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    "Can we talk...?"

    This is not a pleasant matter, but one of my biggest fears of progressing with my M.S. is...smelling of urine. I visited a friend of mine who has had M.S. for years and is now bed-ridden. Despite the fact that she has 2 adult caregivers who live with her AND a visiting nurse, she and her home smelled of urine. Nobody living there noticed it. I am guessing they are used to it.

    My friend wears a catheter, but I swear to you she is so clean in appearance. It's not like she isn't well-cared for, she is! It just doesn't seem like you can absolutely control that odor no matter what.

    Selfishly, I left there feeling pity for myself, wondering if I might one day be in the same boat. Seeing a dignified, proud, and yes, clean woman in this condition really bummed me out. At the same time, I couldn't wait to end my visit and breath some fresh air!

    I think I am probably the only one on this board who thinks about this stuff, but I remember my mother smelling this same way and it brings back horrible memories and new fears. Thanks for listening. I hope I don't sound selfish.
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    #2
    I feel the same way

    I wear incontinence pads and am always afraid I smell too
    They are too expensive to change every time you dribble a bit.
    techie
    Another pirated saying:
    Half of life is if.
    When today is bad, tomorrow is generally a better day.
    Dogs Rule!

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      #3
      No

      When I went to my appointment for my diagnosis, it was myself, my mother and father in the room. I was sitting there nervously awaiting my Dr's arrival. I have an Aunt with MS that has always been a negative Nelly so to speak. Even though she can still do a lot of things, she is very bossy and makes everyone do everything for her. She has always been mean and just not fun to be around.

      When my Dr. came in the room and told me that I have MS, I started crying. I looked at my parents and said I do not want to be like my Aunt. I try my best not to be like that, but some days, I totally understand why she feels the ways she does. I do understand your feeling, but I also know that if your friend's caretakers knew that the house smelled of urine and other people smelled it, they would probably do something to correct it. Sometimes people do not realize it when they live in it and get used to it like you said. I know people who are homebound and have to do the catheter thing as well and their room does not smell that way, so there is a way to prevent and fix this problem. It is a touchy subject to bring up though.
      RRMS 10/2011 Sick and tired of being sick and tired!

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        #4
        My grandfather had a catheter in his last years and he never smelled of urine. This was in the days before incontinence pads. We also had another relative that was B&B incontinent, and not catheterized. The only time I ever smelled urine was when she was in an unclean nursing home after an injury. When she ended up in another nursing home later that was better managed, there was again no trace of a urine smell. And I have a sensitive sense of smell. Things others barely notice knock me over.

        It seems to me that any lingering odor would be from possible spills on the carpeting, bedding or furniture that are much harder to clean or replace.
        It's not fatigue. It's a Superwoman hangover.

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          #5
          Originally posted by lusciousleaves View Post

          It seems to me that any lingering odor would be from possible spills on the carpeting, bedding or furniture that are much harder to clean or replace.
          Money is tight with them, as in many M.S. families, and I doubt they have ever had a professional carpet cleaning. When I housebroke my dog, I had to get rid of my carpet and padding throughout my entire condo. That was when I had a job and could afford that expense!

          It's just a very sad side effect of sick people with little income as a result I guess. I just fear smelling like pee pee myself as a result of the same thing, and that is a very dehumanizing condition in my book.

          I saw my friend progress from hanging on to furniture, to a cane, to a W/C, to a bed in what seemed like minutes. Incidentally, she was diagnosed before people were immediately put on DMDs, but nobody know for sure if that is a coincidence or if they would have helped.

          M.S. still sucks and nothing seems to change in that respect! Nobody deserves to live like this.
          Tawanda
          ___________________________________________
          Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

          Comment


            #6
            Originally posted by lusciousleaves View Post
            It seems to me that any lingering odor would be from possible spills on the carpeting, bedding or furniture that are much harder to clean or replace.
            I can't say I have known too many incontinent patients who don't smell like urine even with good nursing care but what you suggested does make sense because in many cases just washing bedding/clothing with laundry detergent doesn't seem to be enough to get rid of the urine stench.

            Hmmmm maybe we can make a few dollars if we invented Pee-Pee Away laundry detergent.
            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
            Anonymous

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              #7
              Tawanda,

              My mom was incontinent and bedridden for the last 14 months of her life (not MS.) She had round the clock CNAs, and they did an excellent job of attending to her and there was never any urine smell (but these ladies, bless their hearts, were really on top of everything and would change her diaper the minute she got wet.)

              However, before my mom became bedridden and was still able to use the toilet, we noticed a faint smell of urine in the room where she spent the most time, I'm sure from leaks on the furniture, and/or carpet. I can remember my brother-in-law shampooing the carpet, and the odor seemed to become more pronounced. So we used a product called Unbelievable (and it worked.) There are products specifically designed to get urine odor out. I think you can purchase those kinds of products on any medical supply site. i just did a quick amazon search and they have quite a few.

              So IMO, if care is being taken, it's not the person that smells like urine, but the surroundings.

              I believe there are products that work because my FIL was in a nursing home after he had a stroke, and that nursing home never had any odor. And I've visited that nursing home to see other folks, and there never is an odor, so they must have discovered a product that works.

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                #8
                I know the odor. My daughter's mil is home being cared for by Hospice and my dd says their house smells also. They are also very clean people.

                I do not have bladder issues but I do thinik about that also.
                Hopefully that will never happen and if it does someone will be able to help you with a solution.

                JudySz

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