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

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

    I have been living at home in my house with my brother for the last 10 years. He no longer wants to live here, and I have no other family that will help me. I have the use of one arm but my hand does not work. I can not do very much for myself. I see no way that I can live here by myself. I'm afraid that in the next 7 or 8 months when my brother moves I will lose my house, and will be forced to move to a nursing home. I don't know what other people like me do? Where do other quads live, and how is the quality of your life?

    #2
    try to find a roommate or two, close friends can always help out
    C5/C6 Complete since 08/22/09

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      #3
      In my city there is an assisted living center where the residents have their own apartments but with staff on site to help them. They come and go freely, use the paratransit system, and still have their own space. I know that would completely suck after owning your own house, but it is one option. I think finding a college student or even someone unemployed and willing might give you the freedom to remain where you are. A personal care attendant might be willing to work for reduced salary in exchange for free rent.

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        #4
        can you get aides to help you?
        "Smells like death in a bucket of chicken!"
        http://www.elportavoz.com/

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          #5
          I live with my parents and have pondered living alone myself. I currently advertise at the local nursing school for students to work has aides... they're young and require some patience, but they also don't mind doing the dirty work and can be kinda fun. Last round of hiring, I emailed the dean and he sent out an email for me. Anyway, you might be able to hire a couple of nursing students as live in aides... offer them a free place to live + expenses, and money on top of that if you can afford it

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            #6
            Does your brother provide your care? Can you hire someone to get you up and then come in to get you to bed? Can you afford to live in the home solo?
            If it's set up for you, can you access food and use a microwave/sink/stove? I can't use my hands but still can use a microwave, stove and sink (teeth are handy too).

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              #7
              I have not been on here for a while. I appreciate all your suggestions. I do have the funds to hire help. I would rather not have a live in, and I don't have any close friends to stay with me. My main concern is being alone while sleeping. My house is not as accessible as I need it to be, but I'm hoping to get help with that in April when I go back to Craig Hospital.

              My Hands don't work either anban, but I have never had things set up for me to be more independent. My family was never much help in that department. I depended on my brother and grandmother for a long time, now it's time for me to move on. Knowing that you and others can do this gives me some confidence.

              Thanks.

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                #8
                Originally posted by anban View Post
                Does your brother provide your care? Can you hire someone to get you up and then come in to get you to bed? Can you afford to live in the home solo?
                If it's set up for you, can you access food and use a microwave/sink/stove? I can't use my hands but still can use a microwave, stove and sink (teeth are handy too).
                anban,
                just out of curiosity, if you can describe it, how did you rig up the sink & the microwave for use without your hands?

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                  #9
                  Originally posted by wchair View Post
                  anban,
                  just out of curiosity, if you can describe it, how did you rig up the sink & the microwave for use without your hands?
                  For me I can use move my arms but not my fingures or tricept muscles. For the microwave just lower the counter or get a small cabinet that is at the level your comfortable with. Just set a microwave on your current table or counter and practice. Find cups and bowls that have an edge or handle that you can hook your thumb on. Just put warm water in it for weight to start practicing with so you don't dump hot soup on yourself. When you start heating things up it might be good to have somebody there to test the temp of the area your hooking with your thumbs. I've had a few blisters from things too hot but thats the good and bad thing about not having feeling in my hands.

                  My kitchen sink is just normal and I pull up to it sideways trying to not scratch the wood.vbg I have an extension on the lever handle to turn it on/off and hot/cold. Then the head of the faucet pulls out so I can just move it around instead of moving the bowl or plate. Again watch the water temp if you don't have feeling. The best thing is to have a dishwasher or have somebody that helps you in/out of bed do the dishes.

                  The main thing is to just try it. We are all different in what we can do so just practice with trial and error. The main thing is to act like the AB person isn't there even if you drop things. I have a broom and a dust pan with a long handle to pick things up. If something spills throw a towel on the floor and use the broom to move it around. If the broom falls to the floor use the dust pan to pick it up.

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                    #10
                    I am super worried about the same thing. I live with my mother who is 65, and I know there will be a day when she no longer is around. Live-in caregivers definitely suck, but if you can find the right one it might work out. Sometimes it seems like our only option for us quads is nursing home because you would need a small fortune for all of the hours of caregiving needed.

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                      #11
                      I have recently had to research solutions for my parents, who are aging and will probably need help soon. These days, there are many more options than just nursing homes. The independent living complexes that I've seen in this area are really nice. Each person has their own apartment and the bathrooms are nicely set up for wheelchair use. Many of the complexes also have community areas, workshops, sewing rooms, that sort of thing.

                      There are various levels of care that can be arranged with these living situations.

                      I'm a para but am very attuned to mobility needs since my injury. I've also had to watch out for places that would work for my dad since he has trouble getting around.

                      It might be worth it to check into places in your area, just to understand what is available, the pricing and decide if it's something that would suit you.

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                        #12
                        http://www.youtube.com/watch?v=1RuPE...eature=related

                        http://www.youtube.com/watch?v=TsW0x9WhoOY


                        Heres some vids, I like the girl in the first video because she is adorable. The second video is a lady who shows what she did to adapt things for her.
                        they both have more video's up, If you like, I can find more. If I were in your shoes, I might adapt the house, and get disabled roomie to rent the extra room. That would help you pay for care, or maybe a cleaning lady. You may be able to get a grant to help adapt your home for you.
                        Last edited by jody; 12 Aug 2012, 9:13 PM. Reason: added another video

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                          #13
                          People who live in the US NEED to have a social worker.They have ALL the contacts...NEVER wait untill the last minute,if you do you will most likely end up in a nursing home.There is a 4 year waiting list for an access. apt where I live.
                          C-6,complete

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                            #14
                            Originally posted by jody View Post
                            http://www.youtube.com/watch?v=1RuPE...eature=related

                            http://www.youtube.com/watch?v=TsW0x9WhoOY


                            Heres some vids, I like the girl in the first video because she is adorable. The second video is a lady who shows what she did to adapt things for her.
                            they both have more video's up, If you like, I can find more. If I were in your shoes, I might adapt the house, and get disabled roomie to rent the extra room. That would help you pay for care, or maybe a cleaning lady. You may be able to get a grant to help adapt your home for you.
                            she is adorable dang she is a higher lever than i am and a lot more handy she rocks

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                              #15
                              If you have funds also check with gettiing a supplemental trust so should you require Mediciaid down the road you don't lose your house and income.
                              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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