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  • #46
    Originally posted by reedyd View Post
    I really do applaude you wives that are willing to do these things. I hope your husbands really do appreciate you.
    David
    Hey David...there are HUSBANDS out here doing the exact same thing BTW!

    :-)

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    • #47
      Originally posted by newc6c7wife View Post
      My husband was injured in an accident in Jan and will hopefully be coming home from rehab in May. He is c6,c7 and has very weak, limited hand function. I am going to be learning how to take care of his "bowel management program" on my own this week at rehab. I am terrified and mortified. I never imagined being in this situation. He has told me some of what is involved in this, but I know he is too embarrased to let me know all the details. Any other wives out there who can give me any advice on how to get over this?
      i am SO glad you are asking for advice!! you have gotten some positive stories and i hate to be the debbie downer of the group but...

      1st: i was injured in 1985 2 months shy of my second birthday. i'm C5-8 + T2&3 + traumatic brain injury. however i didnt get to rehab until i was about 3ish? i was treated at what was then called shriner's children's hospital in san fran, california. i went thru the regular rehab stuff. they tried to teach me how to cath with an anatomically correct doll and then made me do it on myself with a mirror. to say i was grossed out is an understatement. so my mom had to take over my care. my dad helped until around age 7 when i asked mom to do it.

      according to my mother she got 0 help. as a result of my TBI i became super OCD about getting dirty. and i could still tell when i had to pee. so i'd cry when i knew i had to go (plus it was painful). it was more painful because i had to wait on mom to finish cooking/cleaning and she continued to have children (i was 7 when my 1st lil bro was born) so not only did she have to deal with my needs, but a newborn as well. my dad was often not home because he worked 2 jobs to support the family.

      this quickly lead to abuse.

      my mom would often gag when doing my bowels, if i had an accident, she'd mutter "i am so sick and tired of this", if i wet teh bed she'd slap me in the morning and shout how she was tired of "this" and tired of me, if i cried to be changed or cathed in the middle of the night, she'd hit me and tell me to shut up because i could wake the baby, my older brother or my dad. her way of trying to get me to at least cath on my own was to slam me down on chucks, throw all the supplies at me at scream that she didnt care if i pissed myself i had to do it myself because she wasnt going to anymore. so i'd be bawling my eyes and so grossed out that i couldnt get the catheter in, and always would insert into my vagina. but if i cried to get another catheter, she'd beat me for interrupting and for putting it in the wrong hole or i'd get beat if i peed on myself in the process. bowels were usually the same, plus her gagging.

      as a kid i internalized it all. and really only in the past 4 years (i'll be 27) have i gained a healthy image of myself (some other things have happened along the way but this was really the major part of it). you know if mom hated doing it, then why should i? at 7 years old i was seriously considering suicide/death. my lil bro was my saving grace. so when mom was done with her anger spells, she'd leave the baby in the bedroom with me and my older bro.

      i gained independence with my regimen when i was 15 thru the help of those at Strong Hospital's Kirsch Center. and crazy of all crazies, she fought me on that issue too

      i also know that adults internalize things too. yes it's gross but you are doing the right things by asking questions and getting feedback.

      TAKE.THEIR.ADVICE. get all the help you can, talk with your husband openly and honestly so that when frustrating times with "the plumbing" goes awry--and it will--you guys will have a solid foundation with which to handle it. humor is your greatest ally along with your love for your husband, dont be afraid to say "i dont think i can do this" it is quite alright, be open to everything but learn to be discerning and ENCOURAGE his independence in a way that makes it more about wellness and good for him rather than it being such a burden on you and could he please hurry it up? know that you both will make mistakes, but that is ok.

      my mom now works with the mentally disabled and treats them with dignity and respect. i wish i had had that from her when growing up. our relationship isnt great (love her a lot, but i do not like her at all) but i'm not wishing she'd take a long walk off a short pier anymore. to those parents who have posted on this thread and others, BRAVO to yall!! you are an asset and i really hope your children appreciate you.

      phew. now who wants a drink after that? i know i need one...
      "Smells like death in a bucket of chicken!"
      http://www.elportavoz.com/

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      • #48
        ps: i also know my mom didnt intentially do what she did. even when pregnant, she would walk a total of 6 miles in the afternoons to go to my school and cath me. this was on top of the 6 miles in the am for dropping us off and going home and doing the same when school was out. burnt out really doesnt begin to cut it. this was pre ADA. the only accessible place she could take me was the library (i am sure she was thankfully that i could already read around the time of the accident--yea i was one of those freaky child geniuses you hear about on tv) so that was another 4mile totale trip we'd take 1x/week in my radio flyer wagon. she had the choice to institutionalize me when i began school but fought the school board to mainstream me in a time where that wasnt even heard of. so i know my mom loves me, just wasnt really capable of taking care of me (or dealing with my injuries/personality. lol she still doesnt know how to deal with my personality but she says she's "given up").

        sry to rant but this is so dear to my heart. ask.ask.ask.ask.ask! the only stupid question is the one that goes unasked.

        i also forgot the spouses. GO YOU!!!!!
        "Smells like death in a bucket of chicken!"
        http://www.elportavoz.com/

        Comment


        • #49
          Originally posted by crypticgimp View Post
          ps: i also know my mom didnt intentially do what she did. even when pregnant, she would walk a total of 6 miles in the afternoons to go to my school and cath me. this was on top of the 6 miles in the am for dropping us off and going home and doing the same when school was out. burnt out really doesnt begin to cut it. this was pre ADA. the only accessible place she could take me was the library (i am sure she was thankfully that i could already read around the time of the accident--yea i was one of those freaky child geniuses you hear about on tv) so that was another 4mile totale trip we'd take 1x/week in my radio flyer wagon. she had the choice to institutionalize me when i began school but fought the school board to mainstream me in a time where that wasnt even heard of. so i know my mom loves me, just wasnt really capable of taking care of me (or dealing with my injuries/personality. lol she still doesnt know how to deal with my personality but she says she's "given up").

          sry to rant but this is so dear to my heart. ask.ask.ask.ask.ask! the only stupid question is the one that goes unasked.

          i also forgot the spouses. GO YOU!!!!!

          WOW! You are so strong.

          Don't you just hate it when people say that(as a caregiver I get that all the time along with "oh I could never do what you do")...haha. Seriously though, I give you soooooooooo much respect. As a father, I can not imagine treating my daughter like that. But as a caregiver, oh man do I feel like saying F U to my wife sometimes due to the immense stress and frustration the care giving process brings.

          No excuse for how your Mom treated you, but I can empathise about the burden that she carried. I'm so glad you made it out alive and "intact".

          You girl, are amazing!

          Comment


          • #50
            Originally posted by swharris View Post
            ............
            I only have to do this on weekends, since our assistant takes care of my wife M-F during the mornings so lucky me can go to WORK ;-) I'm sorry to say though, that it has really affected the way I view our life together...I hate to admit that.
            Don't be sorry to admit anything SW ..... each situation is unique and what works for some can't or won't work for others ... there are just too many factors involved. I don't want anyone to come away from this discussion feeling inadequate or like they love their partner any less for not being able to cope with managing a bowel program. We are not robots and we come with a miriad of feelings and experiences that allow us to navigate the muddy waters of sci ..... feeling supported and understood are so important ..... we here in caregiving should know that better than most.

            Obieone
            ~ 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


            • #51
              Originally posted by crypticgimp View Post
              ............
              sry to rant but this is so dear to my heart. ask.ask.ask.ask.ask! the only stupid question is the one that goes unasked.

              i also forgot the spouses. GO YOU!!!!!

              Crypticgimp .... thank you so much for your honesty ... but I'm so sorry for what you had to endure as a child. As parents we probably all have done some thing we're ashamed of but I suspect your Mom now lives in her own personal hell for what she put you through ..... for you to be so forgiving and understanding of all that was going on in her life at that time shows a level of maturity few of us ever attain.

              You are a very special person Crypt and I am so glad you found us .... how fortunate are we here at CC that you are willing to share such intimate details of your life with us ..... I hope we too enrich your life in some small way ..... blessings ......

              Obieone
              ~ 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


              • #52
                I was just thinking .... maybe your Mom working with mentally challenged kids now is an attempt to try and repair all that bad karma she created raising you .... we can never go back but when we know better we do better (is my prayer) ....... not making excuses for her but she must have had a real battle going on in her head and there was very little emotional support for people having to deal with all those difficult aspects of sci then !

                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

                Comment


                • #53
                  Originally posted by Obieone View Post
                  I was just thinking .... maybe your Mom working with mentally challenged kids now is an attempt to try and repair all that bad karma she created raising you .... we can never go back but when we know better we do better (is my prayer) ....... not making excuses for her but she must have had a real battle going on in her head and there was very little emotional support for people having to deal with all those difficult aspects of sci then !

                  Obie
                  i think so too, partly. i just hope i can add something to the table, warn ppl that it doesnt have to get bad, that it's ok to feel grossed out or mortified and there are ppl there who know where ur coming from.
                  "Smells like death in a bucket of chicken!"
                  http://www.elportavoz.com/

                  Comment


                  • #54
                    Originally posted by Obieone View Post
                    Don't be sorry to admit anything SW ..... each situation is unique and what works for some can't or won't work for others ... there are just too many factors involved. I don't want anyone to come away from this discussion feeling inadequate or like they love their partner any less for not being able to cope with managing a bowel program. We are not robots and we come with a miriad of feelings and experiences that allow us to navigate the muddy waters of sci ..... feeling supported and understood are so important ..... we here in caregiving should know that better than most.

                    Obieone
                    Obieone said exactly what I would if I were able to articulate as well.
                    Sorry to piggyback Obie.

                    Comment


                    • #55
                      Great stories and experiences voiced. Amazing resolve of the human spirit.

                      To me, it all speaks to the word: independence. The more independent, the more empowered, in all aspects of life.

                      Dependency, especially when it involves bodily functions, is a tricky situation that, from what I've experienced and witnessed, usually ends up in resentful / fractured relationships no matter how much someone "loves" another. It's really tough to consistently navigate week after week, month after month, etc.

                      Obviously, in some cases, it's a necessary necessity and reflective of each person's unique position / situation. However even the highest level of injuries / disabilities can attain, if not improved independence, at least improved dependence by utilizing current medical products and procedures for better / easier (on the caregiver) methods of bowel / bladder care that significantly improve the physical, psychological, emotional dynamics that inevitably arise and challenge the relationship.

                      Personally, I think that everyone with a physical disability, not a cognitive one, should strive for every shred of independence they can attain. I applaud those who do and have great respect for them.

                      Good luck to all, onward and upward.

                      Comment


                      • #56
                        Hope I can help

                        My husband is c-5 c-7 imcomplete sci for 11 yrs now . The first year I did everything my self. I just jumped in there steming /suppositorys . He did use a bed side commode but he also had a lot of accidents . But honestly you figure it out . It not as bad as it seems. I have done things for him I could never imagine doing .. People tell me my calling is to be a nurse . lol I say no thats not for me . I also use baby wipes and a garbage can with a good plastic bag. We also have disposable under pads . He is lucky to have the insurance pay for them . Lately life has changed and he has a lot of accidents and Im still doing it my self .You learn as you go what you dont know you ask . I have done everything from home iv for uti to wound care it all seems over whelming but if you are willing to stick in there then good for you and good luck.

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                        • #57
                          Personally, I think that everyone with a physical disability, not a cognitive one, should strive for every shred of independence they can attain. I applaud those who do and have great respect for them.
                          EVERYONE with a disability, regrdless of the type, should have the right and opportunity to become as independent as possible.
                          It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                          ~Julius Caesar

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                          • #58
                            thehipcrip: my point is/was that sometimes a cognitive disability such as a TBI doesn't allow the individual to gain independence because cognitively they don't know how. Of course everyone is allowed but whether they can or cannot perform their ADL's obviously has a big impact on their independence.

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                            • #59
                              still waiting for u to PM me. i can give u a lot of good ideas for ur husband.
                              http://www.dsportsman.com

                              Comment


                              • #60
                                good luck
                                Last edited by spike; 06-29-2010, 10:47 PM.

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