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Thread: advice for me and my caregiver wife

  1. #11

    wife or care taker

    sound like you have a devoted wife for right now. do everything you can to let her have a life outside of your impairment or the day may come when see will no longer be anything more than your care taker instead of your wife and partner.

  2. #12
    Hi, MadMSW - Had to read your profile to see what your 'handle'meant! Welcome aboard! Are you doing any of your graduate work in SCI family issues?

    _____________
    Tough times don't last - tough people do.

  3. #13
    Senior Member TD's Avatar
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    My wife has gone

    to a resort for a weekend to get away from me. It does not have to be a resort but maybe a local hotel or B & B would suffice. Any place that she can spend time on herself and not have to worry about you.

    Are you sure about the state not being interested in your independence? You have contacted the Independent Living agency directly? They may be hesitant to modify your house because it is so old.

    In Arizona they did not seem interested in how much my wife made or how much we saved, only how independent I could be with the modifications. It may be different in Maryland. I would ask for a reason (get it in writing) why they are rejecting your request for independent living modifications. This puts them on the spot and gives you ammunition when you appeal the denial for assistance. If you cannot tell I am pretty stubborn when it comes to getting help from my government after years of supporting their needs with my tax dollars. They may balk at their duties but will eventually come around when you make enough noise about it. Noise translates into contacting local news agencies about your plight. A lot of TV stations love this sort of story!

    Roll-in shower - Transferring to a shower bench from a wheelchair can be dangerous...especially if you are alone. I have a commode chair that fits over the toilet (for bowel routine) that doubles as a shower chair. I took the shower stall out, tiled the entire bathroom floor and walls, lowered the drain so the water runs into it and not into my bedroom, and added a shower curtain that allows half the bathroom to be my shower stall. Admittedly, my bathroom is only 10'x6' so the shower is 5'x6'. I get help getting out of my clothes, cath, then roll into the shower. When I am done showering (my wife helps to wash my back and butt, makes for an "interesting" bath time ) my wife lotions me down then uses a squeegee to clean up the walls and floor. The whole process takes me less than two hours and most of it is done alone.

    "And so it begins."

    [This message was edited by TD on February 11, 2002 at 05:02 PM.]

  4. #14
    Ron, your post is inappropriate. Please cease posting these kinds of messages. Wise.

  5. #15
    Ron, your message has been deleted from this topic because of inappropriate content.

    _____________
    Tough times don't last - tough people do.

  6. #16
    Senior Member martha's Avatar
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    Fantastic!

    Marmalady -- didn't realize you could do that. GOOD JOB!

    martha

  7. #17
    Super Moderator Sue Pendleton's Avatar
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    Hi TD, Have you tried finding a long handled bath brush to do your own back and butt? I think I got mine from:

    http://www.sammonspreston.com

    It's plastic and the curved end fits right on the grab bar near where my shower bench is. Those foam ended things rehabs give you are useless. Can't get the soap to foam and they don't really clean just smear soap around. They also mildew quickly. I think mine was arounf $15.00 but now I only need help with lower legs and feet and I'm a C5-7 incomplete and use a shower bench right now. Next time I'm getting a shower chair (eaiser for me to transfer to).

  8. #18
    Hi, Martha,

    Blush-blush! I also inadvertently deleted the entire post re 'weaning from my son's care'. I want to apologize to the starter of the thread, and any of the posters who had valid responses to the questions asked. I'm thinking of changing my name to 'computer dummy'!!!

    Martha, could you email me with your email address? I've got a question for you. Thanks!

    _____________
    Tough times don't last - tough people do.

  9. #19
    Senior Member TD's Avatar
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    Sue Pendelton

    I have one but it is useless because I cannot wash myself effectively with it. There is probably a 4 to 6 square inch area on my back that I cannot reach and that curved sponge dohinky is too flimsy to wash the area effectively. I am sure there is SOMETHING out there that has an effective head on it but I like sharing my shower with my wife. Then there is the area on my hips that I cannot get at without risking sliding off the chair because it is so slippery from the soap.

    As my wife puts it, "We don't have sex anymore we do therapy". Due to several conditions I have to deal with, i.e., Hyperesthesia, Central Pain, AD, etc., SHEhas decided that she would not like to risk killing me. This does not mean we are not intimate it just means that "crackers" is not crisp any longer.

    Oops!! Maybe I should be discussing this on the other forum.....

    "And so it begins."

  10. #20
    Junior Member
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    22 and a wife and caregivber to a quadriplegic

    My name is Fara and i am a wife and a full time caregiver to a quadriplegic.
    My husband has been injured for three years, he broke C5/C6 complete. I am a very lucky girl considering that my husband is in a manual chair and can cath, dress and do his own bowel program with the miracle enema THERAVAC. But lately i have felt my will grow tire and i find myself thinking about being and wanting to be someone else. I have tried all I can to be happy but i am not sure what else to do. I have asked hime to make my time special with him. YOu know, if he could take me out or surprise me with a planned out evening or a date, but he always is telling me about how hard it is for him to plan a night with our busy lives. We are both full time students. I just feel that in order for a quadriplegic male to keep his wife, he needs to reassure her that he is better for her than any able bodied person out there. He needs to do things differently than when he was able bodied. He needs to keep her wanting to stay with proving to her that he is doing what he can to make up for what he cant do, like buy her roses, write her poems, plan a surprise weekend, no matter how corny or childish, just to .. . I dont know I guess i am always asking for too much. But i really want this marriage to work, and at 22 I have no sex life, i live in miami but i cant go to the beach without feeling so guilty about not taking him wife me, its a little hard to push him around in the sand you know. I am a child but a wife, i married my husband after his injury, although we were dating when the injury happened. Lately all the bowel accidents and UTI have subsided and I thought i would be happy and content with all that i have and allthat my husband is able to accomplish as a quad. BUt i am miserable all the time, and i was wandering if there were any caregiver wives out ther that would just tell me what i can do to be happy. What can i do to stop feeling guilty about doing things that able bodied people do. How do i tell myself that just because my husband cant feel me i should still want to have sex with him? When i got married it was two years into the injury and i thought if i had love him thus far it must be true love, and I could not leave him because if it were me i would just die to be alone in his position. I was happy keeping myself reminded at what a wonderful thing i was doing and how much he loves me because of it all. But now i find myself feeling hopeless. Regardless of HOw nobel and rightous i am being the bottom line is my animal instincts desires a man who can feel me, and at the end of the night, after all is done in the day, my husbands ass hurts so much he has to sleep on his front. How do I learn to live with my new situation happily, i mean. I can put up a front, i can pretend and i can convince myself that all that matters is that he is alive and that i am in love. But every waking moment is painful, and every time we talk, and me and my husband communicate well, i feel that there is nothing to solve physically and all that i have mentally is not enough to keep my happy. I am hoping that he will be more romantic, maybe i hope that that would make a differnce. For example, on valentines day, i think that considering the fact that so much is taken away from us with SCI that days like this should be use to our advantage to remind us of how important the little things are. But my husband feels that cards, presents and things of this nature is meaningless. Well it is exactly little things like this that would keep me excited. But when valentines day comes along, i find myself dreading it, remembering just how, sex all night long would have made a great valentines day and now there is no card to open and we dont have sex either. Infact i found myself waiting in line at tony Romas, taking away dinner to have that night. I would have loved to come home to a house full of candles and a dinner. Maybe my sex drive would return if i felt that romance was still a part of our marriage. Am I asking for too much, or am i concentrating on stupid things that shouldnt matter. But maybe for other quadriplegics out there, try planning a weekend where your spouse does not have to do any thinking but follow you around. Have a dinner planned and a movie, i feel that if you are physically disable, that use your mind, thinking can be tiring. Do the thinking and the worrying for her. For example, just haveing my husband decide what to have for dinner, evn if i haveto cook it, takes the stress off thinking about what to make. Or having my husband fill the car with gas at a full service station, rather then waiting for me to ge in the car to an empty tank, is rewarding, and it means alot that he decided to do what he can do with the help of other instead of only mine. I have no problem with the bowel program or any of that because it just made us closer and poop and pee is nothing more than what you ate and drink. But i dont really know where iam going, But my effort towards this letter was to meet people in my situation, and i am hoping that i will her from someone soon. Please email me, just to talk fara9@hotmail.com

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