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    #31
    We have been together over 20 years, maybe that makes a difference.
    There is nothing I would not do for him. We are making the best of things even if this is not how we planned on living the rest of our lives. That being said, I agree it is not ideal.
    Thankfully we have aides 4 or 5 days a week.

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      #32
      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?
      Hey Verdana, my son is 18 years old, and I have had to learn his bowel routine (C5/6 tetra) as well as the main caregiver for cathing etc... At the risk of sounding crude, it is not a big deal, once YOU are comfortable with it. We put our son on the commode, and i insert a suppository up the rectum, and then, usually, I have to give him digital stimulation with my finger once, twice or even three times before he can have a bowel movement. We find it is important to keep to a set time frame each day, and once we both got over the embarrasment? if that is what it is, then things were easier. Remember, if he was in a rehab hospital or similar, people he did not know were performing this task! Again once you get over the unusual ritual, it does become routine.............
      Hope this helps!
      Alberta (Canada)

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        #33
        Hmm..It never really bothered me. I guess I'm weird, but the way I see it...its in there and it needs to come out. And I would rather do it, then have some other woman do it ya know. But Brian always took sh*ts in front of me before his wreck, so I guess thats another reason it didn't bother me. And make sure you don't act funny while your doing it, because I promise you it is hurting him more than it is hurting you. Make a joke out of it.."Damn that sh*t stinks" and laugh. Its no big deal, if you make it a big deal its only going to make things worse. And I don't see how digital stimulation could effect your personal life, honestly I don't think about digi when we are getting intimate. But I guess everyone is different. And oh yeah, encourage him to push when you do it. Bowel was one of the first things to come back for Brian. Good Luck!
        You never know how strong you are until being strong is the only choice you have.

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          #34
          Originally posted by alberta View Post
          Hey Verdana, my son is 18 years old, and I have had to learn his bowel routine (C5/6 tetra) as well as the main caregiver for cathing etc... At the risk of sounding crude, it is not a big deal, once YOU are comfortable with it. We put our son on the commode, and i insert a suppository up the rectum, and then, usually, I have to give him digital stimulation with my finger once, twice or even three times before he can have a bowel movement. We find it is important to keep to a set time frame each day, and once we both got over the embarrasment? if that is what it is, then things were easier. Remember, if he was in a rehab hospital or similar, people he did not know were performing this task! Again once you get over the unusual ritual, it does become routine.............
          Hope this helps!
          Alberta (Canada)

          For me at least, i've always felt more comfortable with strangers like say new aides do personal care instead of family or a girlfriend. I still vividly remember before i got my SP catheter, i was doing the cathing deal, but couldn't do it myself because my fingers don't work. Well, one day while on a weekend pass from inpatient rehab, i badly needed a cath, but because i still have sensation i knew that i was sporting Mr. Boner under my pants which happened constantly back then because i wasn't on any muscle relaxers. I tried waiting out the stiffy, but couldn't no longer and she had to do the cath. Sitting there in my chair while my friggin mother is trying control my spasms as my body is spasming like crazy as she's attempting to cath my boner is something you don't get over quickly, at least i didn't.

          She said all the right things afterward as she could easily see how embarrassed i was over the situation, but it was moments like that early on that it hit me square in the face that my life was permanently altered in a way i could never ever have envisioned. When healthy i always new it was possible that one day something could happened that injured me badly, but i never could have envisioned a day would come that my own mother would be struggling to jam a piece of silicone into a boner of mine. It's was over and i remember siting there thinking, did that really just happen?

          Sounds though like your son can deal with family doing personal cares that i could which is good for him. Instances like i mentioned and others where my mom/sister had to do personal cares which i found incredibly awkward just left me pretty much desperate to both want to figure out ways to do my own care and/or gets aides to help with the rest.

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            #35
            Originally posted by newc6c7wife View Post
            We have both questioned this several times and the nurses tell us it is because they don't have time.
            That is an utter disgrace. Rehab hospitals are called 'Rehab' for a reason. Report them
            C5/6 incomplete

            "I assume you all have guns and crack....."

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              #36
              It is discouraging to see that some of the same things are happening in Canada as in the U.S. with our wrecked health care system. We are at a point where nursing care is almost non-existent on many units. This includes rehab units. The excuse that nurses do not have time to do essential care is commonplace and legitimate. In the early 1990s cuttbacks in nursing staff were initiated in an effort to curb rising costs. The cuts have continued to the point that people who need significant assistance must put together a team of family/friends to care for them during hospitalization. It is much like families provide care in 3rd world countries. I estimate that many units are operating with less than 50 percent of the nursing staff they need. Because personnel costs are the largest part of hospital expenses, this is where significant reductions in cost can be made. Sadly, in doing their workforce reductions, the highest paid nurses were the first to be terminated, in other words, those who were most experienced. The keywords of hospital CEOs are "streamlining" and "efficiency." From a patient standpoint, they translate to neglect and mistakes. Both practices are largely responsible for the large number of medical errors being committed these days. Cutting corners can be deadly.

              For those of you who have taken on the responsibility of providing your loved one's care at home, my advice is for you to have some backup for when you get ill or cannot be there for some reason. Without that backup, your situation is a disaster waiting to happen that I have seen too many times.
              Last edited by SCIfor55+yrs.; 2 Apr 2010, 1:34 PM.
              You will find a guide to preserving shoulder function @
              http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

              See my personal webpage @
              http://cccforum55.freehostia.com/

              Comment


                #37
                Ok, I haven't heard anything about colostemy's,wife is c5&c6 and she had her's done about a year and a half ago and it's a huge load off, just kidding, but seriously it's much easier. much, much easier. and if he has some hand movement he can do it himself. and if he get's to the point it can be reattached. just a thought, check it out.

                Comment


                  #38
                  SCI55yrs: I don't disagree with your perspective but from a hospital / rehab perspective the economic reality has hit every industry upside down and sideways. Just a liitle food for thought even though it is perverse from our general thinking but needs objective consideration: When the economy slows down, industries slow down, jobs are eliminated which require less staffing and an emphasis on expense / overhead management regardless of business sector. A hospital of any kind is a business. Most are profitably managed by census or bed count. Less patients = less beds being filled = less $$ to care/manage. With SCI for instance many patients (10-15%) are, unfortunately, injured on the job, i.e. falling from a home being constructed, roof repair, tree management, etc. So, with a falling economy there are less industries = less jobs = less injuries = less bed count = less hospital revenue = necessity to cut staff/overhead. It's one of the realities of the ripple effect of economic recession / depression and no one or no business is immune. One the one hand less jobs = less injuries (hooray) but it also means less $$ (care, equipment, etc.) for those that are. Like I said, kinda perverse huh?

                  Spike ~ my previous post echoed your sentiments concerning a colostomy as a bowel management option. Agreed.


                  Onward and upward..

                  Comment


                    #39
                    You can do it! I never thought I would be able to feel where the poop is and where the soft tissue is. But after awhile, you will be an expert. Laughter is what gets us through any embarrassment. Funny, never thought I would be laughing with my son about such things, and you with your husband no doubt. Life is too short to let poop and modesty get in the way. Your husband is lucky to have you to help him. I am not so sure about a C6 doing th bowel program alone. Yes, there are tools to insert suppositories, but tissues are delicate and the cannal is not always straight, Jake's tilts to the back, and then the clean up is huge. If you don't get really clean, you get skin issues. I can see where C6's need help. Jake actually sits on the commode chair and works on the computer, drinks coffee and yes, eats breakfast too. It is really a time saver in the morning. With getting up, stretching, pooping/eating, showering and dressing, the quickest we can do it in is a little under two hours. So, eating breakfast at the same time saved about a half hour.
                    I am the only care giver for Jake, it can be done. You have to have lots of energy and commitment. Ask me anything, we have most things figured out pretty smoothly.

                    Comment


                      #40
                      Originally posted by mfrench View Post
                      You can do it! I never thought I would be able to feel where the poop is and where the soft tissue is. But after awhile, you will be an expert. Laughter is what gets us through any embarrassment. Funny, never thought I would be laughing with my son about such things, and you with your husband no doubt. Life is too short to let poop and modesty get in the way. Your husband is lucky to have you to help him. I am not so sure about a C6 doing th bowel program alone. Yes, there are tools to insert suppositories, but tissues are delicate and the cannal is not always straight, Jake's tilts to the back, and then the clean up is huge. If you don't get really clean, you get skin issues. I can see where C6's need help. Jake actually sits on the commode chair and works on the computer, drinks coffee and yes, eats breakfast too. It is really a time saver in the morning. With getting up, stretching, pooping/eating, showering and dressing, the quickest we can do it in is a little under two hours. So, eating breakfast at the same time saved about a half hour.
                      I am the only care giver for Jake, it can be done. You have to have lots of energy and commitment. Ask me anything, we have most things figured out pretty smoothly.
                      Humor is a good thing to have in life mfrench, you sound like you have it down. That is how we have survived. Even when things are not very funny we have found humor.
                      The hardest part for me is getting Dave straight on the commode. On the week-ends or days no one comes over a family member usually comes over and helps me get him on it. We have some "modesty" towels (or "hootchie towel" as my sister calls them) and it really is not a big deal.
                      We have a lifetime friend who will be able to do it if there is an emergency. She came over one day and learned and that is that.
                      (Before anyone gets mad at me, I know this is not a funny subject. I'd give anything to go back in time and change things)

                      Comment


                        #41
                        Finding humour in the un-funny is imperative to survival ....... before Bill had his ileostomy he had the occasional involuntary bm ..... when it would happen he would take a sniff, look around, and then promptly blame the cat ... wheel off and tend to his business. Truthfully its the biggest reason we keep our pets .... when all else fails blame it on the dog !!

                        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


                          #42
                          Originally posted by mfrench View Post
                          I am the only care giver for Jake, it can be done. You have to have lots of energy and commitment. Ask me anything, we have most things figured out pretty smoothly.
                          Please heed my warning:

                          For those of you who have taken on the responsibility of providing your loved one's care at home, my advice is for you to have some backup for when you get ill or cannot be there for some reason. Without that backup, your situation is a disaster waiting to happen that I have seen too many times. __________________
                          You will find a guide to preserving shoulder function @
                          http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                          See my personal webpage @
                          http://cccforum55.freehostia.com/

                          Comment


                            #43
                            I help my wife who is a C5/C6 a few times per week. It has not impacted my feeling for her one bit. She is a beautiful, remarkable women. Helping her with her program does not change that at all. I still feel lucky everyday I am with her. I had a great nurse in rehab at U.W. Madison who has lived and loved her Quad husband for over 20 years. She taught us what is possible and that the bowel program and showering are just part of life. She did recommend we get help and we have done so, but it is only so I can go to work and earn a living. I still do the program twice a week. It has only been six months, but the bowel program seems like just a part of our life.

                            Comment


                              #44
                              Originally posted by Obieone View Post
                              Finding humour in the un-funny is imperative to survival .......

                              Obie
                              Amen. I do think we need to sometimes make relief of what pains us by finding humor, even if dark, in it.

                              I can watch Holocaust films and listen to My Heart Will Go On and cry like a baby. Yet I can laugh my ass off at Holocaust jokes made by Joan Rivers or SNL making fun of CĂ©line Dion's song. It's amazing how polar opposites our emotions can be over the same thing.

                              Comment


                                #45
                                Maybe this is obvious, but disposable gloves are mandatory. Talk about the weather, your upcoming day, ect. Oh, and get a soft mat or something, it can be hard on the knees. Try to take both your minds off off the task...sort of hard I know when all your senses are being assaulted ;-) Also be careful not to strain your wrist or forearm. It has happened to me(straining a tendon), when in the middle of the stim, a spasm comes. You just have to let it pass and try again.

                                Try to stay positive and leave the room for a minute if you need a break.

                                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.

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