20 replies to this topic

[JkatRN]

I'm a nurse. About 3 weeks ago I started working with a newly paralyzed 18-year-old boy who just came home from the hospital. I'm with him 40 hours a week (I spend more time with him than I do with my own family) and I'm close enough in age that we are developing a friendship in addition to the caregiver/client roles.

The problem: He has no self-motivation for anything: eating, PT/OT, music, movies, books, being outside, nor does he take any kind of active role in his own care. When I'm not there to encourage him, he would rather just lie in bed staring at the ceiling. I'm going to try to get him a computer (I would love to get him involved with this website!), but while we work daily on regaining the strength and coordination in his arms, he feels nothing from mid-chest down and I doubt his hand function will ever come back. His only passion prior to the accident was playing soccer.

I know that if any true improvement is to be made, the desire has to come from within himself, but I don't know how to stir those embers into a flame. Also, my own life is unstable enough that, as he is depending on me for his motivation, I'm afraid that if the time comes when I can no longer work with him, he will let go of everything that he has accomplished so far. He has a very supportive family, but he shuts them out. My primary experience is with geriatrics, and I've not worked for a prolonged time with anyone who has a spinal cord injury.

Any suggestions?

[davidsons]

it is difficult 2 accept.
time may heal............

[daniel562]

its a reall big adjustmeannt for some...i bet he fights with u when try to modavate him but and the end hhe'll found proud cuz he pushed threw it...u got start small like walk around the block cuz its safe like a base weere if something happends theres cover to houses dwn where i live idk just ttypen

[Shan]

I used to play soccer in high school, so I understand how he feels. I went through a very difficult time last year (even though I was only 39, I had 2 heart attacks within a 3-week period!) When I was in rehab, my cousins got together and bought me an iPad. I wear my wrist-splint and take my stylus in between my fingers to use it. It has made a big difference in my quality of life since I used to have a very hard time using a regular computer. Do you think his family can buy him an iPad or maybe put a fundraiser together for him?
Please feel free to contact me anytime. I would love to help. And thanks for being so caring.

[goose]

i was told that i'd never move any thing. i'm a c4/5. well, i'm not walking but with alot of hard work i can move my arms. i know that may not sound like much but it has given me more indep. please tell him to keep trying because things keep getting better for a few years. i wished i had been told that cause i'd tried even harder . the earlier you try the better the gain. i have a touch scene computer . easy ,easy to use. lots better than trying to chase that mouse around.
look around on here for other guys close in age. it helps to know you're not alone.

good luck and keep us posted.

jane

[goose]

just putting out a call to any guys who were sci around 18 and a quad c 4,5 0r 6. this guy needs your knowledge of life with sci. keep it positive . please.
it would be good to talk with someone with a few years under their belt.

[Scribbler]

I'm not 18 now but I've been there, done that and got the T-shirt.

Because everyone is different I can only generalise. Everyone takes time to come to terms with their injury, some take longer than others. Others give up at first, but then begin to realise there is life after their injury. It doesn't matter how much you try and motivate them, they have to want to do it. An analogy would be someone giving up smoking; they have to want to as nothing else works.

You say he pushes his family away. I've seen this happen before, especially to the people closest to them. I've seen a few newly injured guys be really horrid to the person who loves them the most. I'm not a psychologist but its usually because deep down the feel insecure. They are also angry with the world any everyone around them, but it doesn't last forever.

Don't give up on him; he may need a strong person to push and even bully him into doing things. It also depends on how strong his character was before his injury. A strong independent person will cope better than someone who is weak willed.

I avoid giving advice if I can; I prefer to speak from either my own experiences or the experiences I've witnessed over the many years I've been injured.

I wish you good luck, and hope he soon realises what a caring person you are; he's very lucky to have you there.

Scribb's

[sh1wn]

Well I guess us gimps can post in the caregivers room, if not let me know.

I was injured when I was 23 and I was able to bullshit that I was ok and was able to accept what had happened to me.

I didn't have the greatest relationship with my parents and my mom stayed with me from the time I woke up in the ICU thru rehab. It really botherd me that everybody had decided I was going home with her and thats all there was to it.
I had been on my own sense I was 17 and was proud of it.

In the end I figured I would have a better chance of getting to my pain pills and offing myself if I went home with her.

I would rather not go into details but I was a real jerk for about a year and a half. I'm not sure what snapped me out of it but its sure been a lot easyer sense then.

I now know how lucky I am not to be sent off to some care home to rot.

I guess that the only thing I can do is echo the others are saying and say its going to time for him to adjust and there not much you can do to speed it up, just keep doing what your doing and don't take anything personally, I remember being able to feel myself getting angry and telling myself to calm down and that I knew it wasn't going to get me nowhere and that I didn't want to act that way but I would still go off.

One day he will be greatful you were there.

[JkatRN]

Wow, thank you everybody for your comments. Goose and Shan, I'll try your suggestions for the computer. A touch screen is a great idea and a keyboard is definitely not an option now. I'll also let him know that greater improvement can me made if he works hard now, in the beginning, rather than later. I tried to get him to let some of his friends from school come to the house, maybe do a movie night or something, but he's embarrassed. I guess there's not much I can do about that except wait. I'm not giving up though. I just wish I could find something to spark his interest, give him focus... I'll keep thinking.

[goose]

a male friend of mine was injuried while in college. he fell out of a hunting stand.the belt broke.
after rehab.,he went back to his moms house. i'm sure it was overwhelming to all involved. the problem was his mom told everyone every little detail of his care. it was her way of unloading. i guess. however, this is degrading enough w/o everyone knowing your business. long story short- because of this he hasn't talked to his mom in years.[only his brother]
right now there is alot of adjusting going on. he's angry,his ego has been shot, he's scared,the list goes on.

i'm not implying anything except he's fragile be careful. he's probably lashing out at family because he knows you will NOT leave him.

i've been doing this almost 25 yrs. and i'm not open about a lot of things. i miss my privacy!!!

i had a hard time being around peers at first. i knew they didn't have a clue and my life was turned upside down. i felt like i didn't fit in anymore. time took care of that.
i did better with just 1or 2 friends over at a time
good luck. i'll keep in touch.

[Terrible Texan]

its been 13 yrs for me in june, & the struggle to keep going is still there. he's going to be angry w/ the world (why me), or as in my case, i was angry w/ myself for putting myself in this wheelchair. i lived at home for around 6-8 months after accident & i didnt realize how angry i was until mt mom jumped my ass & let me have it. i had to snap out of it & come to terms that this is now my life & deal w/ it, noones gonna lie to u, its a hard life, u've got to make the best of what u got. after living in my g-ma's (deceased) home for 7-8 yrs w/ roommates, they fell behind on bills causing me to be put in a nursing home, oct. will be 6 yrs i've been here. there are alot of ups & downs w/ this lifestyle, it just takes others longer to adjust. took me years to accept.

[wheeliebear75]

Maybe if you can show him a way to play a modified version of the sport he loved you can spark something in him?

http://video.search....eelchair soccer



http://video.search....it=Power Soccer

Edited by wheeliebear75, 06 May 2011 - 03:02 AM.

[ning]

My 18yr old son was paralyzed in a mountain biking accident 7 months ago. His injury is incomplete and although initially paralyzed, after many months of hard work he's graduated from wheel chair to walking with crutches. His advice - set short term goals and go for them. Small steps and when you achieve each one it's an incredible boost. He's lucky to have you. Good luck.

[RHDesigns95s]

I definitely think that everyone handles things differently. I cant imagine what it would be like to be any type of c level injury as i am classified as a t-2 and have full arm and hand function. A watched a few videos in the hospital that kind of gave me some ambition. One video was murderball and then another was a true story about a guy that was miserable until he started playing wheelchair basketball. In each video they go on to show that these guys live totally independent lives and enjoy most of their time. There are always ups and downs but we can still be able to be ourselves even in the current state that we are in. I was 20 when i was first injured and am currently 24. Just before my 4 year anniversary of my crash, my fiance ended up leaving me and i honestly hit rock bottom and didn't really want to push on. Being paralyzed in an accident was tough, but it didnt hit me until she left. Within 4 months i was back on a motorcycle riding again and honestly it changed my world. I am getting ready to head to Michigan for the Extremity games in order to race and i am having the time of my life. My schooling has gotten much better and everything as a whole is coming together. He may just need to find something on his own that he has a passion for. It may be something that he has never tried before and comes up upon on his own. You can continue to try to get him to try new things but it is gona take his heart to find something to make him fight for his motivation. My website is www.rhdesigns95s.smugmug.com you can email me there anytime if you or he needs someone to talk to...i also have facebook that i can talk to you guys on...finding others that are in his same state can be inspiration but they are also great to have as friends because they are the only ones who truly know what we go through. Good luck

[Siv]

I was 18 when I was injured and 14 years later i'm still trying to adjust.

Remember this guy is still only a kid, he's going through a lot.

You need to find one thing that interests him and try and build from there... You said he is a soccer fan, try and get him to a game or watch games on TV with him and suggest it then. You could say you have always wanted to go but you want to go with him.

Good luck

Edited by Siv, 05 June 2011 - 01:39 AM.

[isobar]

Hi,




Tough ......... one so young and life has dealt him a loaded unfavorable set of circumstances. Sounds like he's in that dark phase of what he and his life have become. You can try to get someone close to his age and injury level to come over , spend time and show him life's not over. That he'll have to make adjustments and adapt over time to live a quality life ........ its up to him and he needs his family, friends and all who see him , his true value to move forward. This journey is one not best traveled alone although you're living it , you still need people to be there. See if he' ll talk to someone about how he feels and what he's going through if he can even express it. May be he has to go through this right now ........ we're all different and cope differently. Sounds like his current actions or the lack of them is just normal. He needs time to hurt , ache , grow and heal.Some people much his senior have difficulty adjusting , adapting and moving on with life. His mindset and time are constants that are crucial ......... each with its own weight to bear, will either be his enemy or friend , play a role in the healing process , allowing him to live life the best he can. In the future he'll have a better grasp of things and hopefully have an idea of what he wants for himself. He needs time !!!!!!!!!!!!

[robingalan]

I live with a paraplegic... his accident happened when he was 17. He is now 50. the ONE thing that stood out for him was this.... when he was in rehab, right after the accident, a really cool looking buff guy came flying down the hallway of the hospital in a wheelchair... he was also a paraplegic... once my fiance saw this cool looking guy in a chair.. flying by, he KNEW that all would be okay.... that he would not HAVE to be just a guy in a chair that someone felt sorry for.... this random visit by another paraplegic was enough to ensure him AND ALL of his hospital roommates (in the same boat) that it was going to be "ok"... perhaps you could look for someone like this to come and speak with him... contact a local rehab facility (maybe).... it really DOES make a difference when you can see someone else with the same injuries that is "OK".

[Mary-Anne]

When my BF gets into a funk, sometimes, the best solution I have found is for him to talk on the phone to another (male) para from a local support organization. Sometimes the only way to get someone unwound is for them to talk to someone else who has been there. We who have not been there cannot understand in the same way.

Is there any kind of support group this kid can attend?

Can you find anyone on apparelyzed or another online forum who lives near you, has a similar injury, has lived with it for a while, and would be willing to talk with this 18 year old on the phone?

Being more specific on your profile location than U.S.A., and filling in both the level and relationship, might be useful in having other people find you. You may discover that there is a local organization.

Mary-Anne

Edited by Mary-Anne, 13 July 2011 - 01:44 PM.

[Writer10]

Hi - I'm new to this site but felt compelled to respond after reading about your situation. Someone posted a Power Soccer video in this thread. If you haven't watched it, please do, and mention it to your patient. The featured coach is Chris Finn, also the head soccer coach for Team USA, who won the 2007 Power Soccer World Cup in Tokyo. Chris was injured at age 21, close in age to your patient, and power soccer changed his life.

Please reach out to Chris. In addition to soccer, he's a motivational speaker who empowers everyone he comes across, regardless of their physical mobility level. He is a wonderful human being and a joy to know (I had dinner with him last night and can't remember when I've laughed so much). Every minute of his life is spent improving the lives of others. His website is www.chrisfinn.com, and you can email him there. Best of luck to you and your patient.

[Snuffycuts99]

He needs people who will keep loving him no matter what. Time should make it better too, but he needs that support to stick through these hard times. If you can find someone else in a similar situation to actually come and talk to him, that would help too. Ask around. When I was paralyzed, I was so grateful for other people who were paralyzed to come and see me. To be able to see people functioning just fine in society while being paralyzed was a HUGE help to me. You just need to know that your life can be OK and that you can still be loved and you can make a difference in the world with your life.

[justaguy]

I am no expert at this, but it's only been 3 weeks right? my best friend has been paralyzed for about the same amount of time and he is also depressed and not motivated to do anything, so I think that is just normal. I am looking for suggestions too, but I think the computer thing is a good idea cuz it can help him get into touch with other people like himself and give him more support. also I hope his family keeps bugging him because he needs to have that kind of attention I think.