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    #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.

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      #17
      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

      Comment


        #18
        Originally posted by SCI-Nurse
        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.

        Comment


          #19
          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.

          Comment


            #20
            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; 8 Jun 2009, 1:18 AM.

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              #21
              As a former foster child, im grateful for the people I have met and things I have seen. I would much have prefered my siblings and parents, but life sometimes is mean. You might join the care givers forum, and womens only. this is a great place to get a little free therapy. just start reading. you will see that their is life after sci. it is an amazingly huge tragedy you and your family have suffered. reading others stories though, and how they getting by now, is what taught me to find a way to to get by. I do hope that you are feeling better about things n. I know it is a lot to ask of you at this point, that you try as hard as you can to see around the poo and the limitations, and know that you are not alone. I hope that you can find what you need to catch your breath, and heal enough to move on. if your husband were to join too, you would still be able to unload your troubles without worrying about him having to see, due to the caregiver and women only forums. welcome to care cure by the way, sorry and glad to meet you. the sci nurse,Kld, and Dr young are .....I dont even have words enough to explaing their value. the rest of us are getting by, some better than others. I guaruntee someone here has been in your shoes, and and also your husbands and your children. on the mention of youngsters, there are some young newly injured here too. we could take lessons on coping from them. please try very hard to hang in there. you can find a lot of answeres at carecure community.

              Comment


                #22
                newbee,
                I feel your pain. I could have written your post. I feel so trapped in my life. My kids are the only thing that keeps me going. I have learned that I cannot care for both my husband and my little kids, it is just not possible. We have absolutely no family support. It is just us. My husband tells me all the time that I am not strong enough. I need to learn how to take care of him by myself. I have recently hired a CNA against his wishes to come every day for 2 hours. I still feel totally overwhelmed. Each night I spend over an hour putting the kids down to bed, then an hour putting the husband down, he then whines to me about wanting me to hang out with him. I am exhausted and so done with him. All I want to do is get away and have some time alone to dream about running away. Unfortunately I could never leave. It would be so cruel. You are lucky that your husband is a para. It could be worse. My husband is totally dependent on me for everything, as far as I can see I will never have a life again.

                Comment


                  #23
                  Originally posted by newbee View Post
                  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.
                  Newbie I would caution you to be careful seeking out the people that will heap "compassion " on you and pushing aside the more logical and realistic attempts to help from folks like the SCI NURSES. It has been my experience that their responses are more often very helpful rather than hurtful.

                  I do understand you are very much in pain, scared, and pissed off. I have read all of the posts in this thread and I also hope that you find the counseling that will help you through this. It not easy for you I am sure. But coming from the other side it's not easy for him either and if you love him he needs you now more than ever. I'm sure you probably already know that.

                  I hope you find the answers you are looking for. The best one I have seen yet here is that it does get better for you and for him and ultimately the kids. Life will be forever different than it was going to be but it does not have to be awful. I hope you can both get there.

                  I am a believer and I hope you have a faith in God to help you through this. I can't imagine trying to do it without a faith in something bigger than myself.
                  L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

                  Comment


                    #24
                    Originally posted by newbee View Post
                    Your response lacked empathy, understanding and compassion. I dont need your "tough love" approach. I am already tough enough on myself.
                    KLD,

                    We all appreciate your being here to dispense your knowledge of SCI-related problems, but here is a woman who is telling you the same thing I told you (without the sardonic joke). I used to wonder if it was only me who read your posts and felt they lacked empathy and compassion, but after feedback I received and this poster's response, I don't think it's me.

                    If anything raises my ire, it's people who would assess my situation and try to convince me that I was to blame for not just sucking it up and moving on. I found myself wishing ill on these people and when tragedy did strike them closer to home, I was even more irritated that they had more empthy and compassion towards their own misfortune and less excuses for the terrible hand they were dealt. But in the end, I never waivered my compassion towards them in their sorrow or offered them the same pathetic platitudes they gave me; I understood their grief and let them know that there's at least one person who believes their feelings are justified, that life can be a cruel bitch, and there's not always a silver lining in the clouds.

                    Comment


                      #25
                      Hi newbie ...... I'm so sorry you're having such a tough time ... I think most of us who are the spouse of someone sci can relate to a greater or lesser degree to your feelings . Bill has been injured over 10 years now and his injury is similar to your husbands ..... we have had experiences almost exactly like yours where all he he wanted to do was pack up and go home (or not go at all) .. until finally one day he just seemed to reach a turning point. I don't know if it was resignation to our situation, acceptance, denial .. all I know is he finally got to the point where he just decided it was time to get on with life. Everyone is different ... it takes longer for some ... and sadly some never get there! But ultimately it's up to him .... all you can really do is carry on with the rest of your life ... if for no other reason but for your kids.

                      Reading back through some of your posts its clear his bowel program is at the root of most of his issues. Are you working with a good doc and pt to get this thing under control? Bill used to spend hours doing his program almost daily and still had occasional accidents until finally he had an emergency ileostomy during the course of a belly surgery gone bad ... he could have had it reversed but once experiencing the ease of life having it .. he chose not to ..... not for everyone but just our experience. In the mean time all you can control is how you respond to the situation ... not him .... I know you know that .... easier said than done when you're already emotionally fragile. I see you are getting help for that ... have you talked about or considered medication (for yourself) your serotonin levels are probably in the toilet and you may just need to get them back up again so you can better handle all the stuff life is throwing at you. Being on this side of the fence and dealing with the guilt factor is huge .. huge ... and its really important you don't let it overwhelm you. Coming here to vent is one way of managing it .... burn out is a very real problem .. emotional and physical .....

                      Longing for the life you lost is natural .. even after 10+ years I still have those feelings ... but eventually over time they loose some of their power and become less intense. Things that seem impossible now become a little more "normal" and yes even comical (our poor kitty took the blame for more than one bowel accident and our pound puppy has been dubbed the fart king (not ) .... they gets extra treats for services rendered .. learning to laugh is imperative ....

                      I wish I could be more helpful .. I wish I had some magic .... for us all ... but in the mean time take heart knowing there are many of us who understand exactly what you are feeling .. it took great courage to share that and is a good first step in helping you recover .... take care ... stay strong ... we're here ...

                      Obieone
                      Don't let the nay sayers get you down newbie ... if anyone gets out of line I'm here to take care of that .... this is our sanctuary ... and I intend to preserve that! And if you prefer don't forget the more private Caregivers forum in the members area.
                      Last edited by Obieone; 8 Jun 2009, 7:53 AM.
                      ~ Be the change you wish to see in the world ~ Mahatma Gandi


                      " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
                      Jane Siberry

                      Comment


                        #26
                        Newbee, If you and hubbie learn to laugh at some of the things that happens to sci's when planning events maybe it wil cut into the hopelessness. We all know this is serious business, just take 1 day at a time and keep your up head up sista.

                        I hope this helps take care.
                        coolbreeze c6/7

                        Keep on moving don't stop!

                        Comment


                          #27
                          thanks for emailing me newbee .... and glittersprinkles, if you are in a similar situation, which it sounds like you are, please PM me.

                          To all those who answered with tough love, particularly KLD, trust me, the last thing a stressed out caregiver needs is tough love. Our jobs are tough enough. Sometimes we just need the love part without the tough part.

                          Please, please, have some sympathy and don't talk about things like throwing her kids in foster care, how much her feelings hurt her husband and to leave him if she doesn't love him. HELLO, none of this is helpful. By posting here, she is at the end of her rope and if she didn't love her, she wouldn't be here.

                          I could go on all day, but I'll stop. Just so that any caregivers who read here know, there are MANY of us who get it and if you need support, please PM me.
                          Wife of Chad (C4/5 since 1988), mom of a great teenager

                          Comment


                            #28
                            newbie i have been where you are it has been almost 11yrs since his injury he is incomplete spinal injury he is a quad . we have three children together. i had to many melt downs so much stress and i took care of him by myself for a long time till he got attendants and i still do a lot it does get better somedays are better some are worse it comes down to a choice you have to make there have been many of times i asked myself why i stay the answer for me is because its who i am i have learned to have a life seperate from him i take the time for me now the stress is still there but not to be mean or any thing but there was a time when he tried to put me in that chair with him i let him i didnt have a life i did everything for him i didnt go any where or do any thing only what he needed but i learned life is not all about him i matter too its hard believe me but you are the only one who has to decide what to do for you

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                              #29
                              Thanks everyone for your responses. I am doing better today. The grandparents took care of the kids and my husband and I had a talk.
                              I love my family and would never do anything to hurt them. I was affraid of the thoughts I had and didnt have anywhere else to turn. I appreciate all the insite and understanding I have recieved.
                              In reply to some of the responses. My husband wasnt very out going or had much of a sense of humor. I dont know how he would be able to be lite hearted now about things.
                              I have asked him several times to join cc because of how much comfort it has brought me but he is not interested.
                              About me living life. Every time I do something with out him he windes up crying to me about how abandoned he feels when I leave him.
                              He is a good man. I dont see myself ever leaving him. At this point I dont want to. I dont think the grass is greener on the other side and I love him very much.
                              I am sorry for you who are going through similar situations. I wish I could help, I appreciate that you are here for me. It has helped me make it through the day.
                              I will make an appointment with the shrink when I get home. He is very helpful and I think he would offer some good solutions or thoughts.
                              God bless!

                              Comment


                                #30
                                Originally posted by exhale45 View Post
                                newbie i have been where you are it has been almost 11yrs since his injury he is incomplete spinal injury he is a quad . we have three children together. i had to many melt downs so much stress and i took care of him by myself for a long time till he got attendants and i still do a lot it does get better somedays are better some are worse it comes down to a choice you have to make there have been many of times i asked myself why i stay the answer for me is because its who i am i have learned to have a life seperate from him i take the time for me now the stress is still there but not to be mean or any thing but there was a time when he tried to put me in that chair with him i let him i didnt have a life i did everything for him i didnt go any where or do any thing only what he needed but i learned life is not all about him i matter too its hard believe me but you are the only one who has to decide what to do for you
                                Hang in there exhale45 you sound like a great woman that is really trying. You are right. He did not or should have put that much on you. I could never be that selfish to require that of anyone. I salute you and all you fine spouses.
                                newbee any man should be so lucky as to have someone like you. Hang in there.

                                Dave
                                Last edited by reedyd; 8 Jun 2009, 2:04 PM.

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