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Need advice re adult daughter T9 complete

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    Need advice re adult daughter T9 complete

    Despite high intelligence, relatively good health & doing all her own personal care since her accident in '08, my paraplegic 24-yo daughter does not deal with bowel /urine accidents. She seems unaware of the problem & is not bothered by piles of clothing/bedding/towels with urine/feces in them, often leaves them for weeks in her room... only cleans it up when confronted by /forced to by other family members. There is urine/feces on her floors, bed, boxspring, toilet, etc. even after she 'cleans'. She leaks urine around the house, in her car, at restaurants, etc., leaves puddles in public & doesn't seem to notice. When she does do her laundry there are often turds left in the washer & dryer.

    I (& other family members) have helped her clean her room /laundry /car dozens of times in the 5 yrs since her accident. I'm a CNA/caregiver (she was too before the accident). I have to point out to her the urine /feces that she doesn't 'see' (or smell) She has not kept herself or her room clean on a consistent basis since the accident. She simply quits doing anything about it, never mentions it, never even acknowledges that she's gone thru all her pads & bedding & is -once again- sleeping on a bare mattress soaked with urine, with a horrible smell coming from her room.

    This is a serious problem that is only getting worse. She is very defensive when the subject is mentioned, will retreat to her room and not come out for days (except after everyone's gone to bed). If any of us come in there to talk to her, or begin to clean, or just offer to help, she reacts with anger & crying, & says 'no, I'm taking care of it'.

    The entire family is at our wit's end. I feel we're enabling her every time we clean up after her or ignore the messes she leaves. Advice, comments, suggestions PLEASE.

    #2
    Was she responsible before her injury?

    When she was injured could she have suffered a brain injury? Sometimes these go undiagnosed and can result in behavior/personality changes.
    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/

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      #3
      Yes she was responsible before her injury at 19, had a regular job, saving money for a move. She had the usual 'teenage angst' with me (her mother) & some hormonal issues (PCOS), then made some poor choices that led to her accident. She did not have any brain damage.

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        #4
        in all my years here I have not seen a post like this.
        No. Id say it isnt normal.
        My daughter was really a pig with her room. Not with bodily stuff, but really didn't seem to care what she left around, It was passive aggression, not giving a shit, and I eventually found out, a heroin addiction. She had a lot of pain to work through before she care about things like her space.
        She is ok now, but see's proffessionals, and chooses to treat her mind. It took several tries, and three years of drug therapy to get her better.
        about all we could do is get her there, and pay the insurance so she had at least some proffessional care available to her.
        She had to do some work though.



        with my urine collecting ex husband, it was simply untreated psychosis.
        It always happened when he was off his meds and at the beginning of mania. I have no idea how he turned out, but well, not caring about the smell, and not even trying to deal with it is not part of recovering from spinal cord injury. it is probably mental illness.
        or passive aggression.

        I learned to deal with bowel and bladder problems here at care cure. Maybe she has given up, but im guessing she is in need some mental health care. and a kick in the butt from others who shit themselves occasionally.

        I sure hope you guys can work this out.
        you can have her admitted for a three day evaluation at a mental health place, but it will absolutely piss her off.

        I think if we did a poll, there would be very few here who would elect to live with their shitty pissy sheets in a corner when there is bleach and a working washing machine in the house.

        Comment


          #5
          I reread your post. this is very close to my bipolar ex husband when he was in need of care. He might have five years between episodes, but as it went into mania his behavior was much as you describe.

          he is very intelligent. a nice person, but this is a chemical thing in his body, and not something he could control.

          the same with my daughter, and her behavior, they are not related but both diagnosed bipolar.

          the worst time for odd behavior was the transition into spring. It got so much worse, and so hatefull. It was usually a short stay in a hopital, and different meds and there would be several years with relatively normal behavior.

          Comment


            #6
            Maybe she has never developed effective bowel and bladder programs and is using a defense mechanism (denial, avoidance) which allows her to bury her anxieties about these issues until family points out the problem triggering a lot of anxiety and latent depression. You may have 2 problems: one is that she has never adequately mastered bowel and bladder issues and may need additional rehab or peer help from someone whose bowel and bladder issues are under better control; second, I think she needs long term counseling to develop more effective coping skills and the ability to confront these issues.

            I was injured (T-10) in 1970 and received over one month of acute care followed by 7 months of inpatient rehab. I feel that newly injured, young people have been cheated out of vital rehab training, counseling, social work assistance and peer exposure of being with other sci injured people as currently young people are rushed through rehab before they can possibly adjust to a devaststing injury.

            Comment


              #7
              Thank you folks for the replies! It's helping me see solutions already. Ancientgimp, your assessment seems right-on & makes the most sense. She did sign up for counseling shen she got on disability this year but the staff are not trained in helping SCIs & they require her to take meds before they will begin seeing her. She's talking about moving to Tucson to be near the only help we've found so far, Mobility Fitness Institute. I'm feeling much better about this whole thing. Again, thank you for reading & responding.

              Comment


                #8
                It took coming to care cure to work out a decent bowel program for myself. the nurses here are great, and the people are learned in their care over the years, in ways the average Dr might not yet know about.
                it helped with my attitude toward moving into the future with an sci.

                what do you mean they require her to be medicated first?

                Comment


                  #9
                  I have to agree with ancientgimp but how sad to be 24 and so depressed that you don't care about your environment. Or appearance.

                  Extreme depression. Does she have any ambition to work or go to school? What happened to her friends?

                  What does she do in her room for days on end?

                  It's unfortunate that medicine has not solved bladder and bowel function. I'm sorry for your situation
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                  Comment


                    #10
                    This is so sad. I really hope she gets some help. She was hurt 5 years ago? Bowel and bladder programs should be fairly routine by now with only occasional accidents. It sounds like she has given up on life. I wish you the best of luck and please keep us posted.

                    Comment


                      #11
                      I would be a little worried about her moving from your family home with the depression not yet dealt with. Did the mental health facility do an assessment? If so, they may have concluded she would not be able to benefit from talk therapy without concurrent medication. Did your daughter refuse meds? Is there a nearby Independent Living Center where she could access peer counseling?

                      Comment


                        #12
                        Why not have her read/post on CC. At 24 years old (or any age really), I would be horrified to live like that.
                        Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

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                          #13
                          I was justin the hospital w/ 2nd degree burns on 20% of my body. Bowels out of control. Shit on bathroom floor. Cleaned it up before I left the room. I can't conceive this level of depression.
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

                          Comment


                            #14
                            I would also have to guess depression figures in and I have to wonder if she thinks this is just her plight in life. Maybe her time as a CNA also feeds into this maybe she took care of people that did not have this all worked out yet maybe she did not realize that this type of thing is not the norm. Has anyone ever asked her how she planned to get a handle on her Bowel and Bladder post SCI? How much if any training did she get? What meds if any does she take in relation to her bladder? Does she have a Bowel program at all? it does not sound like she does. I hate my Bowel program and would love not to have to do it and after twenty years plus still dread BP time but there is no way I would want the alternative. The quality of life properly managed bowel and bladder brings is so much better than what she has now. I think you will have to be more aggressive...You will have to go in there very often to keep it clean, I would not want that sort of thing to build up if I ultimately would end up having to clean it up and when she says she is taking care of it tell her if she was you would not be in there. Tell her you will support her but she has to find a routine that keeps accidents to few and far between and not dealing with it or trying to ignore it is not an option for you and cannot be for her either. If she has a program it is clearly not working. Even with training finding the program Bowel and bladder wise that works for you is a journey and either she never started the journey or she gave up on it before reaching the destination but maybe you can use her desire to move to get her back on track. Maybe if she will start trying to find what works and you help he out when the accidents do happen maybe she can overcome this, well I know she can, I am just trying to figure out a way to get her to where she will. My wife is a CNA/Medication Aide and I do not let her help me if I do have an accident and any clothing involved is cleaned out completely no feces left for someone else to deal with. She may need help getting to this point but I believe she can.

                            Comment


                              #15
                              what if she were to come visit here?
                              could this post be hidden so she would not be embarrassed?

                              has she had any contact with others with sci?

                              is she against taking a mild antidepressant that might help too with neuro pain, like amatryptaline (elevil) or cymbalta?

                              also has she tried any bladder meds or botox?

                              she might even consider getting a colostomy. That sounds drastic and terrible, but here it seems to be a good alternative to bowel and bladder care. there are lots of people here who say, it gave them freedom, and they are happy they did it.

                              I don't think anyone would know it was her at all, and like I said, maybe this post can be removed so she will not be upset.

                              for me, I just read information at first without joining. Im sure this place has made last ten years better.

                              I learned about probiotics, and what to eat and not to eat to have more success with bowel and bladder care..........she could really use some contact with others who figured out how not to poo and pee themselves.


                              have you considered a mattress you can hose off? I sleep on an air mattress, with an egg crate topper and, a hospital fleece cover. those things are easy to replace, and hose off and bleach. for a regular mattress, get the more expensive cloth like cover that covers the whole mattress, and zips closed.

                              easy to wipe off and bleach.

                              I was wondering if you had a top or front loading washer.
                              maybe she did not see the turds if it was a top loading machine.

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