If anyone can help or your spouse has gone or is going through this we really need help.

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            #20
            Originally posted by Willyg View Post
            I am now living on my own. I found help through a home health agency.
            Great!
            Get involved in politics as if your life depended on it, because it does. -- Justin Dart

            I shall not tolerate ignorance or hate speech on this site.

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              #21
              quad living alone here

              i been living alone pretty much for bout 14 yrs. now...its not as bad as i thought. i have an aide come up few nights a week till 11;30 then i'm off to sleep...a couple nites an aide stays over.
              i have a digital touch pad door lock on front door thats battery operated,,,larsen.(i change batteries 1 x year)..a 4 didgit code unlocks door,,,that way i dont have to hand out keys..you can change code whenever u feel need too. i also have,for backup,a key in a lockbox thats mounted near front door,,in case door lock malfunctions. google x-10.
              i have an intercom by front door and one on wall above bed headboard with a string i can pull to see who's at door. if i want to let them in,i say the code.
              i have many lights,esp. front door and spotlights,that i operate with a wirless x-10 remote. inexpensive way to have control over lighting,that i keep on bed tray,,,along with remotes,phone,incl.cell and 2 sippy bottles of water.
              i let our county 911 to inform my situation in case i dial 911,,,they have the code and know what room i'm in...also,2 neighbors.u may want to look into a lifeline remote pendant.
              you could also install a wireless camera outside so u can see who is at doors...some systems will record with motion.
              all these things made it better for me to be alone at night...good luck to you.

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                #22
                I'm a C-6 quad who has been living alone for about 15 years.

                I won't repeat many of the tips already offered, but IMO for any quad in that C-5, C-6, and C-7 range, you might want to try these quad cuffs. They help my in so many ways.

                http://glovesforlife.com/quadriplegic-gloves-details

                The cuffs not only make it much easier to push my chair, i use them to help in transferring, to brush my teeth, write with a pen, use some kitchen utensils, and other random things which pop up that can slide into the cuff. They simply help make my life easier.

                Besides the cuffs, like most things in life, the more you do things the better you get at them. So tasks which in the past may have seemed so hard for a quad to do by yourself, the more you do them by yourself, the easier it becomes each successive time you do it.

                For example, early on i used to have an aide in the morning and at night, but hated having to always get in bed based on when the night aide came. So i canceled the night aide and worked on undressing myself in bed. At first it took forever. Now i can transfer into bed, get undressed, and be all situated under the covers in roughly 3-5 minutes depending on my spasms level each given night.

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                  #23
                  Wow that is amazing and gives you your control and spontinaety back, go to bed when you want not when they want. Good for you. I used to transfer with a board to bed and back in my chair before my daughter was born, maybe if I can continue losing weight I can do that again, not sure about the undressing and positioning in bed I think I will always need help with that. I am getting a chair with a scissor lift that can make transfers easier cause I can at least be at the same level. I don't have tricep muscles so the dressing etc not sure how that could work...

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                    #24
                    WillyG - Caregiving/assistance needs are a big challenge for all of us with upper-level injuries. In my case my Mother helps me a lot, which I really appreciate...but I can't help but feel like a burden since she's getting older.

                    Try working with your local Independent Living Center. They can advise you on your options. There is Medicaid & rental assistance but depending on the state you live in there's a limit on how much $ you can have. In New York the limit is $20,000 but it may be lower in other states. If you have your own dough & aren't going to "spend down" then you could pay for caregivers out of your own $.

                    Good luck.
                    C4/5 incomplete, 17 years since injury

                    "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

                    "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

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