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I’ve been living with my elderly mother-in-law for a few years and have begun noticing some strange behaviors. She doesn’t have a diagnosis of dementia but we suspect she is in beginning stages. We contacted her doctor who brought her in but never contacted any family to discuss and told her she’s fine. The doctor was of zero help despite telling her about this tp behavior. She does a great job perking up when necessary. She is a hoarder and a narcissist so she is extremely difficult to live with. She let her house go which has caused me to become very sick. We had hoped she would realize she needs the outside help during this time but she still refuses to allow someone into the house and I feel she is embarrassed. My primary concern is the dirty toilet paper she’s hoarding and hiding it in a box under the sink of her bathroom. I asked her about them and she became enraged and told me never to go into her bathroom. She never explained what it was but I saw her with the door open reaching in for her dirty tp, wipe and then put it back. I can’t find anything like this online, only typical hoarding of tissue but not the reusing of it in such a unsanitary way. Help!

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Also, this level of behavior is NOT 'the beginning stages' of dementia, not by a longshot. It's moderate to advanced at the least.

Acting all fine and well when others are around esp doctors, is known as Showtiming. They perk up and put on the Ritz, then go back to raging lunatics the moment the visitor leaves and the door closes shut.

Get RID of the disgusting toilet paper and if mother has a melt down, oh well. Hoarding used TP is a bacteria-fest and an illness waiting to happen for all of you. Go into her bathroom every day and empty the trash bag lined waste can.

You cannot make a demented person or a mentally ill person 'understand' anything, which is why they're mentally ill or demented. Their brains are broken. Stop trying to talk sense into someone who has no power to reason left in her brain.

People with dementia reach a point where they need help toileting, period. They need help wiping, cleaning up, flushing, etc. Otherwise, they have dirty behinds, use rolls of TP at one time requiring you to call a plumber all the time, and on and on. You can buy a man all the he-man wipes on Earth, ain't gonna change a thing: he needs to be wiped by a caregiver, a wife or whomever.

Your mother's doctor likely never gave her a cognizance test like a MoCA or SLUMS test, yet tells you she's 'fine' which makes one wonder what his definition of 'fine' is and/or what mental state HE himself is in? Time for a new PCP for mother, one that's under 100 himself and not stricken with cognitive decline so that he can recognize it in others. You can even take her to a Neurologist, but the testing is a bit more strenuous, generally.

Put your foot down at home re: the used TP; mom does not have to agree with your new rules, she just has to abide by them, ie: you are helping her with bathroom duties now AND emptying out the TP bins daily. If she doesn't like it and has a few too many hissy fits over the new rules, she can go live in a nursing home or a Memory Care ALF which may be required at some point (sooner or later) ANYWAY. You'd just need to move the process along a bit quicker if she refuses to agree to the new rules of keeping the household healthy.

GOOD LUCK!
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Cappuccino42 May 2022
Yes I was going to say it’s definitely not the beginning stage....
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In some countries, TP is used and re-used. Sounds gross to us, but if the sewer systems are basically open rivers..you don't flush the Tp, you throw it in the trash when it's used up. I learned this from my son who lived in Btazil for 2 years.

Now, if mom is in the US, this does speak to some kind of hoarding behavior along with some level of cognitive decline. Think about it: reusing old TP..bad enough if it's just urine, but resuing Tp that has cleaned up a BM...disgusting, unhealthy and unnecessary to boot.

These aren't 'beginning' stages, she is pretty well established in the disease if this seems OK by her. Please get her checked for a UTI, first, then face this problem head on.

You can get a different dr, you know. If this one seems unconcerned about this weird habit, you should find one who looks at the whole picture and can dx dementia. The behaviors are all over the place--and what you describe is just one of hundreds.

Do you live with her? Couldn't get that from your post.
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This isn’t uncommon. Yes of course get her checked for a uti, but the real question is why are you there?
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Tknox123 May 2022
The pandemic put us here and we’ve been struggling to move ever since. We are hoping to move by this summer and have been trying to get her the help she needs before we leave but that seems impossible at this point.
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This is frank psychotic behavior, not hoarding. Her psychosis may be a part of dementia. Forget about looking for psychological labels, she is well beyond that. You don't need a test when the symptoms are so obvious.
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BurntCaregiver May 2022
The OP needs a social worker to help get the MIL placed in the appropriate care facility.
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This is not at all unusual behavior for a hoarder in the more severe stages. Many of them hoard dirty diapers full of feces and are not at all bothered by encrusted toilets that haven't flushed their feces for years. If you do a bit of research on hoarding you will note this, and even watching Hoarders or "Buried Alive" episodes will show you that this is not unusual.
If you are POA then there is the possibility of telling your Mom's MD you need a good neuro-psyc workup. However, do know that you are likely looking at hoarding and the outrage that is common when it is addressed.
I think you may need to reassess living with a Hoarder. I cannot myself imagine it going well for you. I am so sorry you are dealing with this. I wish you well.
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"but she still refuses to allow someone into the house"

Yes she may refuse outside help to clean up. This does not mean family must clean up instead.

This is self-neglect. Report your observations to her Doctor. She may need substantial mental health support. For starters.

It is a fine line. Respecting a person's wishes to live how they please at one end - to taking away a person 's rights at the other.

But when a home becomes a bio hazzard, effecting other occupants or fire hazzard effecting neighbouring properties - it has crossed definately crossed the line.

Find yourself a safer living arrangement asap. A small rented apartment nearby. Check up on her by phone or in person frequently. Advice her Doctor she needs substantial help & contact APS too. Advise MIL to call her Doctor when in trouble. The first fall, dehydration or unusual behaviour, arrange her withdrawal to ER, for a full medical workup.
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She may have an untreated UTI or some other medical issue, but at 89 she most likely does have dementia. There is no definitive test for it in the early stages, except eliminating any other medical issues, like UTI, dehydration, vitamin deficiency, diabetes, high blood pressure, brain tumor, etc.

If she went to the doctor by herself, she may not remember what her test result was, or she's choosing not to tell you. If you're not her designated Medical Representative (a HIPAA privacy thing) then her doctor *can't* reveal this info to you without her permission and being present during the discussion.

For you own sake, move out and let APS deal with her -- especially if you're not her DPoA. It would probably help if you consulted with a therapist who works with hoarders. This person could give you tactics in how to engage with your mom, if she's able to, but dementia makes it more challenging, if not impossible.
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"We contacted her doctor who brought her in but never contacted any family to discuss and told her she’s fine."

Did the Doctor tell YOU that she's fine or did they tell your MIL? Because for the longest time my FIL was going to the doctor on his own and everything was "just fine" and then we started going with him and the truth came out. We made sure that we were all on his HIPAA and that they could talk to and in front of all of us (SIL, BIL, DH and myself) and that one of us is with him at ALL of his doctor's appts now. That was made much easier by the fact that he is a two person transport everywhere he goes, but we made it a condition of the transport - if you want to go- one of us is going in with you. I guess it never crossed his mind that he could say no, which is surprising. So maybe he was more unsure than we realized. Or maybe he just liked the attention - because he too is a true narcissist. He also does this thing where he will use a tissue and save it for later. He hasn't done the toilet paper thing, but he will definitely do it with used tissues and paper towels. We keep telling him he is spreading germs and there are several drawers in his room we will NOT open without gloves on and several surfaces in his room that we refuse to even touch (his keyboard, mouse, anything on his desk, his cell phone, house phone - without wiping them down because his hygiene has gone down hill and he is well aware of it.

If the doctor only told HER, maybe you need to do a little more investigating and see if you can get more information?
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Funny thing this post. I've had the pleasure of enjoying this relatively new and escalating challenge.

It started about a year ago with the squirreling away, in corners of bedrooms, tightly squeezed little spit balls, then various sized balled-up tissues, and an odd sock occasionally. With time I found stashes of scrunched up tissues inside closets under and behind stored extra blankets.

That continues. Additionally with time came strips of 6- 10 clean squares of TP that were neatly and tightly rolled and tucked into draws and cabinets. Cardboard tubes from the center of TP are also hidden. They are folded as small as possible and tucked inside the space between the vanity and the wall in that opening where plumbing comes from.

And now the pièce de résistance, tissue with poop carefully placed in the vanity, behind towers of toilet paper, bottles of lotion and large refill bottles of hand soap. Need I say more?

I asked him, "what's this sh*t?" No, I didn't, but I did ask - what's going on, and showed him, and he is honestly clueless on having done that. He is angry with me for suggesting he is the blame for this discovery, and he is super sincere when he says that the other people, (there are no other people), must be doing that.

As an aside, he also tells me he's not holding things in his hands that he is in fact holding.

Sadly it's another stage. Months ago there were clues that something-this-way-was-acomin' in this department when while helping him to wash he showed evidence that he no longer wiped his butt after a bowel movement.

One of my efforts to deal that was to leave out a package of butt wipes and to remind him to use them after using TP. And to make it, I had hoped, more appealing I purchase Dude Wipes that are in a manly black package.

Ah me. The best I can do currently is to stay by the closed door of the bathroom and gently remind him about each clean up step. The knobs of our vanities doors are now tie-wrapped to prevent access but he still managed to slip into the teeny tiny space around that little cabinet's door the flattened, center cardboard, from a roll of TP.
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Thank you for posting this question! My MIL shows similar behavior. I’m so happy I’m not alone!
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Beatty May 2022
Love your name 😁
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