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Thread: Home care for my son: where to start?

  1. #21
    I would also strongly reccomend Craig Hospital in Colorado. He would be in excellent hands.

  2. #22
    Quote Originally Posted by Sh1wn View Post
    Really whats the deal with you not taking care of him? I don't know what I would do with out my mom. Yes it does take some getting used to but its nothing you haven't seen \ washed \ wiped before.

    Even if you do get caregivers for him theres still going to be times were something will happen and and the caregiver will be off or sick. You will be amazed by how little medical people know about dealing with SCI.

    Even if you don't think you can physically do it theres equipment for that. There's going to be times when your son is going to need a advocate and you are probably the best person for that job.
    Dear Sh1wn,
    My son would not accept it. Everyone's different, and having his mother changing his diapers would be the final straw. I can easily put myself in his place. That said, I am aware that there will inevitably be times when there is no one else around and we'll have to "muck in".
    Throughout the time my son has been in hospital I have been with him almost every waking minute, and when he comes home I will be the main person he relies on. I have tried to be his advocate all along the way -- and God knows he has needed one.

  3. #23
    Quote Originally Posted by janvancan View Post
    Look into Standing Start in the UK. I believe it is in Manchester. We have a few facilities in the US if you can come here.
    Thanks janvancan. I believe Standing Start is a sort of franchise of Project Walk in the U.S. I think they're more about functional recovery using their unique method. Would be very interested in this, but unfortunately my son has developed quite severe osteoporosis so would not be eligible for their programme until this is reversed.

  4. #24
    Quote Originally Posted by LindaT View Post
    I just keep thinking about the young people in rehab when my husband was there.
    Some of them did not have family with them all of the time, but did really well because there were scheduled classes, PT,OT etc.
    It was good seeing them bond and encourage each other.
    My husband was an older than average patient, but we enjoyed seeing their progress.
    This was in the US, but there must be places for him to spend some time learning some skills. Wish I had some ideas, but know nothing about the part of the world you live in.
    What would he like to do?
    Thanks for the idea, LindaT. I think my son's preference would be to go to the US or UK even he had to go on his own (remember, he was about to go off to university when the accident happened -- he was ready to fly the nest so the timing of the accident was especially cruel, not that there's ever a good time for such a thing to happen). In the first two hospitals where he was treated, he was surrounded by elderly stroke patients with whom he had no common language. Here in Bangkok it's a big international hospital and we've met some nice people among the patients here, but they come and go and there are no other spinal cases his age. Being able to bond and learn with people his age would be great for him. But, having lived through this thing with my son for 19 months and knowing that things can go wrong in a very big way very quickly, I would not want him so far from us that it would take 24 hours to get to him. Considering that he is 19 months post and has already done a lot of physiotherapy and is stable with no complications (apart from the osteoporosis which was a nice surprise), how long do you think he would have to stay at a place like Craig Hospital or Shepherd Centre to learn some survival skills? And by the way, what sort of costs are we talking about?

  5. #25
    Quote Originally Posted by Rich H. - New York View Post
    I agree with Donno. Living at home is tough @ first, but then you become more & more independent VERY quickly. That is not to say it does not have it's own set of challenges...for me it was the mental challenge of returning to your day-to-day environment and realizing the long-term nature of the injury. Physically, I have not looked back.

    That being said, SCI treatment is pretty poor in Asia, from what I have been told by health care professionals.

    Also, try not to be "opposed to doing any of the intimate things for him like washing and bowel care." My folks helped with this, and while it's a little awkward, it's not the same as pre-injury. I was in survival mode and all bets were off.

    That being said, SCI takes a huge toll on the family and loved ones too. It's seems that you are overwhelmed [and justifiably so]. Make sure to take care of yourself and immediate family as soon as possible. Counseling to develop coping skills is imperative.

    Hope this soapbox blurb helps.
    Thanks for your reply, Rich H. The problem with us doing the intimate care is that our son would not be able to take the loss of dignity. I can imagine doing these things for my daughter if she ever needed me to, because she is a different sort of person and could probably accept it even though it wouldn't be pleasant.
    I often wonder about the process that other families go through. How long does it take to get over the terrible grief for what your child has lost? What's the right balance of hope and realism? (I'm an obsessive reader of the Cure section here and all other news about medical breakthroughs for treatment of SCI). What sort of counselling would you recommend?

  6. #26
    Senior Member
    Join Date
    Aug 2007
    last house on the left
    Hi mamadavid,
    I really believe that sending your son to a place like Craig hospital in Colorado or Shepard Center in Atlanta would be in his best interest. Not only will he be able to bond with his peers, which in itself will be liberating, he will also learn the skills necessary to maximize his future. You said he was about to leave for college anyway, so could you not try to look at this in very much the same light, except with potentially even more benefits for his future? Whatever came up medically could be best taken care of there anyway, so the 24 hours it would take you to get there, while difficult for you, in no way affects the quality care he would be receiving. When I was first injured I was in a general hospital for awhile, and being surrounded by stroke victims and the aged wasn't exactly a psychological boost for the 17 year old I was at the time. It wasn't till I was around other people with SCI's that I really learned how to function, what was possible, and to be able to set realistic goals.

  7. #27
    Junior Member
    Join Date
    Mar 2011
    I have an appointment @ Mt. Sinai today and will ask for ideas for you guys. Hang in there. retaining dignity is huge...he can't be blamed for that. I had that same feeling and still do.

  8. #28
    I agree with you Sh1wn that the family should be taking care of him. Mama David i understand that you son does not want you to do the iminate things for him but he also does't want to be helpless either. Everyone has to do things that they dont want to and everyone has to have things done for them that they may not want. A few years ago my grandfather had a stroke and was in bed constantly. He had to be cleaned up, turned, given meds, EVERYTHING had to be done for him and he knew it. Who do you think took care of him???? His familly did....he had someone with him 24/7 365 days a year for 13 months until he passed. He was a very proud man and if he was able to he would have wiped his own butt but he couldn't and he knew it. Maybe my family is just closer than others i dont know but i believe that family should help take care of their own. It would have been easy to stick him somewhere and have someone else take care of him but that is not what you do to family. Your son and you need to learn how to do things. If I was in his condition and had to rely on stangers to teach me how to do things and take care of my needs well i wouldn't feel loved or important to my family.

  9. #29
    Senior Member
    Join Date
    Aug 2007
    last house on the left
    I think there needs to be a clear distinction of what we are talking about here. What I want for your son is the possibility of really, really good rehab, so that he will have an opportunity to function well in the world. Nothing could be more crucial as far as I am concerned. Whatever level of help you and your son can acomodate is something else entirely, and best determined AFTER he has maximized his potential in a specialty SCI center.

  10. #30
    Senior Member
    Join Date
    Aug 2010
    Oregon usa
    Like I said, it takes some getting used to. I don't really have much choice, theres no way to wipe my butt by shrugging my shoulders. I still have a problem with most people seeing me nude or wiping my butt, mom and nurses don't bother me.
    Anyways you are right about everybody being different and I'm sure you know your son and his wishes.
    Good luck with getting your son care
    c3/c4, injured 2007

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