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    Quads living alone?

    Well me and my wife may be calling it quits after 1 1/2yrs. marriege and going together for 5yrs. bafore that, since a few months before I was injured. Seems I'm just to much work, I do get 45.5 hours attendant care a week but its not enough, we also wanted a child someday but she is already overwhelmed.

    My question is can a C5/C6 quad living on SSI make it on his own? I'm in PA and am considering low income housing, food stamps, and hopefully more PCA hours. I am going to school and will finish that and get a job in 2yrs. but until then I'm a little woried, mostly about the state giving me more PCA hours.

    Thanks for any input,
    Dave
    Dave
    C5/C6 complete
    http://www.davegrotzinger.com
    http://www.daves-webdesign.com

    "I knew all the rules but the rules did not know me guaranteed..." - Eddie Vedder

    #2
    I'm sorry to hear that David. I'm a c6 quad and I get by with 9-10 hrs a week, wich is mostly housecleaning and shopping. I can transfer independently and dress myself, but I like to have my PCA there for my BP and shower.

    NO SOUP FOR YOU!!!
    www.worldonwheels.ca

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      #3
      I know quite a few people at your level who get by with 3-4 hours of PCA care daily. You do have to get very organized, set priorities, and be creative. Most do ROM, transfers, bathing, bowel care and dressing in the AM in about 2 hours, then their PCA makes then a sack lunch. Dinner is often something frozen that you can microwave easily, take out, or eating out. Then a PCA comes for bedtime care, undressing, skin inspection, bed positioning and transfers.

      Talk to your ILC to be sure you are accessing all the benefits you can, including PCA care. You also might want to consider a roommate situation (either just a roommate, or a roommate/PCA) if you can, as this will reduce living expenses.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        #4
        A roomate is great for emergencies too (ie. middle of the night problems).

        "Learn from yesterday, live for today, hope for tomorrow"
        ~ Anon
        Emily, C-8 sensory incomplete mom to a 8 year old and a preschooler. TEN! years post.

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          #5
          Im C5/6 and my routine is an exact copy of Christophers.I recieve between 8-10 hrs aweek for the same reasons, BP and someone around in case i hit the deck in the shower.Dressing and transfer i can independently so im on my own at night.But not everyone is the same...goodluck man..

          ~~Where am i going and why am i in this handbasket~~

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            #6
            i'm a c6 that lives alone but i have money so its kinda easy


            Still alive
            Death and taxes

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              #7
              I need my PCA's to take me to school and run all my erends with me as well as my daily care as I can't drive myself.

              I hope one day I have money but I have to get thru school first.

              Dave
              Dave
              C5/C6 complete
              http://www.davegrotzinger.com
              http://www.daves-webdesign.com

              "I knew all the rules but the rules did not know me guaranteed..." - Eddie Vedder

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                #8
                I have a friend C5 who is living alone. But he has PCA 40 hours a week.

                TH 12 incomplete 12-12-69.
                TH 12, 43 years post

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                  #9
                  Aren't you eligible for paratransit or transportation from your school for disabled students? Is Voc Rehab helping you go to school? Will they pay for some of your transporation needs? Can you take paratransit to do your grocery shopping and other errands too? Few people I know can afford a PCA to do other than their personal care, and in my area the county will not fund anything but personal care either.

                  (KLD)
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                    #10
                    It's scary, but at your level, you ought to have no prob. I know several ppl who do it and don't get anywhere near 45 hrs/wk. I'm betting you'll find you don't need that.

                    Ever thought of a canine companion? I suggest you get on the waiting list.

                    Comment


                      #11
                      Sorry to hear about your breakup, D.

                      Re your comment about your PCA driving you to school - do they also stay w/you during class for notetaking, etc?

                      I would speak to your schools' special needs counselors; sometimes they provide notetakers for classes. You also might put a note on a bulletin board at school, and perhaps another student could drive you back and forth.

                      _____________
                      If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa
                      _____________

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                        #12
                        Dave, I don't know what your SSI would be, but if you are able to find subsidized housing and apply for FS, you should be ok. You need to apply for housing ASAP since there can be a long waiting list for Sect. 8 and many subsized buildings themselves have long waiting lists.

                        If you and wife are divorcing, and she was your primary PCA, then you should be able to recieve more hours than what you are currently recieving. I think this may depend on when/if she plans to move out and/or when you move out on your own. Once your living situation changes, your needs and required PCA care will change, so inform your Home Services counselor about this so they can come out to reassess your situation and redetermine need.

                        If you recieve any assistance from ORS (Voc), you can find out if they will grant you additional PCA hours for school, especially if what is provided thru Home Services is insufficient for you. You must be able to show that it is directly related for care to fulfill your school/work goals, NOT just needing extra PCA hours so you can go ancilliary personal errands. Your school (Office of Special Needs) can find you assistance for classroom. If there is no "Office..", you should still speak to the Dean of Students to see how they can still assist you. Apply for paratransit, if you haven't already, and Voc may assist with transportation costs. Paratransit usually is cost of regular public bus fare, unless it is through a private service. You could also try going shopping on your own riding paratransit, and if needed, asking grocery clerks for assistance shopping once you get to store.

                        BTW, can you transfer into bed on your own? If you can, this could reduce your need for PCA at night, which may be difficult to find if needed for just an hour or two just to help get you into bed.

                        Oh, re: the campanion dog, if you are not fully independent and needing assistance for yourself to perform some daily tasks, and also short on PCA hours, a dog, even one that is a "working dog" that may increase independence in some areas, will definitely require MORE work, effort and cost to take care of- ie Daily walks at least 2x's a day, incl. cleaning up after them; regular grooming and bathing; buying food; regular Vet visits and medications, etc. If you can't do these on your own, or afford the additional costs involved in their care, a companion dog may end up being more of a burden physically and financially than you may expect.

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                          #13
                          are u inc. im inc c4-5 and have lived alone for10 yrs but i dont have to do a bp. i use 0 pca care. only thing that i do, is my father or mother stop over in the evening for a minute why i jump into the shower. thats a tough transfer. but ill have a roll in showerr soon so that wont be an issue anymore.
                          but i can transfer and dress independently
                          Bike-on.com rep
                          John@bike-on.com
                          c4/5 inc funtioning c6. 28 yrs post.
                          sponsored handcycle racer

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                            #14
                            Reading this post made me wonder....are there any quads who have no hand movement who are totally dependent on others that live alone? Well, I guess they couldn't live alone, but is there such thing as full time care. Does insurance pay? Or do those quads with no family just live in nursing homes? Just wondering about my future just in case.

                            Marie
                            Unbroken by the grace of God
                            Marie
                            Unbroken by the grace of God

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                              #15
                              Define hand movement.....I cant move any of my fingers at all and i have about 80% of my normal wrist flexion...

                              ~~Where am i going and why am i in this handbasket~~

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