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Need advise, am I hurting progress of my SCI husband

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    #31
    [quote=Tiger Racing]You're welcome.

    Did you just want reassurance that you're doing the right thing or did you want honest input? What you got is honest input and in time, hopefully, you will be honestly grateful for it and will drop the defensiveness.

    A little sensitivity would have been nice.

    Seriously? Where was your husband rehabbed? For how long? How was he injured and have you had trouble with insurance or other funding to do whatever rehab and therapy that might be suggested for his injuries? It seems very, very odd that nobody has ever suggested to either you or your husband that he should learn to do everything that he can for himself. Not a single therapist, nurse or doctor ever suggested that someone with your husband's level of injury could be independent? Do you really need to hear that from an outsider? The concept isn't inherent?

    Where does it matter...the bottom line is we've just been trying to live with this new way of life. If I didn't need to hear it from an outsider, I wouldn't have asked. Some of you are making me sorry I did.

    That's great. Assuming that his injuries were not such that this goal was unrealistic, then it's wonderful that your husband was able to reach it. So if he could push himself this far, this quickly, then what is stopping him from pushing further?

    Not knowing how...

    Of course providing for your family is important, but how is pushing for independence contradictory to that? And, yes, at this point your husband may need to get up at 4 or 5 am in order to be ready on time, but it will get better over time. How else is he supposed to become more efficient if he doesn't work at it? The longer you do things for him, the longer it will take for him to learn to do things for himself.

    Yeah...I think we have figured that out TIGER RACING.

    Don't snap at Kate. All she did is answer your question based on her experience and knowledge.

    Again, a little sensitivity...I hope I don't lose mine after a few years...I hope I can help people that are new to this injury someday.


    Have you spoken to his employer about this? Did you have a good relationship with his employer before your husband's accident? Is the lack of support based on ignorance of the extent of injury and what it takes to come back from that or is it a lack of patience with the same? You don't say what your husband does exactly. Could he make changes in his schedule overall or in how he does his work to accomodate his disability either for the short term or the long haul? Would discussing this with his employer reassure him that some delays and accomodations will likely be temporary and adjusting for that will ensure that a valued employee will be around for awhile and a new employee won't need to be found and trained? Turnoever is usually rather costly for employers. Reminding your husband's boss of that may help.

    You have no idea here what's at stake, so I won't respond.

    I have looked at this nightmare as something that happened to US. We are a team and have been for over 20 years. So, in my mind, I've just been doing my part to help him. I get it, I have gotten the message LOUD and CLEAR. Obviously, we need constructive advice, that's why I asked. I just wasn't prepared for some of the response I got.

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      #32
      Thanks Obieone, ergvepeog, Shelly and Marmalady for your understanding. I am new to this, but can already see that every injury is different and therefore every recovery will be different.

      Comment


        #33
        Nari,

        OMG, sorry that this has made you feel bad. I answered your question from the SCI side of my brain. Now, I'll share the other. My fiance was injured with me. He is now blind and has a SEVERE deficit from his TBI. I am his caregiver.

        It kills me to watch him struggle. I hate his fear and frustration. And I miss him, the man who used to pick me up in his big strong arms and look at me with so much love that it stopped my breath. At first I did everything for him, including feeding him. Until a week ago I was still cutting his food until we were unable to sit side by side at a party and he managed pretty well on his own. Now I refuse to do that for him reminding him of how well he did on his own and that all he needs is more practice to get even better at it.

        In no way did I mean to imply that you were hurting your husband. It is probably true that he can, over time, learn to be even more independent. It is true that you need to support that.

        However, every situation is different. None of us can truly know what another is going through. I go back to my rehab facility and mentor there. I absolutely HATE it when someone there will say to me "Oh, you're still using a slide board after all this time?" or whatever. They don't know why I've made the decisions that I have. I live independently and care for a home, a job, a child and a disabled husband. I have struggled with my own complications that have nearly killed me. The last thing in world I need is someone making me feel bad about what I'm not doing....

        The point is, you and your husband have been thrown into a very difficult situation and you are doing everything you can to cope. Pick your battles but do continue to fight. As others have already said much more eloquently, this is still very new for you guys. It will get easier.
        My blog: Living Life at Butt Level

        Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

        "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

        Dawna Markova Author of Open Mind.

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          #34
          Nari,

          I'm sorry you were hurt by the straightforwardness of some of the posters. But I agree with all of them that you ARE doing too much for your husband, But at 6 months post he is just beginning to recover. It sounds like financial necessity has forced him to go back to work sooner than might be best for his recovery. But as posters have said, If he doesn't get the opportunity to practice, he will never gain the skills he needs to be independent. I also think people missed the point that he had to be at his desk at a specific time, I know I assumed that working 90% from home meant some flexibility.

          At 6 months post it easily took me 2+ hours to get ready to go in the morning, ANd at that point I was to tired to do anything. The other day (I am almost 2 years post) I was out of the house in under 30 minutes. But realistically I plan on an hour in the mornings. I think your idea of starting wiht weekends is good, then start adding to the workdays, even if it means starting earlier.

          Best wishes to you and your family. Welcome to CC.
          T7-8 since Feb 2005

          Comment


            #35
            Nari,

            I am very impressed with you and your husband! Sounds to me like you both are working through things very well considering.

            My experience since I got hurt 2 yrs ago, Me & my family are to this day finding ways to make OUR lives easier. Many, many tough days/months, but it does get better/easier with time.

            IMO everyone should have goals of doing more for themselves, but no one should be giving others a time line on when they should reach those goals. But that is my opinion and obiviously not the opinion of some others on this forum. That is something to keep in mind here, some are very "vocal" on the forum, but they by no means represent the sci community as a whole. Take each of us as one person's opinion.

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              #36
              Thanks JMILLER11. I really appreciate your opinion. We are of the same mind set. What works for one person is not going to always work for someone else. I would NEVER berate someone because they did it differently. Of course my husband wants to be independent. His goal when he came home was to not need me in 90 days. Well, everything has been much harder than we thought. He had to fight to get his job back and that has been our main focus. I am extremely proud of him. His attitude and spirit inspires me.

              I think people also need to realize that not all rehab facilities are the same. Let's face it, financially and logistically, sometimes we get what we get.

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                #37
                Nari Check your PM's. I sent you one yesterday....
                T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                  #38
                  I have a question about not cathing in the middle of the night as everyone has suggested. We were sent home from rehab with a 4 hour intermittent schedule. I believe he has a flaccid bladder not spastic. We have gone to 6 hours now unless he feels like he has to go sooner. Is it safe for him to go 8 through the night?

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                    #39
                    I wonder if one of those Clappers might be helpful in the middle of the night? I've been meaning to get one myself for years. They turn the light on/off.

                    Clap on! Clap off!

                    http://www.youcansave.com/clap.asp
                    Blog:
                    Does This Wheelchair Make My Ass Look Fat?

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                      #40
                      Originally posted by NARIDEVOLI
                      Thanks JMILLER11. I really appreciate your opinion. We are of the same mind set. What works for one person is not going to always work for someone else. I would NEVER berate someone because they did it differently. Of course my husband wants to be independent. His goal when he came home was to not need me in 90 days. Well, everything has been much harder than we thought. He had to fight to get his job back and that has been our main focus. I am extremely proud of him. His attitude and spirit inspires me.

                      I think people also need to realize that not all rehab facilities are the same. Let's face it, financially and logistically, sometimes we get what we get.
                      You hit the nail on the head Nari. You have much to be proud of. The fact that he is back at work after 6 months is awesome.

                      Come here for ideas and support (hopefully you'll get what you need most of the time).

                      I think because people are very proud of what they have accomplished, (and so they should be), they sometimes forget that it may not be the same for everyone else.

                      I remember someone on the site specifically saying that he kept having help for his bowel program and getting dressed because if he had to do it on his own he wouldn't have the energy to do anything else.

                      Pick what is most important (which you have done), and keep trying to move forward at whatever pace is best for you and your husband.

                      Keep coming back!!

                      Shelley

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                        #41
                        Thanks Shelly!

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                          #42
                          Originally posted by NARIDEVOLI
                          I have a question about not cathing in the middle of the night as everyone has suggested. We were sent home from rehab with a 4 hour intermittent schedule. I believe he has a flaccid bladder not spastic. We have gone to 6 hours now unless he feels like he has to go sooner. Is it safe for him to go 8 through the night?
                          How much is he peeing after 6 hours? Is he restricting fluids for a few hours before bed? Is the condom cath an option? (I always envied men that possibility. So easy to strap one on at night, attach a leg bag, and sleep straight thru!)

                          They sent me home on a 4 hr. schedule initially too.

                          SCI Nurse will probably have good advice on this. This early I'm sure he needs a lot of sleep. When his body has healed more, 6 or 7 hours of uninterrupted sleep won't feel so much like sleep deprivation.

                          About 6 months out I had to start skipping naps (had to ride a bus downtown for experimental PT, then back, cook supper, tend to house/kids, etc., it all took the full day, husband was working out of state), that's when I learned to go 6 hours at night w/out cathing. You also learn to catch up on your rest on the weekends.

                          I'm c5-6 incomplete btw.
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

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                            #43
                            It varies. Sometimes 300cc sometimes 600-800. Occassionally more. How does the condom cath work? DOes the cath get inserted and sit there all night? Sorry I don't know this stuff...

                            Comment


                              #44
                              Keep in mind that next year when you are looking back on this year.....you will be amazed. No matter how slow your husband has to take it to get independent just dont give up. As I said, he is already amazing for having returned to work so soon. It is different for all of us so we have to judge our own situations.....

                              Just take care of yourself and your kids and dont be afraid to ask for help. People alot of times are willing to help if they are just asked. I know that is hard for an independent person and your husband must be very independent or he would still be in bed!
                              T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                              My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

                              Comment


                                #45
                                Condom cath doesn't go in, it goes on the penis just like a condom, has adhesive at the top to keep it on. I'm no expert LOL, but I believe that some have a hole and tubing at the bottom connecting it to a nightbag that hangs on the side of the bed. I guess it won't work if his urine all stays in until he caths. I'm a little clueless about the finer points of male sci peeing.


                                Again, need to wait for sci-nurse. Seems to me that if he would notice his fluid intake before bed, see how much he caths given various intakes, he should eventually be able to gauge it. If he doesn't drink after 6:00 p.m., caths 300 ml 4 hours after bedtime, he should be safe going 8 hours?

                                Seriously, I'd start a chart and try to find the pattern.

                                Possibly a lot of health professionals will tell you not to do this, but an awful lot of us do it. We're also told to get plenty of sleep nightly, so like everything, you'll have to weigh the pros/cons.

                                Daisy is right, in a year you'll be so glad this year is over, and amazed by how far you've both come.
                                Blog:
                                Does This Wheelchair Make My Ass Look Fat?

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