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Thread: Caregiving to my c5 c6 husband

  1. #101
    Quote Originally Posted by jenniferh View Post
    I don't think we're going to make it. He has become so bitter, so mean. I had a killer headache yesterday and he yelled at me that I will never have it as bad as he does. I told him that I saw a guy we know that is a quad amputee and he told me that he was better off than him, my husband. I said he has no arms, no legs, how can you say that? He has become just mean. I feel like a slave, that I don't matter anymore and I'm just so tired. I never thought it would be like this.
    As the old saying goes "I complained I had no shoes until I saw a man who had no feet." As a C6 I'd suggest not going there. If I were buried neck deep in shit I'm not going to feel any better knowing the guy next to me is 4" shorter and chin deep in it. Just tell him you can understand the anger but he's lashing out at the wrong person.

    When I was discharged from the hospital I had similar abilities - or lack thereof - as your husband. I used the cuffs to eat, brush teeth, hair, etc. I couldn't even write my name. I also had a caregiver coming in every morning to help with transfers, shower, bathroom, dressing and meals. On the chair I used grade aids, wheelie bars and the chest strap. But I always refused an electric chair and have never used a sling to xfer.

    Anyway, to make a long story short I haven't regained movement, I'm still a standard C6 SCI, no trunk, no fingers, trace tri's. But now I have my own home and live alone 24/7. The cuffs, the grade aids, wheelie bars and the chest strap are all long gone. And so is the caregiver. I've struggled, fought, and learned and now I'm 100% independent. I do my own xfers, bathroom, shower, and dressing. I make the bed and can tear it down to the mattress and put on clean sheets etc. I cook in the microwave, on the stovetop, in the oven and just got a gas grill. I do my own laundry, run the vacuum and load/unload the dishwasher. And when I had to I even mowed my lawn (eh, weeds). And I do it without out the use of my fingers (actually I 'use' them, I just have no movement and can't grip). NONE of it came easy and too much of it in one day will wear me out.

    I write this to let you know you're taking on WAY too much (ty Capt. Obvious). And to let you know that he's not delicate, and he's not brittle. You can leave him alone - which is probably exactly what he needs. After all, necessity is the mother of invention. He can't figure out how to do something if you're there to yell at to do or get it for him. In an emergency he can dial 911. Monkeys and dogs have dialed 911, it ain't that tough. YOU need time to get away to do whatever. If you're afraid to leave him alone then why not just ask one of his friends to come over to watch a ball game or a movie with him? And then you leave. Don't worry, don't fret, just go somewhere to relax and recoup. He'll be with an adult he trusts and you won't need to worry. But please do something to take care of yourself before your head explodes.

  2. #102
    Senior Member
    Join Date
    Sep 2007
    Location
    Fithian, IL
    Posts
    1,967
    Very well said Tumbleweed

  3. #103
    FYI...just went Alan's CaringBridge website page, and Jennifer has posted that today was a much better day...

    Take care all!

    Teena

  4. #104
    Well I think yesterday was a fluke because he is worse than ever today. He said he wishes someone would shoot him, he has nothing to live for. I told him about a lot of the advice on here and he keeps saying, he's 50 so basically he'll never get better. Our pastor is coming over here shortly and hopefully we can work things out because right now I just want out. I'm so angry that he doesn't even want to get better, he has an excuse for everything.

    The other thing is...I get it. I get that he feels trapped in his own body..he's lost everything he feels he had to live for and that absolutely breaks my heart.

    I just want our life back...

  5. #105
    I'm almost 50, C5-6 incomplete w/ Graves disease.

    I wonder if he wants to compare ailments? We can see who has it worse...and if I win, I lose!

    He sounds depressed. He's being unkind. He needs a reality check.

    You don't get your life back. None of us did. We learned to live the one we have. We have ALL (the SCI's of CC) been trapped in our bodies, does he not get that??

    It's called playing the cards you're dealt. First, you look at the cards and think "That hand stinks." Then you only have a few options. You can fold, and cry and berate the other players, until you're left alone w/ your stinky cards.

    You can get mad at the dealer. Fat lot of good THAT will do.

    Or you can play the damned hand you were dealt. You can be mad about it, or mad at it, but if you don't pick up those cards and play them, you don't even deserve to be in the game. Is that harsh? He has to pick up those cards and try to make the most of them. YOU can't pick them up for him. If you baby him, you are standing between him and the cards, which is heinous. If he needs help picking up his cards, let him figure out how that is done.

    At the Great Casino of Life, the pretty waitresses don't stand there w/ drinks all day. We summon them, we pay them. In your husband's Casino, he may need them to help empty his bladder and bowels. That's asking a lot of a casino waitress! The casino waitress might want something in return...kindness. Help with the kids. Towel folding. Taking responsibility.

    Have you left him alone yet? If not, I pity him for that. Gawdamighty I hate people in my space all the time. I mean I LOATHE it!

    Let this man play his cards.

    I love the story of the man in the hoyer lift, dangling. THAT is a reality check!

  6. #106
    You are right Jen, I believe too he feels trapped in his own body and thinks he is worthless, useless. I also believe he he has so much love for you and the kids but is afraid to show it now because he doesn't know how, he doesn't even feel like a person. It's so very hard to explain. Tumbleweeds put it very well, necessity is the mother of invention. Just leave him be for a while and he will figure things out. You need to get ahold of yourself as well.
    From the time you were born till you ride in a hearse, there is nothing so bad that it couldn't be worse!

    All fringe benifits must be authorized by Helen Waite, if you want your SCI fixed go to Helen Waite!

    Why be politically correct when you can be right!

  7. #107
    ***update***

    Please go to the caringpage link to see what is happening to Alan and Jen now...and please send good thoughts and prayers...

    http://www.caringbridge.org/visit/alanhenley

    He has been taken ill with what may be a possible stroke, or possible allergic reaction to new meds...

    Thanks in advance for the thoughts/prayers...

  8. #108
    OMG, how dreadful. Firmly hoping for the best...my cousin today told me they thought she'd had one, but when the drugs cleared her system she was ok. So don't give up! You 2 are such an adorable couple, ppl care, and the fat lady has not yet sung.

  9. #109
    There is yet another update on the CaringBridge site...prayers still much needed!

  10. #110
    A new update on the CaringBridge site, hopefully things are turning for the better!
    From the time you were born till you ride in a hearse, there is nothing so bad that it couldn't be worse!

    All fringe benifits must be authorized by Helen Waite, if you want your SCI fixed go to Helen Waite!

    Why be politically correct when you can be right!

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