My 89-year-old mother-in-law is reusing dirty toilet paper and saving it. What could this behavior mean?

This isn’t uncommon. Yes of course get her checked for a uti, but the real question is why are you there?

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.

"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"

Sick how? So if she isn't allowing outside help in, who's doing all the caregiving? I hope it's not you!

Why did you move in with her?

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.

"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?

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.

I walked into a client's house once and the first thing I saw was continence pads hanging over the radiators to dry. Good thing I was wearing a mask - 1. the obvious; 2. so the client's husband didn't see the expression on my face.

His reasoning was that they were very expensive, and it was wasteful to throw them away if they were only wet or "it's only a little bit" soiled [OHMYGOD!!!!!].

It took us weeks as a team, led by one of our more forceful Assessment Officers, to persuade him of the extreme unwisdom of so unhygienic a practice. And there was no question of neglect: his wife, despite the "mystery" of her recurring UTIs and skin breakdown issues, was even more headstrong and tight-fisted than he was.

Back to MIL - how big is the box? What happens about cleaning her bathroom, does she (claim to) do it herself? - just wondering if there will be other opportunities to raise the subject naturally, without causing offence. Also just wondering - did she get caught up in the Great Worldwide TP Famine at the beginning of Covid?

I hope to goodness she is washing her hands after all this. Any evidence of whether she is or not?

"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.

Why are you living with her ?

Take a photo of that stash and take it in to the the doctor to ask if it constitutes normal behavior. My mothers primary care doctor refused to change the order of constipation meds for my 99 yr old mother’s explosive liquid diarrhea. Nurse said “you have to bring her in” So I went to memory unit in morning cleaned her up, arranged transport and took her in to the docs tiny, unventilated exam room. Myself and two nurses struggled to get her into a position for the “exam”. Removed her then soiled pull-up and attempted to get her on to the table while holding a clean pull-up. Unable to get her onto the table, we opted for her bending over the table. Doc came in with a look of absolute horror. He visibly shuddered, put gloves on, bent down and “assessed the situation”.

IMHO, you always need proof. In your case, a photo just might be enough.

Are you living with her?
If so why?
If not then you could report this to APS as self neglect.
they will follow up.
If you or other family members are not listed on her medical paperwork then the doctor can not legally discuss her diagnosis with you or anyone else.
You say she is a hoarder.
You give this one instance of reusing soiled TP and think dementia. Are there any other things she does or does not do that might make you think she has dementia? There are plenty of lists on line that you can review giving "clues, signs" of dementia. But again not everyone follows the typical signs.
If you are living with her you might want to discuss with your husband that you should be looking for a place of your own.
If MIL needs care then caregivers can be hired.
If she does not want anyone in then unfortunately like many others you wait for something to happen that will force her to accept the help that she needs. This might happen after a hospital then rehab stay.

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.

A doctor can suspect they have dementia but should recommend a neurologist with his suspicion. The neurologist should them do an mri to see the brain and that will be the telltale if she has any deterioration of the brain and cause.

Aah yup,.. sounds very similar to what my mum with dementia was doing couple years ago. Couple of years ago she was still switched on enough to try hide this behaviour / be embarrassed.

I would find used toilet paper in the bathroom drawers (I went through them coz I could smell urine despite the bathroom being clean). I don’t think she was re-using them but somehow they would end up in the drawers. I tried to get her a bin with lid next to the toilet so she’d put them there instead. It worked mostly but I did notice couple of times, she’d look for toilet paper from there. I’d have to remind her that anything in there was dirty!
Around same time she was also getting less tidy in general. She’s always been house full of art/crafts but now it was getting very unorganized. She also refused outside help to come clean but wasn’t interested in doing it herself either. So to me that sounds very familiar.

Couple years on now, I monitor her bathroom visits apart from if she gets up herself in the middle of the night. I’ve actually removed toilet paper from her bathroom. Instead I hand (allocate) her toilet paper when I’m assisting her and wet wipes. This is because she was leaving the toilet paper in her pants and then it would end up on the floor, shower, etc. naturally the toilet paper would break down in her depends and as she’d go to change or go to toilet, we’d end up with urine soaked toilet paper crumbs all over! I figured it really doesn’t matter if she doesn’t wipe when she pee’s on her own because she has incontinence anyhow and she never does no2’s middle of night. At day time, I’m there to watch and allocate TP.

oh and now she’s no longer against help,.. as in her dementia has progressed in that she doesn’t feel embarasssed anymore. Unfortunately, it’s useless as we Live together and thus, they would only clean her room (despite the fact she uses other rooms too and that I could really do with any help/break from being carer in general). They also would not carry a vacuum downstairs where her room/bathroom are so what’s the point. May as well do it myself, sigh despite being exhausted. It’s funny how by living together, it makes it my responsibility. I’m not asking them to clean my room or organize my things but there’s meant to be all this help/ support for carers and this is the kind of stuff that would really help. I work full time from home and care for mum full time, I’m not receiving any benefit to caring for her. Yet, it’s all my responsibility coz we live together.

As has been stated, you need to be listed on her HIPPA statement at any doctor's office for them to speak with you. They are protecting themselves from lawsuits. Until she is declared incompetent she is the one who will have to give written permission for you or anyone else to be privy to her medical information. You and at least one other person should be on the HIPPA and it would not help to get the VIDs (very important documents) Updated will, Medical Proxy and DPoA in order also.

I am assuming, but could be wrong that both you and your husband live with MIL in her home. How long have you been there and why did you move in with her? Who provides transportation to her medical appts (that could be a quick bargaining tool on getting the HIPPA signed)?
Living a true hoarder is just about impossible and usually has a negative affect on everyone's mental and physical well being. Is it possible for you to move out? Once she is alone you can call Adult Protective Services (APS) to check on an elderly person in a dangerous situation.

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.

i would have to leave

Hoarding is not just about bringing stuff in, it also has to do with saving things that should be tossed out - like used toilet paper. If you watch the hoarding show on TV you will find that people save a lot of disgusting things: urine, spoiled food, even poop. Most of these people are embarrassed enough not to let other people inside. Many have not had visitors, even immediate family, for many years.

You might start with cleaning out areas that you both share. Talk to her again about the tp issue and let her know the filth is going to create bugs and rodent issues. Also, if she gets sick enough and requires in-home care, the attendants may report the filth to adult protective which can result in everyone having to move out of the house due to unhealthy and hazardous conditions. All of you are breathing the nastiness of the house. Don't ask about cleaning an area out, just do it and refuse to engage with her if she gets angry.

This is your mother in law, so what does hubby say about this sort of thing. Was she a semi or full blown hoarder while he was growing up? Possibly not full blown. Hoarders tend to have someone during their life that curtails the activity, however if that person dies or leaves, it then becomes what you see now. Does hubby or other maternal relatives display any kind of hoarding tendencies? Could be a generational problem.

You might ask her doctor about the possibility of a psychology visit in or outside the home. Sometimes bringing someone in will get the person past the embarrassment stage and to talk about why they do this sort of thing. Like an intervention.

Your MIL very likely has some form of mental illness and almost certainly has dementia.
You need to move out as soon as possible. Contact your state's social services and ask to speak to a social worker. Tell them what the living conditions are and ask them to come out and do an assessment.
Very likely your MIL will be declared incompetent and will be placed in the appropriate care facility for her needs.

To me, this is a Health Dept thing. Its unsanitary and me, I would be going into her bathroom and flushing them. It does not matter if she is a hoarder or has Dementia. We had a woman in my town that had her water shut off. By law when that happens the person cannot live in the house. She was taken out of the home and what they found was filthy conditions. She hoarded toilet paper and put it in her tub. There was no way she could bathe.

I would call the Health Dept.

72 hour psych eval? Call Adult Protective Services and request an unannounced visit.

Your mother-in-law is mentally ill, regardless of whether it is depression, dementia or something else. Her doctor is doing no one any favors other than your mother-in-law. However, how does a doctor determine that someone is living in less than sanitary conditions unless he does a home visit or smells the filth on her? In addition, your mother-in-law probably knows what to say to him to get the decision she wants.

Can you talk to the police or fire department to see what they suggest on how to get help? You definitely should NOT be in that situation. People who are in that situation generally know that it is bad, but they think it is not THAT bad or they think that they can handle it on their own. If this has been going on for awhile without consequences, then they think it is okay and life continues on.

I suggest caution in the use of the word "hoarder". When the word is used, people think of feeces, dead insects, rotting food, things piled to the ceiling, etc. It automatically makes people feel guilty and invokes a defensive response. You don't want a defensive response. You want her to accept help from others.

Perhaps you are living in a place that is similar to those you see on TV, or perhaps you think you are close. I would get an objective opinion like from a policeman or a fireman. However, the used toilet tissue? Yes, that is a health hazard and some kind of action needs to be taken.

P.S. This is your husband's mother. What is his position on the family environment and situation? He might to forced to take "sides" if this situation escalates.

Tknox123: Your MIL apparently suffers from mental illness.

I agree, she is mentally ill.

This calls to mind a lady on the show "Hoarders" who did roughly the same thing, though she was using the bathroom in a cup in front of her granddaughter.

Even when she stayed with her daughter with a working toilet, she still defecated on the floor in the bathroom by the toilet.



Lost my other username.

There comes a time that someone is no longer independent with their toileting. Regardless of cause (mobility, dementia, brain injury, behaviour, mental illness) - if they cannot adequately clean up to appropriate social standards, they will need supervision &/or assistance.

I visit someone who has some problems in this dept, mainly due to mobility (but other factors like lack of insight may be present too).

Usually, things go well but occasionally things don't.. area & person not adequately clean, sometimes odours etc.
If I find the frequency is increasing, it will be time to take action & make some calls.

If this was in my home, & I had not signed up for this level of care, I would be looking for placement now.

When my mom was about that age she was still living alone and ended up in the hospital with a severe UTI. I discovered she had been using large stacks of Kleenex as pads for incontinence and drying them out and reusing. Possibly being from the Depression era she was trying to be thrifty.. She was beginning to show some dementia so ended up with a companion/housekeeper for her.

You need to get a second opinion and bring her yourself to be evaluated. My mom is 89 and has Alzheimer’s. Her dr referred her to be evaluated. The dr was as old as her and only did a few little things and said she was fine. I got a 2nd opinion with a correct diagnosis. Alzheimer’s doesn’t improve. Please get her help any way you can.

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!

Thank you for posting this question! My MIL shows similar behavior. I’m so happy I’m not alone!

I was reading olblondi's post and had a chuckle. Do you think this kind if hoarding comes from being raised during the Depression and WWII when it was "waste not, want not". Its drummed into you at a young age so a very longterm memory.