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My mom, recently diagnosed with dementia and ALZ, has had fecal incontenence for a couple of years now (apparently not as uncommon as one would think...). She's finally at the point where she's willing to do a colonoscopy which will be done next month, thankfully. However, she's started rolling her pads up in toilet paper and hiding them in drawers and at least once into a plastic shopping bag and stuffing it under her bed. I found that one because she was missing an item and I pulled out all of the junk she had under the bed looking for it. With the way her room smells, I think she might have done that again. Anyway, how do I handle this? I never know from one moment to the next how she will react to things, but often she acts like a privileged 12 year old girl. Do I insist on checking her room for used pads?


The other thing is that I just walked, barefooted, into her room and for the second time in 2 weeks the runner she has in front of her dresser is wet. Last time it was human pee - she insisted it was one of the dogs, but I know the difference. She wears flats even indoors so she wouldn't even notice it. I guess I need to call her doctor about this now?

Kirah, yogurt isn't enough if you have a problem, it's not strong enough and the dairy could be part of the problem. It creates a lot of mucus in our bodies.

Such a catch 22. I would go to Swanson vitamins and order some reasonably priced probiotics and see if that helps. We use the dr. Lancers 16 strain, for years and have great results. It also helps my dad a tremendous amount.

I hope you find a solution. Inconsistent is such a challenge.
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Does she take any probiotics? I would get her started on one and see if that helps a bit. Gut health is so vital for overall health and so ignored by the medical field.
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MountainMoose Mar 23, 2019
Yes! With a healthy diet and yogurt every morning, my mom was very regular.
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I had that problem with Mom. I learned the hard way too! Like when I gave Mom a sweet potato as part of her meal. It's good and good for you, lots and lots of wonderful fiber...until I found it on the floor.

Mom was a beautiful dignified soul. She would never mention she'd had an accident and I treated her with dignity with all this. She would have been mortified if I had pointed it out to her.

I tried to watch her like a hawk, like: ensure she had her Depends on or if they appeared like they'd been replaced--so I could track down where the old one was; check her bed when I got Mom to the toilet for the day; put a sheet over her new chair "to keep your new chair brand-new looking!" with a chux under the sheet; every time she was on the toilet I would check her Depends for cleanliness. Anything more than a drop it got replaced.

Even so, she'd still surprise me and I'd find toilet paper in the weirdest places.

Great choice for the doc to say no to the colonoscopy!
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kirahfaye Mar 23, 2019
My mom is still about 75% cognitive and 85% ambulatory so she can and does do a lot on her own, and tries to do more than she should. That's part of the problem.... ha. She is still set for the MRI this Weds and we have an appt with her gastroenterologist in a little over a week to go over those results and see what, if any, options we have.

Also, I realized yesterday that when my mom had her two cataract surgeries back in January she was also under anesthesia and called her eye surgeon's office. They were in a difference office so the assistant will call me Monday to let me know what type so I can tell her doctors. That was before she was officially diagnosed with dementia.
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Current Update - both my mom's MD and neurologist has said no to the colonoscopy. Thank you all so much for the head's up. The surgery wasn't the original question (I'd still like some ideas on that), but the concerns you all raised could have alleviated a serious problem. I'm going to call the gastroenterologist today and see where we can go from here.
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First, sorry - I should have mentioned that my mom is 84 (85 in October). My stepdad passed 8 years ago and she was living alone up until Aug 2017 when she got the first foreclosure notice on the house. She swore she was keeping her finances together, but I found out that was not at all the case. Anyway, she told me about the fecal incontinence as we were packing her up to move in with us. She hadn't said a word to her previous doctor, but then considering what I discovered about her medications once she was up here with us, I don't know that I would have trusted him to treat her.

I'm going to call her doctor tomorrow and ask what she thinks about the colonoscopy. I understand why the specialist wants her to have one (even after I advised him she had dementia). He's concerned it might be colon cancer. Otherwise he said he normally wouldn't suggest it. But I will see what the MD and maybe even her neurologist thinks about it. If it's cancer, well my mom has a pretty severe LW. She doesn't want to be kept alive, period; just made comfortable and as pain free as possible.
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Your Mom may have just been diagnoised but that doesn't mean she wasn't suffering from Dementia before. If she is living alone she probably shouldn't be. You don't say how old she is but I would not put her thru a colonoscopy. Like said the prep is not great. Then its going under. Not good for someone with Dementia. I would have her do the little box thing first. If blood is found, then make a colonoscopy decision.
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Grandma puts used TP between the bed pad and her sheets. It's not by accident. She coherently explains that it's still good on one side. Why waste it?
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JoAnn29 Mar 20, 2019
Lol, sorry just hit me right.
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I too question the colonoscopy - unless there is a strong family history of bowel cancer or there is a reason to believe her incontinence is somehow related to bowel disease I would not recommend going ahead with it.

As for hiding her used products, unfortunately it is not uncommon for people with dementia to develop weird behaviours around toileting, if you think about it hiding the evidence actually is kind of logical, peeing/pooping in buckets or closets, smearing feces, refusing to take off soiled garments or to shower are just some of the things people on the forum post about. It is going to be up to you to monitor her in much the same way you would a newly potty trained child - for many caregivers this is the tipping point when they make the decision to move the person they are caring for into a facility.
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This is really difficult.

So, your mother has been managing her own continence products up until recently; but now, since the dementia diagnosis, she's obviously beginning to struggle but still thinks she "ought" to be coping and doesn't want to talk about it?

Certainly, I don't see how it can hurt to talk to her doctor; especially if there's been a change in her toileting habits. But even better might be to get the right kind of specialist nurse involved - experienced continence care nurses are brilliant at cutting through any shame or embarrassment and finding helpful answers to people's problems.

Rather than searching her room for pads, I should keep track of her stash so that you can count them out and count them in again (into the trash, ideally!). Then if one or two go a.w.o.l. you'll know to go looking.
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kirahfaye, one thing I am questioning is why a doctor would have your mother go through a colonoscopy with her having dementia at that stage? It's tough enough of a procedure for us who don't have dementia.

What I worry about is the prep work that is required the day before, such as no eating and drinking a lot of specialized fluid that isn't all that tasty. If your Mom refuses to do that, then the colonoscopy would need to be cancelled immediately.

And even if Mom does go through the colonoscopy and something questionable is found, that would later require surgery. Surgery and dementia are a terrible mix as going under for surgery tends to worsen the dementia.

Lot to think about here.
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