I want to scream

I am at a lost. My husband is a C2-C3 incomplete. Accident was 7.5 months ago. He is doing unbelievably well for a quad. His legs are stronger then mine. Most of his damage is in his arms and hands. He can move is fingers pretty good, but has lost a lot of feeling and therefore it is hard for him to hold and grasp things. His triceps are very weak and it is hard for him to straighten his arm at the elbow (but he can do it). His muscles around his shoulder blades are also very weak which limits the amount of range of motion in his arms that he can do by himself. He does feed himself and brush his teeth himself, but that is all the personal care he can do on his own.
His favorite phrase is "I CAN'T". He says that I don't understand how he feels and he is right, but I do know from listening to you all that he should be thrilled to death. He has absolutely no pain!! But instead of being thrilled he is always complaining about slight tingling in his legs and arms and hands.
All he does all day long is sit in front of the TV and complains about how much he hates TV and is sick of it. He refuses to go walking on his own because he might fall. Of course in the last 4 months of his walking he has never come close to falling. I have bought him squeeze balls which he has never picked up. I have bought him toddler puzzles which he has never done. I have bought him coloring books with big crayons for him to practice writing which he has done once. I got him a finger device to put on his left hand so that he can turn pages (this is something he wants to do) and he told me that he doesn't turn pages with his left hand. I tried to explain to him that his right side is better then his left and that he wouldn't want something attached to his right hand to turn pages because that would limit his being able to use his right hand for other things. I keep telling him that he can do almost everything he did before he just has to do it differently. Well, he used the page turner once because I forced him. We have a recumberant bike that his therapist told him to wear out. He is on it maybe 2 times a week. I have also tied some bands to a door knob and he has been told that one of the best exercises he can do to build his weak muscles that are preventing him from raising his arms is to do a row exercise with the bands this he also will not do on his own.
We have a zero-turn lawnmower. It requires only very limited arm movement to use. I had been telling him for a long time that I knew he could drive it and he kept telling me "I CAN"T". Finally I got him on it and he was able to do it. I thought this would give him a lot of confidence and make him feel like a man again able to take care of his manly responsibility (the yard). I was wrong. The last two times he has mowed the yard I had to almost make him because the grass was growing so tall.
About two weeks ago I found out what he could really do. He typically can't walk more then 10 minutes before he starts complaining that his legs are tired and he has to stop. I took him to the hospital that he was at for 5 weeks and showed him the 3 different ICU's that he was at. He has not been able to remember the hospital and I thought it would be good for him. He was able to see some nurses that had cared for him and the intern that took such good care of him. He spent 2 full hours walking and on his feet, he did not sit once. From there we went to therapy and we were early so he worked out on a nustep for 25 minutes. Then he work an hour with a very aggressive therapist. I told him to count on have trouble the next day. I really anticipated him barley being able to get out of bed. Well guess what, he had no problem at all the next day. He didn't feel even the slightest different then the day before. Did this encourage him to push himself? NO!
I really want to just scream at him. I have talked to him and told him that I think he is just giving up. I have also told him that he is not working or trying hard enough. It doesn't seem to be doing any good. The only work he wants to do is to lay on his back and have someone do range of motion for him on his arms. And I know the reason why he likes this is because it means no work for him and work for someone else.
He also refuses to talk to others with spinal cord injuries, because this is depressing to him. I have given him lots of advice and solutions, but they would require getting over his mental/emotional barrier.
He is also becoming VERY dependant on me. He will go no where and do nothing unless I am with him. I have told him that I am his wife and that I do love him and want to be with him, but that I am becoming a crutch and that his dependency on me is bad for him.
I am so frustrated. I don't know what else to do, or how else to help. Any advice?

By audreys
Posted August 11, 2008 at 11:55 am
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Dear Boyd, It sounds like you have your hands full! Could you get an aide to stay with him so you can get out of the house? This would accomplish two things. One, you would get a little time to yourself to do something you want to, and secondly, an aide would not do all the things you can do, so your husband might try to do some things for himself. Also, I wonder if your husband is depressed. You might say that he is lucky because he can do so many things (by the way, I agree with you - my ten year old is a complete C5/6, and has been for 3 1/2 years!) but that is easy for us to say. Has your husband had any therapy? Have you spoken to his doctors about his refusal to help himself? Last thing I wanted to mention, is I have found that setting time boundries helps when my son gets very demanding. I will tell that that I will be unavailable except for emergencies, for say 30 minutes, so he should have me do whatever needs to be done now. Then I don't expect a call, unless something happens - i.e. if you drop the remote - watch what is on now, until the 30 minutes are up. I find that this helps me get things done, and sometimes even lets me read the newspaper uninterrupted for a few minutes. It also tells my son that he can figure out how to do some simple things for himself. It sounds like you have given your husband a lot of options. If you aren't so "available" perhaps he will start to use them. And if he doesn't, perhaps he can sit there by himself for a few minutes! I don't mean to sound cruel, but you also have to take care of yourself. Good luck! I am sure that you will find other people on this site who will have some real useful help for you. Audrey

By Boyd
Posted August 11, 2008 at 12:05 pm
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Thank You. We actually do have an aid that comes in the morning so that I can go to work, but he won't even let her bath him even though that is her job. He will only alow me to do that. He is on antidepresants, they may need to be increased. I guess my biggest problem with him is that he has given up. He won't try. He has therapy 3 days a week and there he tries, but at home his is not motivated and will sit all day long doing nothing because in his mind "he can't" even though he can. He is very lucky and he knows it, but it is not good enough for him.

By writerlass
Posted August 11, 2008 at 4:46 pm
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I suggest contacting the Reeve Foundation Paralysis Resource Center. they have info on depression and on adjusting to spinal cord injury, because that may help your husband. To be fair, any paralysis is tough to deal with; your husband just has to realize how lucky he is and that if he's made such progress in sucha short time, he can continue progressing.

The PRC also has suggestions on continuing PT at home, including informtion on therapy programs in the community, such as at the Y and community college.

i hope this is helpful to you!

By MARTY_T_67
Posted August 12, 2008 at 11:35 am
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hi boyd
don't take this wrong but i laughed a lil when i read how your husband is acting.even tho it's not a laughing matter.i'm going on 4yrs out with a similar injury and also went thru some of those ''I CANT'' moments even tho i could.and thinking back i think the reason was because it was exhausting and if i had someone else to do it for me ,then why should i. i think you seriously need to NOT do any task for him that he is able to do himself. by the way,i've only fell 1 time in 3yrs and 9mon. and that was a slow slide along the kitchen counter.lol. his tingling may never go away, i still have mine. i still cant put my arms above my head unless someone does it for me. it almost seems like he hasnt accepted his injury yet and being waited on hand and foot for everything will only prolong that. or maybe with you doing everything he asks is giving him a feeling of being in control of his life so he says i cant just to have that control. i hope that made sense.lol.
i wish you goodluck and hope he snaps outta whats going on in his head and realizes he can do more than he gives himself credit for.

By tfox
Posted August 13, 2008 at 12:21 pm
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Tell him, yes, I agree, paralysis sucks big time! I know from personable experience! But don't let it win. I broke my neck (C4 incomplete) 7 years ago. I'm now a quadriplegic too, but can't walk! Many paras and quads (including me) would give anything to be able to do what he can! I also took this computer and wrote my autobiography (that I'm VERY proud of). It took over 7 months, but I got er done. Something he might want to consider. I wasn't after sympathy, but empathy. I wanted people to know the frustration it is being paralyzed. I'd like to share it with you! My e-mail is tfox@bendnet.com. I'll also include the web sites of a couple of things that made me feel better. Remember, tell him he's not the Lone Ranger!

By horsestail
Posted August 13, 2008 at 10:36 pm
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Boyd,
Scream and let it out. You need to take care of yourself first. You may want to look into caregive group or what would be great for both of you if your state has SCI peer support groups like the one I attend as family members also attend so caregivers can share. We don't just talk SCI. We get together once a month. www.spinalcord.org will let you know if your state has the groups and info.
Another thought would be to find something that incorporates his PT and is really fun and enjoyable for him that he does not realize he is doing PT. Maybe this site will help http://www.wheelinsportsmen.org. Others have found it a good site. Do any of the rehabs near you have any events? I just went to a ski bash and water skied for the first time ever.
As for you husband being so dependent on you that is not good and you may need to talk to the doctor. Your husband may need some counseling to help him deal with everything. A good book that maybe helpful is 'The Spinal Cord Injury Handbook' for patients and families. ISBN 1-891525-01-8. I know amazon.com has it.
I wish you the best and remember to take care of yourself first as you can't take care of your husband if you don't.

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