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

  1. #1

    Home care for my son: where to start?

    Dear all,
    Our 19 year old son has a C5 spinal cord injury, 19 months post. His physiatrist says he is C6 incomplete between ASIA B and C. We are a British-American family living in Hong Kong.
    Our son has been in three different hospitals since his injury: four months in an acute hospital including two months in ICU, then nine months in a so-called rehabilitation centre which was not a success (underfunded, understaffed, crumbling public institution, but it was our only choice at the time if we did not want to move our son to another country). While he was there we supplemented his treatment with acupuncture and physiotherapy sessions which we arranged privately.
    Last October we transferred our son to a hospital in Bangkok on the recommendation of a friend who had received very successful treatment for SCI there. I have been with him all this time while my husband and daughter remain in Hong Kong. Our son gets very intensive PT and OT (2 hours of each, 7 days a week) and has made a lot of progress in the 7 months we have been here. However, it is a general hospital with a rehabilitation department, not a specialist spinal injury unit, so it lacks many things. They have little specialised equipment for SCI patients (nothing for strength training, e.g. FES cycles, no Lokomat, Erigo, Armeo, etc., no hydrotherapy pool although we are able to take him to another hospital for hydrotherapy twice a week). While the OT has helped him to regain some function in his hands, ADLs are neglected (my son is learning to feed himself because I asked for this, but he remains basically helpless and no aids or devices have been provided or suggested -- I don't think the staff are very knowledgeable about this area). Bowel and bladder training have been haphazard. He has not learned how to transfer himself or assist with his transfers. I am sure that he has the potential to do a lot more than he is doing now, but we seem to have come to the end of this hospital's ability to help him move forward. The chief physiatrist has as much as told us that we should look at other options if we want our son to get strength training, ADL training, a bowel care programme, etc.
    Both my son and I are extremely homesick and would like to go back to Hong Kong. Actually, our son's first choice would be to go to a rehab centre in an English speaking country where he would have a peer group and learn some survival skills, but this just isn't possible -- we could not send him thousands of miles away on his own and my husband and I have few friends or relatives in our respective home countries.
    We see going back to Hong Kong and moving our son back home as our only option, but at the same time we are terrified of the prospect. We see how dependent he is on the hospital staff for everything and cannot imagine how we will manage at home. We are absolutely opposed to doing any of the intimate things for him like washing and bowel care ourselves so he will need carers -- but how to find the right people and what about when they don't show up because of illness or whatever? What about turning at night? And how would we deal with a crisis such as an episode of AD? We would arrange for him to have a daily programme of physiotherapy, hydrotherapy, occupational therapy, etc., and would invest in an FES cycle for home. Fortunately we have good insurance which has so far paid for all of his care, but the cost of all the equipment we would have to buy (hospital bed, wheelchair, hoist, shower chair, standing frame, etc, etc.) looks staggering and we probably will have to pay for a lot of this ourselves. It is also time that our son got back some kind of life, so we would try to get him enrolled in some form of part time study (he had been about to go off to university when he had his accident). Fortunately Hong Kong has quite a good system of wheelchair accessible transport. I know that people with SCI all over the world live at home and somehow manage. Please help us by telling us how you do it. I read the Care Cure forums every day and have learned so much from other members' experiences -- the main thing being how unbelievably tough it is! Sorry for the long, long post. We would be so grateful for any advice. Thanks in advance.
    Last edited by mamadavid; 05-01-2011 at 09:11 PM.

  2. #2
    I hope somehow he can go where he can learn to be more independant.
    What you are doing now will not help him in the long run I'm afraid to say.
    It would be great if he could meet people his own age and go to a rehab where he could learn to direct his own care.
    Someone here might have some good suggestions.
    Good luck.

  3. #3
    Thanks, LindaT. I have had this same advice from others, and I'm sure you're right. I wish there was such a place available to us.

  4. #4
    I'm hoping that you hear from some forum members here who have suggestions for your part of the world. I can only imagine how difficult this has been for your son and your family. Fortunately, he has a loving family who is rallying around him. My heart goes out to you.

  5. #5
    I would have tried to get in contact with Suzanne Poon, she is a member here but she has not been here for a long time. Her son is a T12 and I am sure she can help you, she lives in Hong Kong,

    Try to google her here at carecure and maybe she has written something who can help you. I think I saw her here some days ago about the trials in China.

    Good luck
    TH 12, 43 years post

  6. #6
    Senior Member
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    At this point, I would suggest that you take him home and take care of him yourselves. You need to be able to do it in case of situations beyond your control, and it will force you and him to learn to be independent much more quickly. I made more progress than I would have thought possible when I went home from rehab and had to start doing things for myself.

    You may not need a hospital bed - just get a good pressure relieving air mattress. You need to get a wheelchair, and there are a lot of videos on You tube that will help learn how to do transfers. If you advertise for a C5/6 peer advisor/buddy that speaks English in HK, S/he will be a great help in determining his needs and abilities, and what equipment you will really need.

    I can't say enough about the need to go ahead and start living independently. There are dozens of people who will be more than willing to help you over whatever bumps you encounter.
    Don - Grad Student Emeritus
    T3 ASIA A 26 years post injury

  7. #7
    Quote Originally Posted by mamadavid View Post
    We see going back to Hong Kong and moving our son back home as our only option, but at the same time we are terrified of the prospect. We see how dependent he is on the hospital staff for everything and cannot imagine how we will manage at home. We are absolutely opposed to doing any of the intimate things for him like washing and bowel care ourselves so he will need carers -- but how to find the right people and what about when they don't show up because of illness or whatever? What about turning at night? And how would we deal with a crisis such as an episode of AD?
    These things are all a lot less scary after you learn how to do them. At least for emergencies. Also, who will train the caregivers if you can't?

    Ideally, your son will be able to eventually do his own care, but there's going to be a transition period no matter what.
    Last edited by Scaper1; 05-01-2011 at 10:37 PM.

  8. #8
    Hello,

    It sounds like you ahve been a great advocate for your son and it is very difficult being so far away from the rest of your family. I agree that your son could benefit from adaptive equipment and assistance in learning to maximize his independence and being less dependent on others. That is really the goal of rehab services.

    Are there any English speaking rehab services in Hong Kong? Could the social workers at the current Bangkok facility help you locate these? Also, does your private insurance have case managers or cover those services?

    If at home, your son would likely need a caregiver for many things buty don't underestimate what families can learn to do, with motivation adn good training. If not to do it all the time, you could be available for emergencies when caregiver is not available.

    You might also check out the online PVA (Paralyzed Veterans of American)website.
    I believe it is pva.org. Check their downloadable education books- especially those which outline the expected outcomes for each injury level- check out the one for C5 and incomplete injury. That might give you some idea what you can expect with rehab, though everyone is different in their recovery.

    Let's see what others have to say. You also might post in the "doctors and clinics" forum, and get responses from others who might have resources to share.
    I wish you the best and keep in touch.

    AAD

  9. #9
    Quote Originally Posted by mamadavid View Post
    Thanks, LindaT. I have had this same advice from others, and I'm sure you're right. I wish there was such a place available to us.
    I'm glad I did not offend you and wish I had a suggestion. There are many good people here from all over the world that will have good advice.

  10. #10
    Senior Member
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    You did not say, or I did not see, what your and your husbands home country's are. It is imperative that your child receive the specialized care that is needed at this time.

    I hate to sound harsh but what is more important, your son, or you. I am the mom of an incomplete C-2 who had the benefit of a great "model" rehab center. Yest it was hard on my family. Yes I cashed in my retirement to get him there. Most importantly, YES I WOULD DO IT AGAIN.

    My husband and I will not have the retirement we planned on but our son will have a life beyond SCI. I am now his primary caregiver and have given up the 60K a year job I used to have. My son is more important.

    Again, I do not mean to sound harsh but you have to decide what is important to your family at this time. I do not know what your or your husband's home country is but look into a "model" center as that is what your child needs. The sooner the better.

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