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  • #16
    Are you on ALTHCS (the long term version of AHCCCS)? If so, they do cover attendant care, skilled nursing for bowel/wound/skin care, etc. ABIL can help you determine your eligibility and help guide you through the process. You might try AZSCIA as well. Talk to Ashleigh.
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

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    • #17
      www.voa.org

      you might check with VOA http://www.voa.org/Services/Housing/...7/Default.aspx

      they might have some advice. can u get home health care through medicare? have an aide come out and do wound care and b0wel care?
      how about section 8? nursing homes are rough but sometimes better than nothing.

      good luck

      dave

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      • #18
        Sorry Ryan. I know how much that hurt. My daughters burnt out taking care of me.
        They wanted a mom not a patient. They do lots for me that's not hands on.
        I spent 3 years in a NH. So thankful to my place at my sister's.
        I found out the same thing KLD said for here in Texas.
        Assisted Living won't do any invasive procedures.
        They have like 1 aide for the whole bldg. & no nurses.
        They won't let you have any aides of your own come in either.
        Someone needs to come up with something in between assisted & nursing homes.
        But you should have home health care that would take care of you.
        Call the aged & disabled section of Human Resources and ask them if they have CBA.
        Community Based Alternative.
        I have that & it beats HHC (which I was on for years) hands down.
        They provide aides, nurses, supplies, buy you adaptive aides and remodel your place.
        It would be nice if you could get on it.
        I'll pray for you. It can still work there.
        You're just gonna have to get good help and not lean on family.
        sigpic

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        • #19
          Well I refused to go into a nursing home mainly from the horror stories I've heard, not to mention I stayed atchat well one for a month after surgery last year and it was horrible. It took forever to get any assistance for anything. My mom has since calmed down. Like I said earlier, I'm not under the same roof with them, just on the property in my own house. I do go through agencies to get the pay for my caregivers so only a few hours is out of my pocket. And as far as meeting someone at night, I need someone to help me with dinner and all that stuff and when I'm off bed rest, someone to get me into bed. I have nowhere near the strength to transfer myself and I've tried many of times. I've got a new nighttime caregiver starting this week, for just a couple of hours a night, not overnight or anything. That lady ended up quitting Wednesday night because she said I was mean to her. I had to be a little bit firm just to get a word in to get her to do stuff she talks so much, and even when I asked her to be quiet because I was having a lot of pain or anxiety, she would say how much he appreciated me asking her and then keep on talking. It really drove me nuts, not to mention in the three weeks that she worked here, she missed five days. Even my mom thought she was wacky because the night before she sat down to talk with my mom and me about her not being able to make it all the time, she talks so much neither my mom or I could get a word in and my mom eventually just left to get away from her. It was horrible. And here I hired her because I thought she would be most dependable because she seemed to be the most responsible of the bunch that I interviewed. Well, situation solved, and the new lady I hired knows how to do bowel care and is willing to learn how to fix my sore dressing if necessary. And she's nice and quiet unless we are talking. Just does her job and figures it out all on her own (I desperately needed help Friday night and she was willing to help even though I didn't have only interviews done). It's nice.
          C-5/6, 7-9-2000
          Scottsdale, AZ

          Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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          • #20
            Hey, Ryan!

            Glad things are looking a bit better for you, friend.

            Wanted to let you know that I can't get into yahoo IM for whatever reason...so please don't think I am being snobby to you...

            Take care friend!

            Teena

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            • #21
              sorry to hear what you're going through. Getting dependable and capable personal attendants is so frustrating. Hang in there.
              Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.
              -Dorothy Thompson

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              • #22
                This is good news Ry, I'm glad your mom calmed down too, I don't think a nursing home would have been a good place for you.
                A dolla makes me holla, honey boo boo! - borrowed from Honey boo boo child

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                • #23
                  WQUOTE=Uncle Peter;1065981]Nursing home is like prison. You want to exhaust every option before doing hard time.[/QUOTE]
                  Prison was better I have been in both. Sounds like you may have found you a good attendent. if an attdendent is not able to handle a bowel program then they are in the wrong line of work.
                  i have been finding my own aide for 30 something years now, you never know for sure who will be your best worker. it is a lot of trial and error. stay away from the ones that call you baby, sugar, sweetheart and such they as a general rule do not make good help.
                  do not worry about about someone that thinks your mean just because you ask them to do something. some folks start tripping when a quad starts giving orders.
                  i am looking forward to this Wednesday night I am goiing to be on a panel here in Fort Worth in a townhouse meeting with some people from the state to discuss our needs from our point of view.

                  best 0f luck,

                  David
                  Last edited by reedyd; 07-27-2009, 04:51 PM.

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                  • #24
                    Originally posted by SCI-Nurse View Post
                    Rybread, I am so sorry. I would advise you to check out what you are calling assisted living centers though. In my state, an assisted living center is only allowed to help you by providing your meals and housekeeping, and light ADLs such as dressing, and give you your medications. They are not allowed to do bowel, bladder or wound care, and such needs would require instead that you go to what is called a "skilled nursing facility" (ie, a nursing home). Do whatever you can to avoid this. It is nearly impossible to get good care in one, and as above, you loose your freedom and much of your dignity.

                    See if you don't qualify for some state/county funded attendant care. Do you really need someone with you at night? Talk to your local ILC. They should be able to help you. I know that a lot of my AZ clients live alone even with fairly high injuries, and they do get attendant assistance through the state. You may also be able to supplement this with skilled services through an agency using your Medicare or Medicaid for things like wound care and bowel management if you are technically classified as homebound (which you would be if you are on bedrest for your pressure ulcer).

                    Staying in your own place (either there or moving to an apt.) is always preferable to institutionalization. You remain in control of your life and your body.

                    (KLD)
                    What about a CNA who is also nurse delligated? I have 2 of these who are my caregivers and they are allowed to do bladder and bowel care, if needed. I have never have needed them to cath me or change my ostomy appliance, but they know how to do that just in case. They give me my medicine via feeding tube, change the tube site dressing twice daily, and set up my feeding pump with enteral formula every evening. Are all laws regarding this type of caregiver different in each state? Or do you have to go through a caregiving agency to get this kind of care?

                    Jessie

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                    • #25
                      These laws are different in each state. In CA, if an RN delegates any procedure that "invades an internal body space or organ" to unlicensed assistive personnel (UAP), which includes CNAs, HHAs, or other non-RN, non-LVN person, they are not only breaking the law, but putting their own license at risk. This applies in hospitals, nursing homes, and home care. This means no medication administration, no tube feeding, no suctioning, no suppository insertion or dig stim or manual removal, no straight catheterization, no changing of indwelling catheters, no irrigation of indwelling catheters, etc. etc. etc.

                      On the other hand, if you have a disability, you can directly hire (not through an agency) anyone as a PCA do do just about anything for you, including all of the above, and if you have IHSS eligibility, you can hire them using those funds (although the pay is not much more than minimum wage, with no benefits).

                      (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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                      • #26
                        Rybread, if you have to pay out of your pocket for your attendant expenses, and do not qualify for Medicare or Medicaid services, I have found good attendants through this website www.care.com

                        Keep staying independent, you can do it!

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                        • #27
                          i am on a program where I am designated as the employer called CDS and work with a budget through a book keeping company. I can pay my aide up to 11.00 a hour and they are a lot less restricted than the ones through an agency. Much better than assisted living.

                          Thanks

                          Comment


                          • #28
                            reedyd,

                            Would you mind posting a little more about the program you are on?
                            Or PM me if you want. I am also in Texas, and the only one I know of is DADS.

                            Thanks!

                            Originally posted by reedyd View Post
                            i am on a program where I am designated as the employer called CDS and work with a budget through a book keeping company. I can pay my aide up to 11.00 a hour and they are a lot less restricted than the ones through an agency. Much better than assisted living.

                            Thanks

                            Comment


                            • #29
                              It sux when the stress and fear of not finding a caregiver results in putting up with wackos. I remember having some aides that were such a drag, it would put stress on the family instead of relieving it. My dad helps me on weekends, so it's like we have a break for two days. But when I had a few lousy ones, you could feel the tension building on Sunday night knowing that Monday morning we would have to encounter some undesirable character.

                              How often did your mom have to interact with this lady? Maybe a better caregiver will help ease things. Best of luck.

                              Originally posted by rybread View Post
                              Well I refused to go into a nursing home mainly from the horror stories I've heard, not to mention I stayed atchat well one for a month after surgery last year and it was horrible. It took forever to get any assistance for anything. My mom has since calmed down. Like I said earlier, I'm not under the same roof with them, just on the property in my own house. I do go through agencies to get the pay for my caregivers so only a few hours is out of my pocket. And as far as meeting someone at night, I need someone to help me with dinner and all that stuff and when I'm off bed rest, someone to get me into bed. I have nowhere near the strength to transfer myself and I've tried many of times. I've got a new nighttime caregiver starting this week, for just a couple of hours a night, not overnight or anything. That lady ended up quitting Wednesday night because she said I was mean to her. I had to be a little bit firm just to get a word in to get her to do stuff she talks so much, and even when I asked her to be quiet because I was having a lot of pain or anxiety, she would say how much he appreciated me asking her and then keep on talking. It really drove me nuts, not to mention in the three weeks that she worked here, she missed five days. Even my mom thought she was wacky because the night before she sat down to talk with my mom and me about her not being able to make it all the time, she talks so much neither my mom or I could get a word in and my mom eventually just left to get away from her. It was horrible. And here I hired her because I thought she would be most dependable because she seemed to be the most responsible of the bunch that I interviewed. Well, situation solved, and the new lady I hired knows how to do bowel care and is willing to learn how to fix my sore dressing if necessary. And she's nice and quiet unless we are talking. Just does her job and figures it out all on her own (I desperately needed help Friday night and she was willing to help even though I didn't have only interviews done). It's nice.
                              .
                              "If ya don't have it in the hips, ya better have it in the lips..." ~ Charlie - Villa Dulce

                              Comment


                              • #30
                                Maybe ABIL (Arizona Bridge to Independent Living) or AzSCIA - Arizona Spinal Cord Injury Association can help you find a place? I know that Scottsdale Healthcare Osborn has a rehab that can be long term. I'm sorry that you might have to go into an assisted living facility. I also live in AZ, so I can ask around.

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