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Thread: how can i live by myself?

  1. #11
    Quote Originally Posted by SCI-Nurse View Post
    Who pays for the CNAs you have now?

    Have you considered going back to school or to work?

    There is really no reason that you need to have 24/7 someone with you. Moms tend to be over-protective. I know of no state program that would provide you 24/7 care unless you are on a ventilator. Most people at your level of injury who live along have someone who comes in the AM and helps with bathing, bowel/bladder/skin, dressing and transfers in 2-4 hours, then they have someone else who comes in the evening to put them to bed (1-2 hours). Often one of these people also prepares meals that you can heat up in a microwave or take out of the frig when they are not there. Few people have someone who stays the night. Finding live-in help is very difficult, esp. unless you have the resources to rent a 2 bedroom apt. or house and provide them with room and board as part of their pay. This means you need to be able to use a cell phone or other emergency system to call for help at night when you are alone and in bed.

    Here is where you can find a list of Independent Living Centers in your state. They can provide you with information, advocacy, and resources to help you live independently in the community.

    http://www.ilru.org/projects/cil-net...tion-directory

    (KLD)
    We have accumen and they pay our cna's, but we are in charge of hiring/firing the CNA's and doing their payroll. It's a pretty good system. It allows me to get a lot of hours. But I really don't need 24/7 care. I could definitely make it with people coming in only in the morning and night and on some days in the evenings also. My biggest hurdle is my bowl program. I do my bowl program every four days at night time and it takes 3-4 hours. Finding someone and paying them to do that is the hardest part.

    Thank you for the independent living center website link. I will check it out.

    I would like to work, but I don't want to lose my medicaid. I have worked at my friends cell phone store some, and I like that. It's easy enough, but unfortunately they can't work me very often.

    I did some online college at the Art Institute, but I dropped out after a year. It was really hard, even with a light schedule. But then again I was going to the wound clinic then and that took up a lot of my time. It was also crazy expensive. I still owe them like $11,000. So now I wonder if someone would even lend me the money to go back to school.

    I have this problem with my body though. Many days, my body feel so tight and stiff. It makes it hard to even type. I feel double paralyzed on those days. But I am thinking about getting a baclofen pump put it, and I heard that that will help.

    And thanks for all your help. Your replies have really helped me over the years (even when I used different screen names).

  2. #12
    Quote Originally Posted by Inthemiddle View Post
    New member here, chiming in with some encouragement. My husband is C5 complete and within two years of his injury he was living alone in an accessible, HUD subsidized apartment. He had (and still has) a carer in the morning to help him with his bowel routine, dressing, etc. and one at night to help him back into bed. His morning carer made his breakfast and left him with water and lunch. His evening carer fixed his dinner. He lived alone for several years.

    Your local independent living center can help you fill out applications and get on waiting lists - it might take a while for a place to open up because space is limited. Good luck!
    Thank you! That is very encouraging! Did he work then? Does he work now?

  3. #13
    Quote Originally Posted by Tim C. View Post
    Yes, find group home full of crips like us. You can have wheelchair fun.
    I would like to roommate with someone who is in a chair. That would be interesting.

  4. #14
    Quote Originally Posted by MeetMeInMontauk View Post
    We have accumen and they pay our cna's, but we are in charge of hiring/firing the CNA's and doing their payroll.
    What is Accumen? Is it private insurance? State Medicaid? Why can you not continue with this if you move out on your own?

    Quote Originally Posted by MeetMeInMontauk View Post
    My biggest hurdle is my bowl program. I do my bowl program every four days at night time and it takes 3-4 hours. Finding someone and paying them to do that is the hardest part.
    Why do you only do bowel care every 4 days? Going longer than 3 days is highly correlated with long term problems such as obstructive megacolon. Why does it take 3-4 hours? Are you doing bowel care in bed or up on a toilet or commode? What does your actual bowel care consist of (suppository, dig stim, etc. etc.). Ideally bowel care should not take more than 45-60 minutes total, start to finish.

    Quote Originally Posted by MeetMeInMontauk View Post
    I did some online college at the Art Institute, but I dropped out after a year. It was really hard, even with a light schedule. But then again I was going to the wound clinic then and that took up a lot of my time. It was also crazy expensive. I still owe them like $11,000. So now I wonder if someone would even lend me the money to go back to school.
    You should be working with the state Dept. of Vocational Rehab on a plan for going to school and eventually becoming employed. If college is part of a career plan with them, they will fund your college, including tuition and books and perhaps even transportation to/from school.

    (KLD)

  5. #15
    Quote Originally Posted by SCI-Nurse View Post
    What is Accumen? Is it private insurance? State Medicaid? Why can you not continue with this if you move out on your own?
    Accumen deals with medicaid to pay for our services, and I can continue the services once I move out.

    Quote Originally Posted by SCI-Nurse View Post
    Why do you only do bowel care every 4 days? Going longer than 3 days is highly correlated with long term problems such as obstructive megacolon. Why does it take 3-4 hours? Are you doing bowel care in bed or up on a toilet or commode? What does your actual bowel care consist of (suppository, dig stim, etc. etc.). Ideally bowel care should not take more than 45-60 minutes total, start to finish.
    I didn't know that it would cause problems. Would it be OK to do the bowel program every 3 days? We do my bowel program in the bed. We use a "magic bullet" suppository. They're made by the Shepherd Center pharmacy I think. They are supposed to work faster and better than normal suppositories. My mom inserts the suppository and then comes back an hour later and checks. Then an hour later again, and an hour later again, and once more an hour later again until she gets what she calls a "clear" I'm not really sure what that is, but that's how we've been doing it. I get very dysreflexic when she checks my bowels though. I've tried to do the dill stimulation in the past but I literally cannot stand it. The dysreflexia is too bad. I really wish that my program only took 45-60 min though. That would a great help. I am open to whatever may help.

    Quote Originally Posted by SCI-Nurse View Post
    You should be working with the state Dept. of Vocational Rehab on a plan for going to school and eventually becoming employed. If college is part of a career plan with them, they will fund your college, including tuition and books and perhaps even transportation to/from school.

    (KLD)
    Years ago I went to the vocational rehab department in my hometown and they weren't very helpful. They said that they didn't have a lot of money. I would like to try them again though. I am going to try them again and the independent living centers in my area.
    I was injured 2 weeks after my 16th birthday on June 14th, 2004. My level of injury is C5 complete, but I can move my wrist.

    My screen name comes from the movie The Eternal Sunshine of the Spotless Mind

  6. #16
    Senior Member
    Join Date
    May 2010
    Location
    Chesapeake, VA
    Posts
    589
    The Magic Bullet is not made at Shepherd. They do sell them though. We get them online by the box and do BP in on the shower/commode chair every other day. It takes about 45 minutes from the time I insert the Bullet. Ry can tell when he is finished or if he feels there is more to come. Normally, It comes in one pass, he cleans himself and I take the bag out. We joke at my house that between Ry and the cat, my outside trash can is really the poop can since we make very little trash that cannot be recycled or composted.

    Try doing your program in a sitting position and it should reduce the time needed as you will have gravity assisting. If your shower chair does not have a commode component, you can use the same disposable pad your mom is putting under you-just put it on the floor.--eak
    Elizabeth A. Kephart, PHR
    mom/caregiver to Ryan-age 21
    Incomplete C-2 with TBI since 3/09

  7. #17
    There's no way I can try to do it sitting up. My mom has a bad back and it is just waaaaaay too much trouble to try to do a bowel program in a shower chair. But thanks for your comment. It helps to see what others are doing.
    I was injured 2 weeks after my 16th birthday on June 14th, 2004. My level of injury is C5 complete, but I can move my wrist.

    My screen name comes from the movie The Eternal Sunshine of the Spotless Mind

  8. #18
    I feel like I've made some progress with calling my independent living center and them directing me to HUD housing. I'm not sure how it would be but it seems more possible now.
    I was injured 2 weeks after my 16th birthday on June 14th, 2004. My level of injury is C5 complete, but I can move my wrist.

    My screen name comes from the movie The Eternal Sunshine of the Spotless Mind

  9. #19
    Quote Originally Posted by MeetMeInMontauk View Post
    Thank you! That is very encouraging! Did he work then? Does he work now?
    He has not worked a regular job since his accident. He did go back to school to work on his degree and he was a single dad with three kids (they're all grown up now) now he runs our household and I work full time.

  10. #20
    Quote Originally Posted by MeetMeInMontauk View Post
    I feel like I've made some progress with calling my independent living center and them directing me to HUD housing. I'm not sure how it would be but it seems more possible now.
    The key part of getting the results that you want is to stay organized and stay on top of them. Document each phone call or correspondence and be persistent.

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