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Thread: My Son Was Discharged & We're Having A Rough Time

  1. #11
    Senior Member
    Join Date
    Dec 2004
    Alberta, Canada
    Bob, I'm sorry your family is having a rough time at the moment. This injury is so unfair not only to the person that received it but to the close family and friends as well. I'm glad Adam has a loving family to take care of him. It's just too bad the hospital didn't prepare you all properly for the huge undertaking.

    My mom, sister and myself were given at least the basic knowledge before going home from the rehab hospital. But really, it's so difficult to be prepared for such a devastating situation, especially when unknown factors come into play such as fevers, and bowel changes.

    As for weight shifts while in a manual chair, as a C5 myself I pile pillows on the couch to a comfortable level, take the anti-tipping bars off, put the brakes on and lean back to relieve pressure or just to relax. You wouldn't have to hang on to him and he could have a pillow behind his head at the same time. As he get's stronger he will be able to shift his weight on his own.

    A side note, when I lean back in this way my bladder fills much faster, so you might have to watch his doesn't overfill if he has lack of sensation and can't tell how full it is. The reason it fills faster is because fluid builds up in my legs from lack of movement. I wear TED stocking to help my legs from swelling too much. Since his injury is so new I thought I'd better ad that in so you were aware.

    Just tell Adam to hang in there for me. I can remember when my injury was still fresh, I honestly wondered if I had been sent to hell. I didn't think life would ever be worth living again. Things might not be cherry but I'm sure glad I didn't die. Things will change, the more he moves and tries to exercise the stronger he will become. His body and mind will adjust. He will have fun again some day.

    Take care Bob.

  2. #12
    Good point about the carpet. We cut up cardboard boxes at the very beginning, to lay over carpet so I could get in the kitchen. And I didn't even have a hoyer lift!

  3. #13


    Just coping with the physical is enough. Man i sure hope you find some help there. It brings back memories. Your daughter has to be overwhelmed. I think any support you and your wife can give certainly is helpful. I pray you get through this situation.

  4. #14
    I am sure everyone is afraid. Nervous, etc...
    So, there is less fear in numbers. Right????
    I commend your daughter for doing this. Everyone, as many as possible s hould have been trained. Bu tlet's move on.
    Also, he needs to direct his care & he should be able to explain how to do things even if he can't do it.

    So....set up a schedule for the first two weeks that some one, other than your sister & /orher family is there. 24/7. to help her & her family. Use this as training sessions, support this etc.. also. Always have a primary person with one other caregiver assitnat available for these first couple of weeks.

    You daughter has children she needs to take care of.
    Train everyone you can now, have a plan. Don't expect her to do it alone & don't say you don't see the big deal.
    Is he eligible for home health nurses, aides, therapists?
    Then once everyone is "trained" and more comfortable with the process, it will be time for school to start then you can make another schedule with
    when there needs to be assitance.

    Use of hoyer, transferring-with sliding board? Things to do with 3 people there at first. As more experienced is gained and comfort with it- then you can do it with one person. Try practicing hoyering family members before transferring your son. I used to let my students transfer me- key here is used to. Get in the darn hoyer and have someone who has never done it before and pretend your have a SCI injury and can't move- you will get a glimpse of how your son feels.


  5. #15
    certainly everything is overwhelming right now because you weren't as prepared as you could have been, and i know he feels like he suddenly doesn't fit in the world around him anymore, but little by little it will get better as you work through each issue day by day. hang in there.

    another tip is to remove the pad from under the carpet. a lot easier to roll on then

  6. #16
    Plenty of prayers coming from me...

    Please let Adam know we are all thinking of him here...


  7. #17
    Bob, I read this thread hours ago, but was on the way out. As I read your initial post I was so taken back that a center would let you guys get discharged w/o the proper care info.. It really is disappointing to know in this day and age that it is still happening. I think that you have gotten excellent responses so far so I won't sound like a broken record. I have some videotapes that I'd be happy to send you on...

    -Overview of Spinal cord injury
    -Family training on skin
    -Bowel management
    -Bladder management
    -Respiratory care

    These were the tapes that I was sent home with from the Shepherd Center and are very informative..

    I also have a Personal Care Manual that is given out by the Shepherd Center. This manual is an excellent tool to have as it can answer most situations to this condition. I was fortunate enough to have had my g/f at the time make copies for the entire family and I have 1 extra if you are interested. Send me a private message with your address if you wish..

    Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

    If you ain't laughing, you ain't living, baby. Carlos Mencia

  8. #18
    The Shepherd manual is available on-line here:

    There is also this manual available from Thomas Jefferson/Magee in Philadelphia:

    This attendant training module may also be helpful:

    Of course the consumer booklets from the Consortium for Spinal Cord Medicine on autonomic dysreflexia, skin care, bowel care, depression, and functional outcomes are also invaluable:


  9. #19
    Senior Member
    Join Date
    Sep 2006
    Baltimore MD
    Thanks, all for the suggestions & links.
    Please keep 'em coming.
    I'm trying to disseminate and wade thru evertything. Time is short now.
    I'll get back asap.
    Bob B
    SCI - Parent

  10. #20
    Senior Member
    Join Date
    Sep 2006
    hampton bays new york

    you're lucky I didn't find this site until late in the game, I was sent home alot like your son, and had to learn all rhese things the hard way until now. Now I've found out so much of the iniutial problems I had were not only to me, but the same went for others too. As good as I'm doing, I'm still battling bowel issues, water in the foot among others that I have not quite got a grip on yet. Everyone here has had alot of these things and it is always informative still three years later to read about it. Even today I've got a few things going on, and am riding it out as we speak.

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