I am so please to have connected with a group of people who know what PSP looks & feels like. much gratitude.
My mum has PSP it has its ups and downs im struggling at the moment only surviving hoping to trive hence the 'triving' to remind me what i want to do.
Mum is recently out of hospital after another fall backwards and stiches in head. appears more confused settling back into home.
The issue is bowel incontinence. it appears more her technique of cleaning her bum. Ive been cleaning fecal smeared knickers for some time. However now im finding pooh bits on floor or on the face washer she has wiped her hands on and not soap washed them. other things I can deal with. this I am struggling with and dont know what to do.
I would be most grareful for advice and shared stories from others that may have had this experience and is it PSP or another dementia issue.
Many thanks.
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Thriving
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Hello.. sorry about your mom's condition. All that you have described closely resembles what my dad was doing prior to his terrible fall that resulted in hip fracture & diagnosis of PSP. I do not have any great ideas as we were wondering what to do with his inability to comprehend and forgetfulness that was giving rise to what he was inadvertently doing. and sorry to say that this is only likely to get worse.
My dad cannot do things for himself now, nothing at all as he cannot move any limb other than his right hand - if he was mobile, he would be continuing to do what he was doing. I can only suggest PSP-proofing her room - keep things that she may damage out of her reach (say in this case, keep the handwash close and facewash farther) and using diapers etc when the carer cannot keep a close watch. dont have a better suggestion really, which I hate.
My husband cannot wipe his bum without falling over. I try and get him to call me so I can wipe him but he finds this embarrassing. I sympathise but have no real answers. X
It is a crap disease isnt it pardon the pun. yes it would be embarrassing for our loved ones....it reminds me of the decline of the illness. I think that is what has rattled me at the moment. Reading the responses reminds me to not look that far ahead..baby steps. Much gratitude
Hi, I'd say welcome to the site but that means you and your loved ones are suffering like the rest of us. It got to a stage where I realised my mum was struggling wiping herself, that was about two years ago. As she became more rigid with the psp she was unable to reach round far enuf. Unfortunately she is now at the stage where she cannot walk, talk, is on specially puréed food and is really struggling to swallow. This is one cruel disease and all I can say is don't be a stranger to this site as the support and knowledge these dear people give are what keeps me going. Good luck dear one.
Wow I dont know if I feel better or worse. ..I am grateful for everyone's kind words and sharing..it is all a reality check of this hideous disease...I am truely sorry to hear of other peoples suffering. this site is a blessing....xx
My dad is at the stage now where he is in a care home.
Everything has to be done for him. At the moment my dad has been complaining of being constipated and in pain.
Before my dad went into a care home, we had carers coming in three times a day. The morning girls would sit my dad onto the toilet and then wipe his bottom for him. It became a routine.
Hi Thriving. It is an inevitable problem that carers get involved in the 'crappier' side of caring! Not nice for either party.
No-one so far has suggested a wash and dry toilet. Would imagine they are expensive but have seen them in our local Life Unlimited shop. I gather they can warm wash and air dry the bottom after the business, so that would remove some of the messy problems. No doubt it could take the user a while to get used to the process, especially if the mind is having difficulty with the normal process.
System may only work for a while too. Would not cope with the messier 'woopsies' I had to deal with!
Sadly, it is something that the carer has to get used to, if they can! And then clean up everywhere else too.
Certainly not something any of us expected to do after the babies have grown up and away!
Maybe, in your mum's case, frequent check of bathroom situation and daily flannel change and hand wash routine after. Get carer to check as part of her job too. Bit like checking up on the newly potty trained child - but not the same I know!
And am sorry, it is not likely to improve, so get tips from your carer for future.
You need to be there with her to make sure she washes up correct, also have mentioned many times to avoid head injuries get her a helmet believe me it will help a lot . Nettie
Get baby wipes for cleaning up after a bowel movement. Once she finishes with toilet tissue, have her use the disposable wipes to finish cleaning up. Don't have wash cloths where she can access them. Hope this helps, and God bless you for taking good care of your Mom.
Only problem with baby wipes in NZ is they tend to clog up the sewage pipe if flushed. Don't know if same in Oz and elsewhere, but you may have to teach her not to flush them!
Hi Thriving and welcome to this site. You'll find realistic and practical advice here from caregivers who have seen it all, done it all and from many who are still doing it. Toileting is not a taboo subject as far as caregivers go... keep asking questions until you find something that works for you and your mom. However, remember for your mother it's an embarrassing matter. Loss of independence is tantamount to a death sentence with each loss equalling another nail in the coffin. Visual reminders and list can be very helpful... in the bathroom, kitchen etc. I'm pretty lost without my lists and reminders and have come to rely on them daily. Flushable wipes are a good idea, but they can be a problem for the plumbing if you use too many... they are definitely not septic friendly. If you go that route, consider a diaper pail with a lid. There is also a product on the market called a "Diaper Genie"... same idea as the pail but it's more inconspicuous. Hope you find a solution for your mom and you.
My dad has already passed but there was a certain amount of time that I thought one of the toilets that will wash and dry you would have helped. I have heard of elderly or injured people finding these helpful. The trouble with psp is that everything is always changing and it's hard to keep up. Right when you think of something that would have been useful then they are at a different stage. My dad needed the urinal constantly and that was used by just standing him up. Bowel movements were less frequent and he did use a portable commode. When he was done he would stand with his walker and have help with cleaning. A large area to do this is needed. But the new toilets would be more private and dignified.
Hi Thriving. Welcome and comiserations. My husband's bowel incontinence is my principal problem. Even worse than yours if thats any consolation. His mobility is very poor which means that he often can't make the toilet in time but I also get the impression that his sensation is reduced too so that he is less aware of impending disaster.
Fortunately embarrassment is less of an issue as he is a retired doctor and pretty immune to bodily functions. He has dementia and often forgot to wipe himself in early days but can't do so effectively any more so I have done this for him for some months now. I keep rubber gloves, nappy bags and wipes by the toilets and we have both accepted the situation. (We can't flush wipes here so they go in a nappy bag).
But by far the worst is the frequent incontinence. This is so much more socially unacceptable than urinary incontinence. Even if he does only a little in his clothes the smell is a give-away. I carry an emergency rucksack now with all necessary cleaning equipment and a change of clothes.
I would welcome any input from other readers about suitable pants for faecal incontinence.
I'll finish by sharing with you the difficulty this problem has presented in our current position of trying to sell the house (We need a bungalow now as the stairs present a danger). There was one occasion which resembled a stage farce. We had people looking round the house and while they were in the garden we had to go to the toilet. I could see them heading back to the house so I left Jon to head them off. Suggested the agent showed them the outbuildings next, went back in to find Jon wandering round with his pants and trousers round his ankles looking for me. Just managed to clean him up (fortunately all in the toilet this time) and freshen the toilet, spray air freshener around and was helping him back to his chair when they all came back in. Whew! Funny in retrospect but not at the time.
Seriously though this is a huge social problem and means that I can't accept friend's offers of sitting with him so it's very restrictive.
To return to your situation I wouldn't advise a special toilet. They're very expensive and your Mum would have to learn how to use it and remember to do so. I'm afraid it's down to ditching the embarrassment and getting on with it. Good luck with that.
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