Home care for my son: where to start?

[mamadavid]

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.

Thanks for the good advice and encouragement Donno. Very interesting about the bed -- I've since read posts by other people saying that they don't use a special bed and that the right pressure relief mattress is enough. As for finding a C5/C6 advisor/buddy, I suppose that person doesn't really need to be in Hong Kong. If any C5/C6 members can give us advice on what equipment is most essential it would be appreciated. Also, we would be grateful for all advice on how to get through the first difficult months, how to avoid pitfalls, head off crises, etc.
Like so many, you stress the need to gain independence. That goal seems a long way off now, but I know you're right.

[mamadavid]

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.

Dear Scaper1,

It would be great if our son could eventually do his own care -- washing, teeth brushing, feeding, catheterisation ... Right now he does not have the hand function, but we still hope for recovery (in the past month movement has come back to the pinkie, ring finger and index finger of his left hand).

[Rich H. - New York]

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.

[mamadavid]

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

Dear AAD,

Thanks for your reply. I will look at the "Doctors and Clinics" forum. As for the expected outcome, I'm pretty familiar with the standard predictions for my son's level of injury, and I also cling on to everything I hear or read about exceptions to the rule and about "every injury being different". It's 19 months since his injury and he has not recovered exactly according to predicted outcomes -- some things are better than expected, other expected improvements are less pronounced. Perhaps to do with the strengths and weaknesses of the PT and OT he has received, as well as to the complex nature of the spinal cord of course?

[mamadavid]

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.

You are obviously extremely knowledgeable about caring for SCI patients and aiding their recovery. I've read many of your posts including your reply to my question about why my son's neurological recovery did not seem to fit the pattern. Thanks for the well-informed advice and I wish you and Ryan the best. He sounds extremely determined and positive.
You are adamant that a model spinal centre is the only option. When my son was first injured I looked (online) at all of the model centres in the U.S. and thought seriously about taking my son there, but he was in such a bad way for the first four months that he would not have been able to tolerate the long journey. 19 months post-injury, I'm sure a model centre could still help him (with practical skills in particular), but the reality is there isn't one anywhere near us. For recovery, I'm quite confident that we have good resources close to home. From what I read, programmes like the Shepherd Centre's Beyond Therapy provide hydrotherapy, Lokomat, Armeo and FES cycles, plus other strengthening exercises and traditional physiotherapy and occupational therapy -- all of which we could get for our son in Hong Kong.
What he has never had are the dynamic atmosphere of places like the Shepherd Centre, their practical approach to teaching people needed skills and the peer group they provide. For that reason there's still a nagging voice in my head telling me that we should sell our house and get our son to one of these places. You can see it's not easy. I would like to hear in more detail what the Shepherd Centre did for your son, and also how you are following up now that he's at home.

[LindaT]

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

[mamadavid]

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.

[mamadavid]

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.

[mamadavid]

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?

[mamadavid]

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?

[Eileen]

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.

[Rich H. - New York]

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.

[dispatchjen]

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.

[Eileen]

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.

[Sh1wn]

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