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Thread: One of my moods again!

  1. #1
    Junior Member
    Join Date
    Jul 2001
    New Castle pa usa

    One of my moods again!

    MY husband had surgery on both of his feet May 16 and he was doing good which I was surprised at how easy it was for the first week .Now he's getting on my nerve's . He wake's me up at least twice a nite . I get so pissed off with that. I realize for him it's important to have the cover's pulled down cause he is having one of his sweat attacks and that he needs anouther sleeping pill because the first one didn't work but jeez every night it's something he can hardly do any thing for him self he has no control of his hands all I can say is there's gotta be better days ahead Thank god for Attendants

  2. #2
    Senior Member Clipper's Avatar
    Join Date
    Aug 2001
    Portland, Oregon
    I just went back to read all of your posts to better understand your situation. I'm on the other side -- a C5/6 complete, for almost 13 years -- so I can't speak from your perspective. I can tell you, though, that there is not a worse feeling in the world than looking into someone's eyes and feeling as though I am a burden because I ask for a lot of things or because I wake someone up five times a night. Words aren't even needed. A look, body language says it all.

    It's good that you have caregivers to relieve you of this role. But, unfortunately, your husband will always need your help as long as he has an SCI. Some nights will be worse than others. Try to remember that he probably hates waking up multiple times each night just as much as you do. I have found that I need to be patient with people if I expect them to be patient with me. This includes family members.

    Hang in there. Be patient. Good luck to you and your husband.

  3. #3
    Senior Member shacha's Avatar
    Join Date
    Feb 2002
    bonita springs, fl


    hay lady, its ok you can have feelings, butmaybe you need a break take a couple of days and go to your moms or sisters or best friends somewere you can focus on you for just 48 hours. hell get hotel room and take a long bubble bath, go window shopping you ge the picture. you have attendents so that shouldnt be a big deal (ha), anyway hang in there if you ned to e-mail me we are the same age going through the same thing.

  4. #4
    Hi, Xhale,

    Everyone of us who's a caregiver has been where you are; and probably everyone who has been on the other side, like Clipper said, has had feelings, too. Living with a family member with SCI, I think, forces us to ramp up our problem solving abilities and creative thinking.

    My son is a C4-5 complete; when he first came home from rehab, he needed turning every two hours at night, and night meds along with that; also the bouts of dysreflexia between the two hour turning sessions. I got no sleep, and was dead on my feet the next day, and for a year and a half was a zombie. We've gradually come up with solutions to the blankets, and turning, and meds, tho.

    You can get a 'loop' made out of roping, or cloth, whatever you can find (fabric stores are gold mines - all that double-sided velcro!) and attach it to the edge of the covers. Make it big enough that hubbie can slip his whole hand through, and learn to get rid of the covers himself.

    We got a 7 day a week pill box, with four compartments for morning, afternoon, evening and night; we refill his pills once a week. At night, the pill box for that day goes on his chest, and he's able to get the box up to his mouth, open it take his own pills.

    The turning issue was solved when Matt could sleep on his stomach, with all pressure points supported (at first, he got dysreflexic whenever he was placed on his stomach - not from not being supported, but just his body saying, whoa, what's this?); he sleeps on his stomach all night, and doesn't need turned.

    I'm not saying these may be the right solutions for you guys, but just suggest them as examples of 'thinking outside the box'. For every problem you encounter, there is a solution; you just have to think of it!

    You say he can't use his hands at all; did he have hand sessions in OT, to learn to use the 'tenodesis' to help grasp things? If not, try to arrange some 'refresher' OT if you can - did I remember you saying he'll be going to rehab for his foot surgery? Perhaps you can time some OT along with that.

    SCI is so frustrating for us all; our family members as well as ourselves. It requires a huge amount of teamwork and sensitivity on the part of all involved. And a good dose of humor doesn't hurt a bit, either!

    Clipper, thanks for the sensitive post; I've seen that look in my son's eyes when he's asked me for something, or needed me and knows I've been in the middle of something else. He doesn't want to burden me, and the last thing I need to do is make him feel more rotten than he already does, for having to ask for the help. On the other hand, there've been times when we've pushed him to go ahead and try to do things for himself, to see what he can accomplish, even if it means trying and trying and trying.

    Tough times don't last - tough people do.

  5. #5
    Senior Member TD's Avatar
    Join Date
    Aug 2001
    Phoenix, AZ, USA

    Frustration was my biggest enemy

    and I am only a para. I hate needing to wake my spouse up and have weighed my decision to wake her against what the alternative would be. Try keeping the sleeping aids close by or, better yet, in a cup that he can handle where he can reach it. It is bad enough when an accident occurs and you HAVE to get up because the alternative is unthinkable.

    You definitely need time to yourself so!! One suggestion my wife's psychologist made was to find someplace to release your frustrations. Screaming, crying, punching are all good releases but you should not do them in front of your husband or even let him know you are doing it. It will only make his anger at being a burden on you even more intense. And believe me, he feels like a burden on you whether he will admit it or not.

    Please take these other caregivers' advice and get away for a while.

    "And so it begins."

  6. #6
    Never mind. I'm always in one of "those" moods.

    [This message was edited by mj on May 27, 2002 at 09:57 PM.]

  7. #7
    Senior Member KLD's Avatar
    Join Date
    Jul 2001

    Night help

    Needing to have help at night from family members is frequently the straw that breaks the camel's back related to a successful home discharge. Can you get attendant care at night at all? If not, then you need to spend some time talking with him about your feelings, and strategize ways to reduce his need for care at night.

    Proning all night is a good way to avoid doing turns. I have done this even with high, ventilator dependent folks. Another alternative (but expensive) is a turning mattress or bed.

    Does he have any arm movement, such as biceps? If so you can try what one of my clients did to take meds in the middle of the night. He had his attendant attach the pill to his night splint with double-sided sticky tape. He could then get it to his mouth and pull the pill off the splint with his teeth. It worked well for him. Similar techniques might work for pulling off the blankets.

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