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wondering if I would be better off dead

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    #31
    newbee i'm a t4 i wish i didnt survive my accident. i feel guilty for what my husband and grown sons have been through with me. i feel for you and him . i dont know what to say other than i empathize with you.

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      #32
      Deep down I'm sure he feels just as bad about putting you in this situation as you do about being in it.I know I feel like such a burden to my husband badly.Point is spouses still hurt,their life changes just as much.Alot of it isn't really about the care,but the things that you can no longer do as a family or couple.I see the hurt in my husbands eyes over that quite often.Sometimes he loses his cool,but we now talk and he collects himself.The thing we try to do most now is just laugh about the bad situations.I agree,the tough love crap in this thread is quite overboard.KLD,I love you for your helpfulness here,but your post was especially harsh.Reeyed, him being a para vs. quad-haven't we learned yet that "we all" hurt and are affected by this crap?Yes,The average AB doesn't know what we go through,but one that is directly affected such as a spouse does get the idea(imo).I respect and feel you're entitled to your o,but I just have to disagree because I see first hand how my family hurts just as badly,just differently I guess.I really do ache for you and your family newbie and hope you can get the strength and possibly counseling to move forward.Of course by no means do I want anyone to be miserable in a relationship,but if in your mind you know he woulddo it for you then please try your damnest to do it for him.Good luck..please stay in touch w/ Ami or other caregivers.

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        #33
        newbee,

        I had asked about your husband's perception on living life in his present condition and if he has thoughts to end his life as well. As a caregiver, if you're listening to him (understandably) damning his own life and wishing he were dead himself, then that can only bring you to the same lows and possibly same thoughts.

        At least you found an outlet with us here. I'm not a caregiver, but I can still listen and offer undying compassion.

        Comment


          #34
          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)
          I read this as a very supportive AND empathetic post. This doesn't appear as a "tough love" approach as it is just PRACTICAL and offering some realistic advice and manageable solutions which could be attempted to deal with the problems expressed.

          Newbee: It can be extremely difficult to look beyond or outside whatever one may be feeling consumed by in the moment, and also then not see the unintended effects this has on others around them, in this case children and injured spouse. It seems the stresses you are experiencing have progressed since your husband's injury 2 years ago, and worsened over time rather than lessened with rehab and your husband's own adjustment to his injury and increased independence and self care. Being that he is T-4, has he not gotten to the point where he is dong his own care and fully independent by now?

          I don't know if the only issue going on is directly associated with the physical injury, but as KLD mentioned, burn-out and other emotional stress from an sci to a family can be devastating, so I hope you do find some relief and resolution this and any other issues going on soon.

          Comment


            #35
            Originally posted by Le Type Fran├žais View Post
            newbee,

            I had asked about your husband's perception on living life in his present condition and if he has thoughts to end his life as well. As a caregiver, if you're listening to him (understandably) damning his own life and wishing he were dead himself, then that can only bring you to the same lows and possibly same thoughts.

            At least you found an outlet with us here. I'm not a caregiver, but I can still listen and offer undying compassion.

            I have to say I feel that I am the weaker one. In the moment when things are bad, he gets very down. Some days are better than others but he has a very strong faith and belief system.
            No he doesnt wish he was dead. I have asked him. He doesnt know I had these thoughts either and I dont want him to ever know. I am so greatful he is still here with us. I love him and dont want to be without him. I was just feeling very weak and disparing when I wrote.
            I dont know where he gets his stength from. I could never do what he has to do every day. I have a great admiration and respect for people in this situation. You are the heros just for taking on each day.
            Thank you for your concern, I appreciate all of your input.

            Comment


              #36
              Originally posted by duji54 View Post
              newbee i'm a t4 i wish i didnt survive my accident. i feel guilty for what my husband and grown sons have been through with me. i feel for you and him . i dont know what to say other than i empathize with you.
              I am so sad to read your response to my post. Some days are better than others and I was having a worse than average day. I am sure your husband and sons love you and wouldnt want you out of thier lives. I hope I didnt make anything worse for you!
              If they didnt want you in their lives they could walk away just as I could but that is not what I want and I am guessing they feel the same way because they are still there.

              Comment


                #37
                Originally posted by duji54 View Post
                newbee i'm a t4 i wish i didnt survive my accident. i feel guilty for what my husband and grown sons have been through with me. i feel for you and him . i dont know what to say other than i empathize with you.
                Don't know how long you've been in a chair but hang around here a while as you may learn some positive things from people here.

                Comment


                  #38
                  I am glad to hear that this was posted on a "worse than normal day".

                  A lot of the stress seems to still come from his bowel issues. He is 1 1/2 out, and should hopefully be independent in all his self care, and more. If not yet, keep the hope that it is coming. But t is still early here, things didn;t really look up for me until I passed the 3 year point. (Sorry, I know that isn;t what you wanted to hear ....)

                  I know you are trying to keep things "normal" for your kids, but it sounds like the vacation was a bit too challenging? Perhaps a different venue, a little more wheelchair friendly? Baby steps I guess.
                  T7-8 since Feb 2005

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                    #39
                    Newbie, your post made me feel the pain you must have felt when you posted. It touched me way deep inside. It was obvious that you were having and may still have these days at times. It made me realize just how much SCI does affect those who care for us. How they hurt and sadly many times no one knows other than they. My injury was when I was very young. My parents were the ones who had to deal with the pain of seeing me in that blasted chair. Taking care of me and dealing with my own depression plus other issues. The many issues that come with SCI are so many and we never got any help of any kind. This was 50 yrs ago. I have lost my parents and now my son takes care of me as I am aging. With your post you brought up to my attention how my son might feel at times. Thank you for doing that. It made me realize how blessed I am to have him in my life. Many times he has told me that he looks up to me as his hero or as an example to follow. He recalls what things were like when he was little and I was independently supporting and taking care of him and my daughter. His bringing up those things help me to keep on going with life. I appreciate that you vented here because it reminded me how he must at times feel physically and emotionally tired. It also gave me an opportunity to realize that he and I needed to talk more too. Your post helped us open another door to something we had not discussed before. We always talk about just anything. Now we can talk about something very important .. him and his feelings.

                    I realize that things must be very hard for you and your entire family. At the same time I admire you for your strength, love and loyalty to them. I hope things get easier for you all with time. I am sure they will since they got easier for me when I became independent and discovered how much I could still do in spite of my dis. There will be, as I think most of us know, times such as the one you mentioned but they can be overcome. It just takes time, patience from all involved and lots of love. I do believe that there are many resources that can help to make things a bit easier too. Counseling is an important one too. It is hard to see someone you love lose so much due to a dis like SCI. I met with the emotions and pain when the brother who I used to look up to as another father ended in a wheelchair due to a stroke. It hurts to see these wonderful men lose their independence and become dependent on others. I cried so many times when I saw my bro battling and trying to become independent. Also cried with him when he cried with frustration at his dis.

                    But I know and am certain that your husband and you will survive the hard things that may lay ahead. It is obvious. Please take into consideration what KLD has suggested. She is a very smart lady and has been there so she knows what she is talking about. As I said before, can't emphazise them enough, there are many resources out there that can help to make things easier for you and your family. Please take advantage of them. Also, if you have any questions or need to vent, we are here to help and lend you a shoulder to cry on when needed.

                    God grant you and yours the strength needed for the road ahead. If you should need to talk to someone, I am here to listen. Just send me a PM if you wish.

                    Raven
                    Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

                    A warrior is not one who always wins,
                    but one who keeps on fighting to the end ~ Unknown ~

                    Comment


                      #40
                      Originally posted by Handsome Wheeler View Post
                      Don't know how long you've been in a chair but hang around here a while as you may learn some positive things from people here.
                      I hope she isn't a minority if she reads your posts. She'll read anything but positive things.

                      Comment


                        #41
                        Originally posted by newbee View Post
                        I have to say I feel that I am the weaker one. In the moment when things are bad, he gets very down. Some days are better than others but he has a very strong faith and belief system.
                        No he doesnt wish he was dead. I have asked him. He doesnt know I had these thoughts either and I dont want him to ever know. I am so greatful he is still here with us. I love him and dont want to be without him. I was just feeling very weak and disparing when I wrote.
                        I dont know where he gets his stength from. I could never do what he has to do every day. I have a great admiration and respect for people in this situation. You are the heros just for taking on each day.
                        Thank you for your concern, I appreciate all of your input.
                        Well, I think it's sometimes overlooked that the dynamics for one's marriage and family structure change even if you're not the one directly afflicted with the SCI. As someone who has an SCI and never been in a relationship, I can definitely empathize with you as the spouse of someone with an SCI. Your life changed, too. Some may scoff and say you can walk away from the marriage, but it's not always that easy, particularly with him being the father of your children. I guess I'm an old soul, but I can definitely put myself there and imagine just based on the bullshit I've endured with SCI.

                        Comment


                          #42
                          Newbie, I know how bad it has to get before you have those kind of thoughts, and I totally get what it means.

                          Not that you mean to do harm to yourself, not that you're "just" feeling sorry for yourself, but -- you get to a wall and you don't see how to keep going. The word is despair.

                          We took our kids on a vacation that we could barely afford at about the time you're talking about . . . I had found the place online and chosen it because of a couple of features that, as it turned out, were not quite as advertised. I spent most of the week being enraged at the woman who had misled me and watching my husband struggle. So angry, and so disappointed, and so frustrated. A bowel accident would have done me in.

                          I don't know . . . it might be a husband/wife thing, or maybe the presence of kids is what makes it so hard. But for us that kind of scene was the absolute worst. We did everything we could to make light of it, to keep it from happening at all, to pretend it didn't matter - but sometimes it got us anyway. Goddamn injury.

                          I guess I want to say that you should feel 100% free to say whatever you need to say here. People will hear it through whatever filters they have, and some of them will not hear it the way you mean it. That's okay. When it's just you and a broken husband and scared little kids day after day after day, what you desperately need is other adults to lean on a little. The point is not to find perfect empathy from everybody, but to have a conversation with the only people who have a chance of knowing what you're talking about.

                          It does keep you sane, in spite of everything.

                          You didn't ask for advice, so forgive me if this is not helpful, okay? What I would do in your shoes is carve out a little space in which I did not have to answer to anybody's needs. 30 minutes a day is enough, 2 hours a week would be enough, a whole night to yourself once every season is enough.

                          This thing is manageable, eventually, tho' the way to that is not always obvious until after you're there.

                          Comment


                            #43
                            Originally posted by Le Type Fran├žais View Post
                            I hope she isn't a minority if she reads your posts. She'll read anything but positive things.
                            Why wouldn't she hear positive things even if she is a minority. As long as she is not calling me a right winger for not wanting the govt to limit my insurance benefits that I work to keep yet make me pay more to provide for those who don't pay for their on insurance.
                            The woman will learn that there are several women here with SCI who have husbands and children who still love and need them even though they are paraplegics etc.

                            Comment


                              #44
                              KLD,in my opinion, posted facts. c7 quad, single mom here, no spouse, worked fulltime until last yr. if your t4 hubby cannot come to grips with it after some time (and that may be 5 or 6 yrs) and if you and he cannot work it out, then you may have to move on. i hope you have the means to do so and be prepared to be single parent or let him be such. at t4, physically he is quite capable of being primary legal parent so don't count that out. i gave birth, changed diapers, etc. at c7.

                              but i beg you not to be hasty. it is rough for quite a while. the question is, do you want to stick with it? no, your life will never be the same. neither will his. do you want to stay together or not? probably too soon to tell. but only you know.
                              Last edited by cass; 9 Jun 2009, 6:18 AM.

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                                #45
                                Originally posted by newbee View Post
                                I have asked him several times to join cc because of how much comfort it has brought me but he is not interested.
                                I wanted to take a minute to address this newbee because it is the same thing in our house ...... in the beginning I used to beg Bill to join CC but he like your husband was not interested ..... and even after 10 years is still not interested .... however CC has become an integral part of our lives and he asks me on a daily basis what the chatter is on CC or when we are "dealing" with an sci related issue he'll ask "well what does the spinewire say about that???"

                                So I guess what I'm trying to say is your husband may find his way here eventually and he may not .. it's okay you will both benefit from what you glean here any which way .... I've always had a suspicion the real reason Bill never signed in was because it meant he was actually acknowledging he was really part of the disabled community ..... and I'm afraid he's never fully come to terms with that fact ..... although lately .. I've noticed he's starting to come around ... finally .... cause there's a nascar thread somehwere around here !

                                I just wanted to let you know ..... and for the benfit of others who's spouses won't/don't participate at CC.

                                Obie
                                ~ 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

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