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kbrown - boy, do I hear you. The frustration of it all. I don’t know about you, but nothing wears me out and tests my level of patience like having to clean up a bathrooming mishap.

Rainman was final fully potty trained and wearing regular underwear at age 12. But it sure didn’t last long. Right before he turned 13 he had an accident at school that nearly killed him - twice. Two emergency surgeries and a total of six weeks in the hospital later - Rainman had forgotten/unlearned all his new bathroom skills and we were back to square one. Now at age 26, we’re probably at about 90% but I keep him in Depends cause there’s no predictability to when and where an accident will occur.

My only suggestion is to start again with Trip Training. If you’re not familiar with it - give it a google- most Autism websites have articles about how to do it. It’s the only routine that has even had the slightest success with my guy. And - if nothing else, your daughter will be going on a schedule and that alone should reduce the number of accidents.

I never - ever - say this, but God bless you. Or what ever power of the universe that you put your faith in. It’s tough, tough, tough - what we do. Parents who keep their severely disabled adult-children at home. We, ourselves are getting older and the challenges with our babies don’t get any easier - do they? But loving them the way we do doesn’t leave us any choice.
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kbrown1912 May 2019
Thank you so much. Yes it is really hard and don't always have patience. God bless you.
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kbrown1912...this is more common than many realize. (your daughters diagnosis of early onset)
It is possible that she is forgetting how to use the toilet and to care for herself in a hygienic manner. I will say to what I would say to anyone in this position...you need to take a more proactive role in her toileting.
If you have a "regular" toilet getting a taller one (ADA height) with an elongated bowl might make it easier.
Try getting her to the bathroom every 2 hours. If you have to set a timer to remind her and yourself.
If she is using underwear switch it out to a pull up type incontinence brief. Replace all the underwear in her drawer with the disposable ones. There are some that are pretty if that matters to her.
Good luck you have a long road ahead of you.
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kbrown1912 May 2019
Thank you. Already have that type of toilet. God bless.
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Although you might not think this would help at all, please consider CBD oil.
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kbrown1912 May 2019
How would that help. I would try anything. Thanks.
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Can I ask the nature of the disability and what is her typical functioning level?

I ask as I’m a coming off a particularly bad ten day run.

My son is 26 but due to severe Autism functions at a 2-3 yr old level.

Rainman is “trip trained” for the
most part but still has regular accidents. Usually, wetting accidents or accidents you can tell were from some tummy trouble - that he likely couldn’t help.

However - just this last two weeks he had three poo “accidents” in ten days. Two occurred about five minutes after I had taken him to the bathroom and had him sit for several minutes. That tends to really annoy me - understatement.

When this happens - I have learned over the years that he is expressing some anger or frustration. My job then becomes - figuring out what’s upset him. Rainman is completely nonverbal but has figured out other ways to express himself. I believe it’s a case - in this situation- that he’s controlling what little he is able to control in his life.

As it turned out- all three of Rainmans “companions” wanted schedule changes or days off these last two weeks. I believe he was upset at not being able to rely on his usual schedule and he never knew who would coming to take him out from one day to the next.

So - for me - lesson learned.

Could it be anything like this with your daughter?
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kbrown1912 May 2019
She has developmental handicap. Tourettes. And now early onset dementia. I would say functioning between 3 and 5. This just started 6 months ago. She was trained at age 3 and is now 39. So frustrating and what a mess.
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Awww, poor baby. I know this happens but I later in life. My nephew has a neurological problem that eventually his memory will go.

I would say yes, she probably forgets how to use the toilet. I had Mom hollar for me when she felt she had to go. If I wasn't there she would make a mess.
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You're probably correct, she has likely forgotten or become confused by body signals toilet logistics etc. What exactly are the accidents. Depending on what she's doing or not doing the advice will be different.
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kbrown1912 May 2019
I think she starts in her pad, stands up and goes all over. Thanks.
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Hi,
Have u spoke to her doctor? He might want to check for infection. It may be memory issues or incontinence or maybe not getting buttons, zippers undone in time.? Just trying to help
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kbrown1912 May 2019
Yes her doctor knows. Went to urologist too and no other problems. Thanks.
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