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Caregivers and Work?

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    Caregivers and Work?

    How do caregivers hold down a regular job?, I am a single father taking care of my 17 yr old son who is c5-6 quad, I have been running my own business since 1997, i like what I do as I can make my own hours, my problem is since my son got hurt back in 2001, my business has been going down hill, I put more time caring for him and less time into my business, I have been thinking I may be forced to get a 9-5, 5 day a week job, but I have no one to help with my son.
    He has to get up at 5:25 am for school,cath, dress, breakfast, groom, go out to bus at 6:30am, gets home at about 2:30pm, I do have someone who comes over to cath him at that time, then he is on his own til I get home or my younger daughters get home, bed about 9:00pm, undress, cath, bowel and shower(every other day on bowel, shower every third day), done about 10:30-11:00pm, 12:00am cath and turn.
    I do all this myself and get vary exhausted, and little sleep, any ideas? thanks

    #2
    I also feel real guilty as I just dont seem to have the time for his range of motion exersizes, or getting him into his standing frame, all I can get is more physical therapy but they stopped, saying they have gone as far as they can with him, which I know not to be the case, I feel he is losing years off his life because of me, thanks

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      #3
      Why no PCA?

      I was hurt at 19 and went onto Medicaid. A PCA came to the house to help. Then I hired a friend who worked through an agency.

      At least get some respite for evening care.

      Contact your local ILC for information. You can hire your own "friend" as long as they do not live in the same household. I'm sure your son does not need the added guilt of your business going down the tubes.

      *Join a Movement*
      Get involved in politics as if your life depended on it, because it does. -- Justin Dart

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        #4
        I'm afraid I can't be of much help to you jk since I live up here in Canada .... surely there must be some services available to you in your area ... you're headed for burn out if you don't get some soon ..

        I'm being a little nosy here but I wonder about your ex .. I read back on some of your old posts and I got the impression she does fairly well financially ... could you not get anything court ordered in the way of financial support since it appears you have all the kids! From what I read I can't imagine how she lives with herself to tell you the truth ... you are an awesome Dad and your kids are so lucky to have you ... stay strong!

        Obieone [img]/forum/images/smilies/cool.gif[/img]
        ~ Be the change you wish to see in the world ~ Mahatma Gandi


        " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
        Jane Siberry

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          #5
          I did get a court order for her to pay child support, which I look at more for helping with our son then actual child support, I have been asking her to help in any way for over 3 years now, she threatened to cancell her insurance and then leave the country if I submit the court order, but I may have to as she doesnt do anything to help, we all wonder how she can live with herself, my son even says dont bother dad you know she will not do anything, I think once he is 18 in June, he will qualify for more services, Vocational Rehab, Social Security and hopefully more, its just that I have taken a big hit over the last 3 years as he is a minor and everything seemed to be based on me, not him, and it is him who needs the help, I just want to be a father and Dad, not just a nurse and caregiver, as I have my other kids to think about, just gets overwhelming at times, He was denied social security based on me, I heard that is when medicaid or medical may kick in, does any one know if that is true?, thanks again for the support, Im hoping to keep the caregiving forum more activity, as I know I am not the only one who seekd advice and support.

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            #6
            jk, there's got to be something out there that can help you . . . here's a link to a site with names of disability attorneys and representatives in California. The situation you describe isn't fair to you or to any of your children, not that you need me to point that out.

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              #7
              Can you meet with his rehab social worker or ILC, I think it takes awhile after you sign up to get Medicare in place.

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