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Thread: What should I do?

  1. #1

    What should I do?

    I am a c5/6 quad dependant on others help. I live with my stepfather who works 12-16 hours a day and then comes home and puts me in the bed and does bowel program every other night. During the day my father comes to my house and gets me up (shower, dressed, etc.) He gets paid through an agency 56 hours a week. He only works Mon-Sat. so on Sun. my stepfather gets me up and puts me to bed. Basically my stepfather never gets time for himself or doesn't have his own life because he works all day and then has to deal with me when he gets home. My father comes up during the day and leaves and doesn't have to worry about nothing until the next day and also doesn't have to worry about Sun. but wants to take off because he's gettin wore out, so then it falls back to my stepfather. Sometimes I feel like I should just go to assisted living so no one has to worry about me. I know this is confusing but if anyone has any suggestions please let me know.
    sometimes life is hard, but the alternative is unacceptable.


  2. #2
    Senior Member
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    can the agency send aides for relief? i'd talk to them about that.
    "Smells like death in a bucket of chicken!"
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  3. #3
    They can but then that cuts money from my fathers pocket and this is his only job. I feel like the bad guy either way it goes.
    sometimes life is hard, but the alternative is unacceptable.


  4. #4
    This is about your health,not your dad's income. Is he working 56 hours a week. Going into assited living is the last thing you want to do. Esp. a young man and c5/6. I know C5/6 who are independant so going to a home is really umm unwise.

    It would help both your dad and step dad a lot by getting care from a proper caregiver. It is a burnout job for family. You must be fairly new at SCI. Glad you made it here. there are a lot of quads who will give you heck for hiring your dad and then his wanting to take off.

    Sounds like your dad is taking advantage of the situation and getting paid for work he doesn't do. Time for oyu to take charge.

  5. #5
    yea dude, if you can get medicaid/medicare you can get aides to come help out with whatever you need. screw assisted living. they mentioned nursing home to me 8 yrs ago when i was stuck totally alone. i was like.."HELL TO THE NO", HAHA.

    got my aides comin in, learned to do many, many things on my own since i was alone most of the day. finally ditched the night time aide and lived totally by myself for yrs. i'm c/6/7.

    GOOD LUCK man.

  6. #6
    Call Government home care. You can refer yourself just call them and say you need to have some help at home and should be covered by government. Social worker or Nurse asks questions and can provide relief with Physio to come in and assess your needs and also offer Personal Support worker to help with baths,cleaning and food prep. Hope it works out for you.
    ________________________________________

  7. #7
    Find non faMILY caregivers it will be best for all.

  8. #8
    im sort of in the same boat as u junker! well, nobody's taking advantage of me, but my mom n stepfather both take care of me. (c5/6) very dependent on others. and both getting old FAST! mom just went to the doc bc she's feeling ill.. i've been considering a home for months now. just dont have the b@lls to make that decision final.. i've been weighing on them hard. i must say, I LOVE THE POSITIVE RESPONSES in this thread though! yesss, im gonna have a good talk w/ them about outside help.. it will take away their pay, but ease their stress. hopefully.

  9. #9
    Quote Originally Posted by junkerdoggs View Post
    I am a c5/6 quad dependant on others help. I live with my stepfather who works 12-16 hours a day and then comes home and puts me in the bed and does bowel program every other night. During the day my father comes to my house and gets me up (shower, dressed, etc.) He gets paid through an agency 56 hours a week. He only works Mon-Sat. so on Sun. my stepfather gets me up and puts me to bed. Basically my stepfather never gets time for himself or doesn't have his own life because he works all day and then has to deal with me when he gets home. My father comes up during the day and leaves and doesn't have to worry about nothing until the next day and also doesn't have to worry about Sun. but wants to take off because he's gettin wore out, so then it falls back to my stepfather. Sometimes I feel like I should just go to assisted living so no one has to worry about me. I know this is confusing but if anyone has any suggestions please let me know.
    Like i said in another thread, you're capable of doing many things for yourself than you think now. From my experience at least, the longer i lived with my mom and her husband, the less reason i had to come up with ways to do things on my own given that it was easier to have them done for me. The best thing that happened to me was getting my own place which forced me to do things on my own that when i lived with my mom were usually done for me.

    IMO, if you can eventually get your own place, you'll not only get much more independent, you'll feel better about yourself.

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