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  • How Do We Tell Him?

    Hi all,

    Well I just returned from the hospital and Jeremy is doing well. However none of us have said the words paralized or quadrapalegic around him. I guess we just all kinda of thought that he was aware of his condition. Well then tonight one of his friends visited and as soon as Jeremy saw him he got very excited and wanted to get up. Then he starts saying to me and my sister "Ya all got me strapped down so tight I cant f*****g move, this is b******t." My sister was trying to calm him down and telling him we are just trying to get you better and then he said "Theres something your not tellin me" She just didnt repond except to continue to try to calm him.
    What do we do? Do we tell him now or should we wait until he is a little stronger? He is doing great as far as his BP and heart rate and everything and he is just now a week post fusion surgery and is already moving his arms and twitching his fingers for the therapist. So we are just esatic but anyway........
    I dont know what to do - Im afraid that if we dont tell him he may be angry later that we didnt? But I dont know - I am going to have my sis ask to talk to a psychologist to see what he/she thinks as to when and how to tell him.
    Any advice?

  • #2
    Hes also been saying thing the past couple of days about getting the "heavy" blankets off him so he can get up and go to the bathroom, the "straps" are too tight around him and tonite he told me he wanted to get up and walk - I told him we are working on it with the doctors - I just dont know what to do????????????????????

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    • #3
      I'm sorry I'm not very equipped to advise you. All I can say is that I'd rather know my medical condition rather than not know. Has the doctor told him what happened? Does he know what has happened?
      Daniel

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      • #4
        He should have been told something about his injury long ago. He already knows something is seriously wrong, and worrying about what that is can nearly be as bad as the truth.

        Call his physician and plan to meet the physician at his bedside and tell him about his injury. Don't let the physician tell him it is definately complete, or that he will not improve though. It is too soon to tell that. Ask the physician before had what he plans to tell Jeremy.

        What is the truth is that right now he is paralyzed, and that he will need to work hard in rehab to learn to use the function that he has, and hopefully will be lucky and will get more back. No one can tell how much or if he will get return at this point. It is important to both be honest and to sustain hope at this stage.

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          Tell it the way it is

          Back in the day (1977) my Physician told me directly (that night) my condition. I was 20. I didn't face depression. I realized in the ambulance I was paralyzed. Be honest and direct and upfront. Sugar coating does nothing. JMO

          Please update or email me.

          Good Luck and hang in there.
          Lynarrd Skynyrd Lives

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          • #6
            Tell him the truth. Just don't say forever. Tell him nobody knows how it will work out.
            Blog:
            Does This Wheelchair Make My Ass Look Fat?

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            • #7
              Wow...... Noone really told me, i just knew it. But as a quad, i had shoulder and slight arm movement from the get go.

              I too vote tell him, explain abit, and very simply, what has happened, and stress only time will tell.

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              • #8
                I'm a new member, so sorry to stick my nose in where I dont' know what's going on - but do tell him right away as soon as you can. Don't tell him there's not going to be any recovery or that he'll never move again - don't tell him the injury is complete, but do tell him what you know. Keeping it from him is only going to spark resentment, terror, fear, and massive amounts of stress which he does not need.

                Knowing will produce grief and hurt, but that will come no matter when you tell him. Let it come without the resentment, or without as much of it as you can prevent at this point.

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                • #9
                  I recall that it felt as though I was buried up to my neck in the sand at the beach. Everything felt so heavy.

                  Best wishes for a good recovery.
                  "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

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                  • #10
                    You need to tell him, explain his injury a little, tell him that every SCI is different as is the possibilty of regaining function, independance and so on.

                    I pretty much said the same things your nephew is coming out with and hadn't realised that I was paralyzed, or didn't want to realise that I was, I was convinced that it was something the doctors had done to me...
                    It was about six weeks before someone actually told me and then it was my parents, they focused on the negative stuff, all the things I wouldn't be able to do, all the stuff I could no longer control and would have to have other people do for me. Those words stayed with me a long time and I let them stop me becoming as independant as I could be.
                    I'm not saying that you should pretend that everything is going to be ok because it wont be nor will it be easy, but that you should try to help him to focus on the things he will still be able to do, the kind of life he could lead, don't let him give up and be there when he needs your support.

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                    • #11
                      Tell him honestly. He clearly wants to know, but have a doctor there to answer his questions.

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                      • #12
                        They never do

                        When I came to from my accident, I knew I had broken my neck. I couldn't move.
                        They must of known as soon as I was transferred to the spinal unit and taken x-rays that I had broken my neck and that I was a c5 complete which I am. First they say that the swelling around the injury and fluids and that make it impossible to say. Then I asks my dad will I be in a wheel chair for the rest of my life and he says hes not sure. I may need a wheelchair for a bit. But I think they do this to break you in slowly to what has happened that your very severely handicapped and have lost your independence for good. Thinking back on it I wished they had told me sooner rather than holding out false hopes. But may be then I wouldn't of tried so hard in rehab when you keep on thinking if I works hard Ill get some feeling and movement iinto my hands. Your arms gets stronger but your hands remain useless thats the trouble.

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                        • #13
                          Originally posted by steve.c
                          When I came to from my accident, I knew I had broken my neck. I couldn't move.
                          They must of known as soon as I was transferred to the spinal unit and taken x-rays that I had broken my neck and that I was a c5 complete which I am. First they say that the swelling around the injury and fluids and that make it impossible to say. Then I asks my dad will I be in a wheel chair for the rest of my life and he says hes not sure. I may need a wheelchair for a bit. But I think they do this to break you in slowly to what has happened that your very severely handicapped and have lost your independence for good. Thinking back on it I wished they had told me sooner rather than holding out false hopes. But may be then I wouldn't of tried so hard in rehab when you keep on thinking if I works hard Ill get some feeling and movement iinto my hands. Your arms gets stronger but your hands remain useless thats the trouble.
                          At the start the doctors don't really know what, if any recovery anyone with SCI will make, there are quads on here who walk, many who have good jobs, great social lives, families and all that, there are also those who don't regain function or much independance. I don't think anyone gave you false hope, they just didn't know. Trying hard in rehab can only be a positive thing. My parents were convinced my life was over that I would be completely helpless, I believed them and I didn't try hard enough, if I had I would be far more independant than I am.
                          Last edited by loco; 07-03-2006, 01:01 PM.

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                          • #14
                            I find it hard to believe that either docs or nurses would have said nothing to him about his present condition; ie, that his 'neck was broken' or something along that order.

                            Could it possibly be that he has heard the 'paralyzed' word, and is in very, very deep denial?
                            _____________

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                            • #15
                              Rehab!

                              Hi all

                              Been awhile since I gave an update on Jeremy. They moved him to Frazier Rehab yesterday - the 13th. So he was in CCU for almost 4 weeks.

                              I have been out of town due to a death in the family (its been a terrible summer for our family) so I havent been up to see him there yet.

                              My sister said the docs were going to do their eval today and then go from there. They are still calling his injury complete and severed although we have doubts due to the fact he already has more strength and feeling on his left side (arms, fingers etc)

                              He is in remarkably good spirits and has a very positive attitude which we believe will get him far. I will keep you all posted on his rehab and recovery.

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