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Thread: Caregiving to my c5 c6 husband

  1. #51
    Jenniferh, are you and your husband involved in any counseling? A good counselor (clinical social worker or rehab psychologist) could help you sort out some of these issues and help you come up with a plan to get things more under control.

    It would help if we knew where you were located, etc. Please consider completing your profile.

    (KLD)

  2. #52
    No, we really can't afford counseling right now. We live in Birmingham.

    www.caringbridge.org/visit/alanhenley

  3. #53
    Have you sought counseling through your clergy person? This is generally free. Where does he get any therapy? Spain Rehab? If so, he may be eligible for clinical social work counseling there. If they cannot provide it, he should be able to get a referral to community free or low cost (often sliding scale) services. Are you sure this is not covered by his insurance?

    (KLD)

  4. #54
    I type w/ 1 thumb knuckle, and the index finger on my more functional hand. Does your husband have tenodesis? (Meaning: If his hand is lying palm down, he lifts his hand at the wrist and it tightens his fingers into a sort of fist.) My bad hand is clawed up w/ tenodesis but I chose for it to be that way. It is more functional than being floppy, for me. They botoxed it at first, to keep it floppy. I got sick of dropping everything!

    I was always left home alone post-rehab, at c5-6 incomplete. At that time I functioned like your basic c5-6, I think. My fingers hadn't recovered, etc. When the kid was off to school, hubs to work, I was home alone. I can't seem to recall any reason why I wouldn't have been. I had/still have a manual wheelchair.

    What we learned was that I had to try to do everything. My husband helped me dress, at first. The therapists chewed us out, and they were right. Even if it took my 5 hours-and at first, it did!-what else did I have to do?

    Every day, every task, was a battle. I understand your anger with Jesus. It's a lot easier to appreciate His sacrifices when your own are small or hypothetical. When you are given a real cross to bear, it is natural to question why. But that way lies madness... Your anger will ease, like everything else, with time. Your faith will likely sustain you, although this injury has turned many agnostic I think.

    Time. Patience. Extreme persistence and determination. These are the best healing tools you have, for this injury. Love and faith help too. Good luck. I hope your husband will post here sometime.

  5. #55
    Quote Originally Posted by jenniferh View Post
    He has bad contractures in his fingers so when he puts his hands downs they are in a fist on his left hand. Do your hands lay flat?

    He's been working on an ergometer, do you think that will help too?
    As I posted above, contracture in 1 hand can be v. beneficial. Don't just assume that's a bad thing. Most people want their hands to look "normal". I'd rather they look weird and hold the steering wheel of my van, though!

    I really recommend you have him folding all towels, dishcloths etc. This is great OT, he can't break them. Folding clothes, laundry in general, led me to independence.

  6. #56
    Betheny, you gave some great ideas. There is no way I could leave him alone because he can't do anything for himself. There is no way he can transfer, get a drink of water. I have to dress him, put him in his chair with a hoyer lift. He can drive it and he can eat if I cut up food and set his u-cuff on him, so it would be dangerous to leave him alone. Wherever he lies, that where he's stuck.

    I think having him try to fold towels is a great idea, especially since my almost three year old son pulled out all of my kitchen towels this morning and threw them on the ground!

    www.caringbridge.org/visit/alanhenley

  7. #57
    Quote Originally Posted by jenniferh View Post
    There is no way I could leave him alone because he can't do anything for himself.
    I don't want to sound harsh but if you're ever going to get past this stage you both have to turn your thinking around.

    It's not that he can't do anything, it's that he hasn't yet re-learnt how.

    I'm not saying he'll ever transfer or dress alone but if he tries to do things he'll become a lot more independent.

    I'm going to sound like fuente now but he has to want to do this. If he's depressed it's way too easy just to let you do it and say he can't. There comes a point for every new SCI when they have to fight their own apathy. Life gets better when you beat it.

    My mindset was always that I would try and find a way, even if this meant hours of practice for cathing, cooking etc. I HATE asking for help with anything and 95% of the time there's no-one to ask.

    Example: Last week I wanted to watch a DVD. Chose one, gripped it off shelf between two quad paws, stuck it in my mouth, headed for DVD player, got distracted and dropped it, swore, looked around for a way to pick it up.

    Got a wooden spoon and the quad glove I use for pushing. Chewed some gum, wedged spoon in glove as I don't have great grip and stuck gum on end of spoon handle, wedged my chair up against cabinet so I could push back up on elbow, jabbed at DVD with improv sticky spoon until it stuck and I could carefully haul it onto cabinet, get it out with teeth and hands and watch it. Totally knackered me out and heated me up.

    Small victory. F*ck you SCI. I win.

    It's all shit, that's why the victories taste so sweet. If someone had walked in my apartment and offered to pick up that DVD during my ridiculous attempt I'd have probably growled at them.
    Last edited by RehabRhino; 06-29-2009 at 02:12 PM.
    C5/6 incomplete

    "I assume you all have guns and crack....."

  8. #58
    Senior Member kate's Avatar
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    Quote Originally Posted by RehabRhino View Post
    Last week I wanted to watch a DVD. Chose one, gripped it off shelf between two quad paws, stuck it in my mouth, headed for DVD player, got distracted and dropped it, swore, looked around for a way to pick it up.

    Got a wooden spoon and the quad glove I use for pushing. Chewed some gum, wedged spoon in glove as I don't have great grip and stuck gum on end of spoon handle, wedged my chair up against cabinet so I could push back up on elbow, jabbed at DVD with improv sticky spoon until it stuck and I could carefully haul it onto cabinet, get it out with teeth and hands and watch it. Totally knackered me out and heated me up.

    Small victory. F*ck you SCI. I win.

    It's all shit, that's why the victories taste so sweet. If someone had walked in my apartment and offered to pick up that DVD during my ridiculous attempt I'd have probably growled at them.
    lol, thanks for that story.
    The only way to stay sane is to refuse to lie down, no matter what.

    That said, for those of us who are helplessly watching the ones we love best in this world struggle through this stuff, it's a bitch to learn how to let go.

    Our instincts are all backwards, and some of us have to confront a need to be needed that is going to make things worse instead of better.

    Betheny's right . . . so what if it takes 5 hours? The next time it will take 4 hours and 55 minutes, and sooner or later it will not seem hard, just different. But that day can't come unless it's forced to.

    My own mantra was always: This will go away or it will become routine. Cathing, spasms, pushing that goddamn wheelchair uphill,whatever. I'm not going to worry about it either way. If it turns out to be temporary, I'll have stressed over nothing. If out turns out to be forever, then we'll both get so used to it that we forget to be annoyed.

  9. #59
    jen, I wrote earlier and it went poof...somewhere out there in cyberland...you have been given very good advice from the very best...second time I've said that...but it is so true...
    Remembering back that first year one of the biggest fears I had was the hoyer...I just knew I'd drop him and then what? but my heart would pound like crazy...then he had no balance and we were taught to fold sling in half, put him on his side, get the sling under him...lay him on his back, get him on his other side and pull it through...this we were taught at home, because in rehab the idea was for my younger son to be available to use a sliding board....they tried to train me but both sons
    said absolutely not...it wasn't so much that they didn't trust me...it was because my son's weight was 'bout 200 pounds...mine about 100... and they were afraid I would injury my back...at 62, I am no spring
    chicken, lol...after we were home the younger son just wasn't always available...so, the hoyer...I tell you this because today is so different...He has enough balance that I put the bed so he is sitting upright, he leans all the way forward (good stretching) and I put the sling on him while he issitting...lay him down...
    pull the leg straps under him and we are good to go in just a couple minutes...3 years ago it seemed to take forever...and we had the wrong type sling...we were given the kind that had a seat area, which was hell to get off of him once he was in his chair, if not damn near impossible...one day at therapy I was practially in tears because I couldn't get it out from under him and just left it under him...(I didn't know that it could cause skin breakdown) the pt was the one who helped us get the proper sling...
    I haven't meant to write a book...just wanted to let you know how things will get easier...and you absolutely MUST get some time for yourself, even if only to take a nap! get hubby up, fed, water within reach and a movie for the kids, or take a good long walk with them and wear them out so they sleep too! Tell hubby when you wake up you expect them towels folded, lol What are you doing for transportation? hugs and prayers, judy

  10. #60
    I don't get the connection between being alone and being unable to do anything for himself. All you have to do for yourself, to be alone, is breathe, right? And he's blessed that he can do that.

    What more is required to be alone?

    Nobody dies without a drink or a sandwich for 2 hours. If he's cathed, his bowels are empty, there's a movie in for him to watch...why does he need to transfer for the next 2 hours? He has a power chair, and hopefully that enables him to do pressure reliefs. If not, you 2 need to work on that first.

    Cath him. Stick a movie in, and a pile of towels on the couch. Go take a nap!

    Can you tell us what it is you're afraid will happen in 2 hours time, if he's left alone? I honestly don't get it.

    I bet he'd be happy to be alone, or maybe that's just me. I was delighted to finally get some solitude after months of ppl in my biz every moment.

    Classic Rhino story, loved it. I bet you were cussing. Funny how single-minded you get. "Oh, I WILL get you and play you, you little ^%$#!" And then you're exhausted LOL, and sleep through the movie!

    And every time you get a little bit stronger...

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