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Thread: wondering if I would be better off dead

  1. #11
    As the others have suggested get some counseling so you can make good decisions. Get some respite with time away. Your husbands level of injury would leave him able to be independent. Lastly, file an ADA complaint against the facility so this won't happen to others.

  2. #12
    What is your husband's sentiment about this? Does he want to live?


  3. #13
    Just read from another thread of yours that you & your husband already do counseling. Its been mentioned that he doesn't want to do anything anymore or have any fun. It's about time that he either accepts SCI & moves on or you are going to have to move on without him. You can't have him bringing you down like this & your children.
    Last edited by gurly2356; 06-07-2009 at 10:15 PM. Reason: reread another thread from poster
    Life is like a box of chocolates, you never know what you're gonna get.

  4. #14
    Senior Member zillazangel's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    .....We got it cleaned up (lots of towels!) slept in late the next morning, and went ahead with the rest of our trip and plans. We certainly did not return home (kind of hard when you are in the middle of the Pacific, or have to fly home in 4 days). I don't understand why you had to go home early?
    I have thrown in the towel and left somewhere in complete frustration because it just became a clusterf*ck and I couldn't take it. Newbee - check your PMs, email me, please.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  5. #15
    Senior Member flicka's Avatar
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    Quote Originally Posted by rdf View Post
    At T4, your husband can do anything he wants.
    Absolutely the truth. As time goes by, shit will happen but he'll shoo you & the kids away and take care of it himself!

    If you love one him still, know that he can get independent if he wants to. If he isn't around other spinal cord injured people, he needs to be. Even getting him to be a part of an online community like this will help him realize what is possible and how to take care of problems he faces.
    ____________________

    "We are the ones we've been waiting for. We are the change that we seek."
    - Barack Obama

  6. #16
    it is difficult to paint the whole picture of our situation. i know there are many suffering out there as we are. i know we are fortunate in many ways. i think we have done an ok job with the situation we have been delt.
    i already feel bad and weak for not being to handel the situation better.
    we left the cabin because my husband refused to stay, me and the kids were very dissappointed. this trip had been planned for months and it was our first family get away. we are trying to make the best of our situation but some times it feels like everything is against you.
    i didnt tell my husband the thoughts i had. i dont want to hurt him or make anything in his life more difficult.
    I dont feel like he understands how terrible it is to be on my side of the situation. watching someone you love in pain is horrible. i am not saying his pain isnt horrible but i think that caregivers are lost in all of this. we have feelings too and we hurt when the one we love is hurting.
    those of you who offered me kindness and understanding when i need it, thank you, i appreciate it.
    some are stonger than others. i am feeling very weak and run down right now but think for the most part i do ok.
    i didnt write today to hear how others are doing it than i am. i am just feeling desperate and had no where else to turn.

  7. #17
    Senior Member zillazangel's Avatar
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    Newbee... Please email me. I hear and feel your pain jumping off the screen.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  8. #18
    Quote Originally Posted by SCI-Nurse View Post
    You might imagine that you would be better off dead, but I am sure that is not true for your husband and kids. Your husband would undoubtably end up in a nursing home, and your kids likely in foster care. Is that what you want?

    Unfortunately, these things do happen. Chalk it up to experience. Next time, you will ask better questions about the true accessibility of the cabin (many here could have told you that before you made your reservations). If you can't get into the bathroom, you put towels on the bed and floor, transfer to the bed, clean up, and clean up the floor. I can tell you about the cruises when I have done this for my mother in the middle of the night, with no one to help, or when it happened in my sister's living room or mine. We got it cleaned up (lots of towels!) slept in late the next morning, and went ahead with the rest of our trip and plans. We certainly did not return home (kind of hard when you are in the middle of the Pacific, or have to fly home in 4 days). I don't understand why you had to go home early?

    If he is ready to travel, he is ready to do his own bowel care, or hire an attendant to do this for him (instead of paying for a cabin) or take an attendant with you if you can afford that.

    Can you imagine how your reaction made him feel about his SCI and what he is putting you through?

    I would also second both you going for individual counseling and couples or family counseling as well. Burn out is real...it can be the death of your marriage and damage your kids. You have to take this on with determination to make changes in your situation, and you need an outside voice to help you make some decisions.

    (KLD)
    Just wanted to let you know your response was very hurtful. I am not sure if this was your intent or not. I asked many questions when I booked our reservation. I had them measure doorways etc. but still untill you are in the situation and give it a try to see what will work and what wont, you dont know. Seems to me that AB people are making decisions on what is accessible and what is not and they dont have a clue.
    And where you said you "certianly did not return home", that was certianly not my choice, it was his.
    I am very insulted that you would imply that I want him in a care center or my kids in foster care. I live my life for my family in everything I do. They are what life is all about for me and it is difficult to see them hurting.
    Your response lacked empathy, understanding and compassion. I dont need your "tough love" approach. I am already tough enough on myself.

  9. #19
    Senior Member taj2002's Avatar
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    Newbee,

    There are plenty of us that know exactly what you mean. I think as a caregiver your pain and suffering feels invisible and actually is invisible to the world. With our husbands, their pain and suffering is outwardly very obvious to everyone. The perception is that anything that is wrong with a caregiver couldn’t possibly be even one iota like anything our spouses are facing. But in reality, we face some very tough things every day too.

    I applaud you for giving your vacation a try. My husband as been injured for nearly 7 years and we haven’t even attempted any sort of vacation. Partly he is afraid to be away from home due to his condition and partly because it would be so difficult for me to care for both him and our kids away from the familiarity of our house. His caregiving needs are so great. I can handle the kids or him solo, but it’s when you have the responsibility for both away from home that makes it extremely difficult.

    I do understand why you went home early. Maybe a cruise with a grown nurse daughter caring for her elderly mother doesn’t equate to a wife attempting a trip with her SCI husband and kids. Please know that there are many of us knowing and understanding your pain, frustration, and love for your husband and family.

  10. #20
    Quote Originally Posted by rdf View Post
    Words of wisdom ag.

    Newbee, I know it's cliche, but it gets better with time. Your husband is only a year and a half injured, and the first couple three years are the toughest. It gets easier after that - for him, for you and for the family. Seek out others in your area who have spinal cord injured people in their family. Keep it together, it'll come around, it takes a little more time until you can see some light, some good light. Because there is good light to be found, a future for your family post-SCI. At T4, your husband can do anything he wants. It just takes a little time for the whole situation to sink in, and crapping your pants can bring low the strongest of men. It's a lot to take in and a lot to live with the first couple of years, but you all will overcome.

    Best to you and your family.
    He speaks the truth. Things do get much better. However,if you don't love him then leave.
    Last edited by Handsome Wheeler; 06-08-2009 at 01:18 AM.

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