For those who care for someone with Parkinson's disease
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This morning I awoke to the pungent smell of fresh feces. There is no mistaking that aroma and it woke me up better than an alarm clock! I found my husband on the toilet, feces all over his feet and between his toes, as well as on his hands, and everywhere he touched. Fecal smears were everywhere, counter, cabinet, tub, toilet, wall, it was unreal. His pile of feces was on the bathroom floor, stepped on and smeared around. He had tried to close the bathroom door but the pile was too tall so he smeared feces all under the bottom of the door as well as up the bottom front of it when he pulled the door over the pile. It was something. I have to say, I was very calm when I discovered this. It was like I was watching myself from above, and I just silently got gloves and boots on, and began cleaning up after I helped my husband into the shower. I cleaned everything up as well as I could (I don't think the rest of the family will ever go into that bathroom again), got my husband showered and clean, and then informed him that I was removing all of his underwear from his dresser and replacing it with pads and depends. I told him that he no longer had a choice to help me help keep him at home. I've hidden his bag of underwear and boxers in the garage in the hopes that there will be a cure in time for us to need them again, but in the meantime, he will have no undergarment option but the pads. I don't know if this will help anyone else, but thought I'd mention it in case some other caregiver is struggling with issues like this. I'm sad it has come to this, and sad that I have to be the meanie, but nothing else I've tried has helped. Hopefully this will. |
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Again, have you gotten him to a PD professional or a mental health professional? If he has no physical control, he needs more care than you can provide. I would rely on the advice of professionals. Without a competent, unbiased review of the facts and a complete physical, it would be difficult to find the appropriate solution. The solution may not be what either of you want, but it is well past time to NOT be pro-active for your mental healh, the health of your family, and most assuredly, HIS health. Remember, he has an illness, BUT he deserves dignity...even if it means gettting the outside help neither of you are ready to accept. |
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Oh dear lurking, the depends are not going to keep his feces from falling on the floor. As soon as he pulls them down to sit on the toilet they will most likely fall out. I know this from the few times my hubby had an accident and went in his depends and as "I" pulled them down the feces fell out. I think he will still make this awful mess when he sees the feces on the floor, or in the depends. There seems to be a need for him to smear the feces which is not normal. Depends will solve the issue of urine on the floor as the pads/depends hold a lot of urine. I hope you can get professional help soon. The health of your family is important. |
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| Lurking so sorry that this situation persists. I think you seemed to be calm during the clean up because this has become your new normal. Please don't let this happen. The time has come to stop trying to apply logic to a situation that your husband has NO control over and neither do you. Professional help is needed to determine if his medicine is to blame. RX side effects caused horrible changes in my husbands behavior. It got to the point that I thought I was going crazy! Finally got help to determine if mental or PD related. My husband does not even remember a lot about that time period. You cannot make this better. |
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Dear Lurking, This is a terrible situation you are all living with. Someone mentioned that about your dh smearing the feces not being normal. My dearest Mom when in the early stages of Alzheimers used to put her hand in the loo and smear the feces all around the bowl. We think the reason was that, she remembered that it had to be disposed somehow and had forgotten how to use the flush mechanism. We learned to wait outside the door and intercept her before it happened. At this stage, she was still highly functioning in other ways. Perhaps your hubbie is still trying in his own way to dispose/hide the mess as he knows he should and his brain is unable to join the dots... How is his executive function overall? Either way it is a sad part of this terrible illness. |
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Lurking again - something occurred to me on reading your most recent post. You posted earlier that you found your husband squatting over a bucket with feces smeared everywhere and a mess because he hadn't used the bucket. In this instance he was sitting on the toilet -- could it be that he is not so much not trying to use the facilities as making misquided efforts to do so? Or to supply a substitute of his own (the bucket)? Not mentally able to fully accomplish everything, he misses and makes messes. And not being able to clearly think out the process of cleaning it up, he doesn't so much make a deliberate mess as get it on his hands and smear it. Maybe he's attempting to keep himself from defecating until he reaches the toilet\bucket by using his hands much the same as a child will "hold" himself when he has to pee? The incontinence in such a case might not be so much deliberate as TOTALLY something he can't control and there may be serious physical reasons for his lack of control. You definitely need, for his sake as well as yours, to have it investigated. My own PWP had a toilet accident at school at a very young age. All through the disease there was a terrible fear of incontinence to the extent that we visited every bathroom multiple times everywhere we went. Beds were changed frequently because the PWP was sure there had been bedwetting accidents. Kind of the opposite issue you are having but just as annoying when it increased the workload at home and required multiple visits at inopportune times to every public and private bathroom and I ended up feeling it was deliberate even though I knew it wasn't. It wasn't until meds were evaluated we found that the multiple anti depressive meds were causing an increase in confusion and effeting thinking abilities. The issues slowed and was more tolerate after meds were adjusted. |
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| Lurking....your story was my story last week. And I accused the dog of dropping the logs and hubby of stepping in them. Nope he owned up to it and said the harder he tried to clean it up, the worse it got. And then he cried. He was so sorry and hated hearing me gag, and gag, and gag while (donned in gloves & boots too) sanitized the little bath. Now he says he will use the handicapped bath where I can use the shower spray on the walls, floor, toilet and it all goes into the floor, and then I can spray bleach on all and flush with water a 2nd time. But he cried. It was not his fault. He had on pullups, and just could not get them down fast enough and BAM. Oh poop....let's hope it is the last time for both of us. |
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I really believe my husband was trying to get to the toilet but could not get there fast enough and out it came, probably as he was walking to the toilet since it was just a few feet away. Then he tried to sit down holding onto the counter, wall, toilet itself, and that is where the smears occurred. No way would my normally tidy husband want to deliberately be in such a situation. He just could not make it in time, which I understand totally, but believe depends would have helped at least contain things to when he got to the toilet and pulled them down. The mess would have been contained to a much smaller area at least. We have had no med changes so I can't blame it on that. I think it is just progression which is so scary. |