Home care for my son: where to start?

[futurewalker]

Hello,

I can send you a c-clip and l-shaped utensil holder. Its a basic setup that most C5-C6 could use to feed oneself. Baby steps at first; They add up eventually to miles...

PM me if you want me to send it to you...

[offroaderswife]

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.

I agree with Eileen. I am a t-10 complete for over 17 years now. My parents were very selective in the rehab they put me in because they wanted me to be TOTALLY independant. They choose a rehab in another state so that my family would not be there to do everything for me. They visited me on the weekends and met with the therpy and Dr's to find out my progress and where they needed to enforce my independance that I had learned over the previous week. By the time I went home (3 months) I was completely independant except for steep ramps and things that I couldn't lift or carry. My parents made me get out in public, get a job and do everything that my peers were doing. My accident happened with I was 17 and I moved out and started college at the age of 19. I've lived on my own since then. I give my parents complete credit for forcing me to be independant. I am now married and take care of our house just the way any other wife would. My husband lifts me to get in his truck, put me on the 4 wheeler, riding mower and reaches things that are on high shelves. When I'm sick or sitting on the furniture, he will of course get me a drink and take care of me just like any other husband would......Other than that I do everything myself. My husband jokes and says that HE IS my disability because I'm always taking care of him it seems.

Help your son, help himself. It will be the best thing you can do for him. He can still have a bright future and be independant with all the things you've mentioned. We are all here to support you and him through this.

[offroaderswife]

I agree with Eileen. I am a t-10 complete for over 17 years now. My parents were very selective in the rehab they put me in because they wanted me to be TOTALLY independant. They choose a rehab in another state so that my family would not be there to do everything for me. They visited me on the weekends and met with the therpy and Dr's to find out my progress and where they needed to enforce my independance that I had learned over the previous week. By the time I went home (3 months) I was completely independant except for steep ramps and things that I couldn't lift or carry. My parents made me get out in public, get a job and do everything that my peers were doing. My accident happened with I was 17 and I moved out and started college at the age of 19. I've lived on my own since then. I give my parents complete credit for forcing me to be independant. I am now married and take care of our house just the way any other wife would. My husband lifts me to get in his truck, put me on the 4 wheeler, riding mower and reaches things that are on high shelves. When I'm sick or sitting on the furniture, he will of course get me a drink and take care of me just like any other husband would......Other than that I do everything myself. My husband jokes and says that HE IS my disability because I'm always taking care of him it seems.

Help your son, help himself. It will be the best thing you can do for him. He can still have a bright future and be independant with all the things you've mentioned. We are all here to support you and him through this.

I also wanted to tell you (most important part) that I have a friend with the same level of injury as your son who went through rehab with me. 17 years later, he now owns his own business and employees his mother and his wife. Help your son see all the possibilities.....There are so many. I will talk to my former rehab friend with the c5 injury and see if he would be interested in exchanging phone numbers and talking with your son when the time is right for him. Good luck to you. You sound like a great momma!

[mamadavid]

Help your son, help himself. It will be the best thing you can do for him. He can still have a bright future and be independant with all the things you've mentioned. We are all here to support you and him through this.[/QUOTE]

Thank you for your encouraging message. Do you (and do others) think it really is possible for my son to learn to eat, brush his teeth, shave, use a phone/computer/remote control with his level of injury? (and thanks for the message about your C5/C6 friend who has made such a success of his life).

Could you tell me exactly what they teach you in a good rehab centre? You said you stayed 3 months -- is that pretty standard?

[mamadavid]

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.

Thanks for your message Eileen. I understand what you're saying about the need to learn the necessary skills and a top rehab centre being the best place to do this, but since my son's injury I find it impossible to accept the idea of sending him far away from us -- in his current state, if he had a problem and wanted to talk to us, he could not even use a phone to call us. Yet almost everyone who has responded to my question feels that this is the only way to go. It would help us to make a decision if we knew exactly what my son could expect to gain, what he would learn to do.

[Eileen]

Thanks for your message Eileen. I understand what you're saying about the need to learn the necessary skills and a top rehab centre being the best place to do this, but since my son's injury I find it impossible to accept the idea of sending him far away from us -- in his current state, if he had a problem and wanted to talk to us, he could not even use a phone to call us. Yet almost everyone who has responded to my question feels that this is the only way to go. It would help us to make a decision if we knew exactly what my son could expect to gain, what he would learn to do.

Hi mamadavid,
I am a C5/6, mostly functioning at a C6 level. I live alone in my own condo (well, two cats as part of the family too). What your son will gain by excellent SCI specialty rehab is essentially the world, and while that might sound like aggrandizing, it really is not. The only help I require is heavy grocery shopping and some help with laundry if it is something like my bedding. I am fortunate in that I have a few friends who are willing to do things that require height, such as putting up new curtains or the like, but most of what I need I keep at arms reach. It isn't the most tidy of condos, but it works for my independence. I rarely actually cook, but I am more than capable of using the microwave, so I buy a lot of already prepared dinners and just nuke them. I use a powerchair, drive my lift equipped van, independently take showers on my shower chair, and make liberal use of whatever assistive device might help my life. One of my best friends at the time of my injury was also a C5 quad who went on to become vice president of one of the biggest insurance companies in the states, married, had a child, and own a nice speed boat for weekend recreation. They use the same hoist they use to lift boats in and out of the water to lift him and his powerchair onto his boat. So, that is an example of what good rehab makes possible. Everyone will be different, but without the opportunity of specialty rehab your sons future is constrained, and he may well be missing out on the most important opportunity of his life. I also believe that someone in the rehab setting would be more than happy to help your son phone you, or that the two of you could use skype to keep in touch.

[poonsuzanne]

Thanks for your message Eileen. I understand what you're saying about the need to learn the necessary skills and a top rehab centre being the best place to do this, but since my son's injury I find it impossible to accept the idea of sending him far away from us -- in his current state, if he had a problem and wanted to talk to us, he could not even use a phone to call us. Yet almost everyone who has responded to my question feels that this is the only way to go. It would help us to make a decision if we knew exactly what my son could expect to gain, what he would learn to do.

Hello Mamadavid,

I am Suzanne Poon. My son, Richard Jr., is a T12 complete SCI from 8 years ago. He is now 25 years old and working in HK. When he was first injured he went to the MacLehoe Rehab Center in HK. Please kindly let me know if you have more questions. I know it is extremely hard for you and your son to go through all this. Please stay strong and fight against this misfortune.

Suzanne