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Mom will empty an entire box of tissue within hours of opening it. She refuses to change her soiled depends, she wraps the soiled areas with toilet paper. Then she refuses to shower. When she does use the toilet, she saves the soiled paper, she folds it neatly into a perfect square and places it into her dresser of under garments.


Why does she do this?

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Was she already OCD about anything? My parents were always tissue 'stuffers' & were mentally competent. My mom wears carpal tunnel splints for her neuropathy & stuffs kleenex in them. She doesn't use them but I find wadded up tissue everywhere. I check pockets before washing clothes. Shredded tissue in the washer/dryer drives me crazy
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Best way to understand this is that she has had a mini-stroke. The area that deals with cleanliness behaviors has been affected. The best way to deal with this is to create simple, consistent routines:
Toilet routine - take her to the bathroom on a consistent schedule every 2-3 hours. Eventually, her body will get used to this routine of voiding and having bowel movements. It might be helpful to get a bidet attachment to the toilet so you can cleanse her bottom without the use of toilet paper. Make it a habit of changing her depends with every bathroom visit. You will have to go with her to make sure this new routine is started and maintained.
Bathing routine - make a daily habit of a shower or bath every day at the same time of the day. Maybe call it time for her "spa treatment" with bubbles, scented lotion afterwards, and even a scented candle. My Gram used to love that I put her towel and clothes in the dryer for about 10 minutes to heat them up beforehand. She also enjoyed that we heated the bathing area up a lot before she bathed. You will have to be with her to start and maintain this routine.
Diversions - Since she is hoarding soiled items, find ways to discourage these behaviors: no going to the bedroom until after soiled items are discarded in garbage, moving garbage receptacle out of bathroom and/or bedroom... Giving her new rituals like washing her hands, massaging in scented lotions, folding linens...
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She does this because she has Dementia, and that's one of the typical behaviors.
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I can tell you stories that would curl you hair. On second thought, maybe not.

Anyway...
An online search on this subject just now brought me to the link immediately below which, funny enough, is an undated article from Aging Care website. It addresses this very concern. Below it is another link from 2012 asking the same question.

https://www.agingcare.com/articles/how-to-handle-hoarding-behaviors-in-dementia-patients-133679.htm

https://www.agingcare.com/questions/senior-with-dementia-obsessed-tissues-154835.htm

I also cut and pasted a question and answer on a subject sadly near an dear to me...
Q. - Why do dementia patients hide faeces?
A. - It is common for people with dementia to do apparently 'odd' things, such as hide wet clothes or wrap faeces in parcels and hide them. This may be because they are embarrassed by what has happened and unable to think of a better way to deal with it.

VERY IMPORTANT - Check every pocket before doing laundry. Washing clothes along with tissues is head banging maddening.

Also start to lock away your jewelry and favorite small objects. Although they have trouble flushing what should be flushed they have no trouble flushing rings, jewelry and money.

Make sure they wash their hands fairly often.

Stay strong.
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VictorianDoll: Sadly, your mother, Joy (you stated her name in your profile) is doing this because she suffers from dementia and her brain is broken. Unfortunately, your mother can no longer live in your home as she requires residence in a managed care facility, most likely memory care. The facility will be able to make sure that she is toileted with an assist and is bathed regularly.
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She's doing this because she has dementia and her brain is damaged. She needs help in the bathroom EACH and every time she goes. She needs to never be alone at home now or to be placed in Memory Care Assisted Living. Oftentimes, caring for a loved one with dementia at home becomes too difficult and placement becomes necessary.

Good luck.
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Are you and your mother living together? Have her evaluated by her doctor and social worker. More information about your mother's situation will help us forum readers. If she lives alone and you are not nearby, it's time to get an APS.
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Please call Adult Protective Services for assist in a crisis placement. Please take videos of what you see. Also, you might want to have her transported to the hospital for a 5150 hold (call 911). It's a hazmat situation, too.

Take care of you.
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That’s a serious problem. It’s not so much a tissue problem as it is a hygiene issue. Clearly a mental faculty has gone awry. Get Dr. invention immediately. Hire a caregiver to help you help her. God bless you with help, patience and sanity woman. Start reading books and dementia/Alzheimer’s disease.
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When my mom had Alzheimer's, she would also take paper towel squares, neatly fold them, and put them in her pocket. I told her I had plenty of paper towels, but of course, reasoning with someone with an Alzheimer's brain was useless. (I had to learn that.) My dog liked it though, because when we got her as a puppy, my mom, with her paper towel filled sweater pockets, was sitting in the back of the car with the pooch and me. Hubby was driving. The pup (Ruby) thought my mom's pocket was a bouncy house, and would gently pounce on it, (with my hand gently assurig her safety). (I had to gently assure my mom's safety too.) I'm glad you posted this, because I thought my mom was the only one who did this. My mom would be hygienic though, so I didn't have to deal with that. Best of luck.
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Dementia made my mom’s behavior quite bizarre as well. She collected paper napkins in her purse. She just felt a need to collect and safely keep them in her purse. Then she moved to colored toothpicks. Had to keep lots of them in her purse. Sigh.
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Interesting, we had to have the septic company out. Workman said tank entrance was "clogged" with a big roll of toilet paper. Lovely woman became obsessed with cleaning herself but kept it to herself (and the septic company). You have never really lived until the septic tank backs up and starts spewing from the toilet!
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PeggySue2020 Sep 2022
Wait, didn’t you say you live at an al? They’re all on septic?
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Maybe switch to those little pocket sized tissue paper holders and just give her one. When it’s gone, it’s gone. Same with the TP. Have one roll with very little on it for her and another you can pull out of a drawer when you need it. Or switch to compostable wet wipes and just leave her one by the toilet.
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It does not matter why she does it as much as it matters that she now needs someone with her for toileting. You or someone you hire.
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My mother in law would take her used Kleenex out of the trash and put in a plastic grocery bag. She would then take our wide roll packing tape and tape it all up into a ball. I discovered this when I needed tape and couldn’t find it. It was hidden in her room.
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No real answer here. Just chiming in. When cleaning out mom's home after moving her to ALF we found drawers and boxes of facial tissue. Bunched up but not really soiled. Just another symptom we hadn't seen.
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You don't say it, but does your Mom have dementia? This kind of illogical behavior and behavior that regresses to childlike behavior is common with dementia. She needs help now with toileting and showering. It's best to have a regular schedule, say 3 times a day to take her to the toilet and showering 2-3 times a week or as needed. Someone should go with her when she goes to the toilet and make sure the Depends goes in the trash and she puts on fresh Depends. For the shower, get her a shower chair and use the spray shower if she has one. If she doesn't have a spray shower you can use a sponge and sponge bathe her in the shower; have a small bucket to dump water for washing her hair. Don't try to teach her not to do what she is doing, just prevent it by being with her and helping her. She may be eligible for some in-home care through Medicare/Medicaid. Get connected with a local social worker to discuss your Mom's options, and yours, if you are currently her primary caregiver. There are programs that pay family caregivers. Have a plan for a time when her care may be too much for you to do alone. She has two basic options, in-home caregivers (family, hired or both), or moving to an assisted living/memory care/skilled nursing facility. Caregivers can help her with dressing, toileting, showering, light housekeeping, etc. If you have caregivers coming to her/your home, lock up the valuables and personal papers. Hopefully all of her paperwork is in order and you are her POA and can take over her financial matters. I found it easiest to set up my Mom's accounts online and do everything online and paperless. While she is still capable of saying things, make sure you are on file with Medicare and Social Security to be able to speak on her behalf. You can do this with a phone call and her sitting next to you. All the best to you both.
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PatsyN Sep 2022
All great advice. Though it makes me flash back to the time I made a special trip to my mom's, trying to get some of their investments switched from my late dad's/ her name to just hers. The company, on the phone, just needed her to tell them her DOB and SS# for ID. (Totally legit.) She couldn't remember her birthday on that particular day. (And didn't know her SS#. Heck I have to take a minute to run through mine when someone asks for last 4 digits.) "Ma'am! Ma'am! No coaching!" when I tried to help. So began a year of BS to get it done...
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My mother did the same thing but only at night. She'd pull Kleenexes out, tap her nose with one, then tuck under her pillow. Every morning there'd be at least 50 of them under the pillow, and when I came along to help clean their house, I probably found 1,000 of them under the bed, too.

The cure for the problem was removing Kleenex from her world. Yes, it was that easy. If she needed one to blow her nose, we gave it to her, but she didn't have a box next to her bed anymore and voila -- problem solved.

I can't help you with the toilet paper, though. That's one of those must-have items.
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Your mother does this because she has dementia. No doubt about it.
Being pre-occupied with their own feces and refusing to wash are classic dementia behaviors.
It's time for her to have help because she's going to become seriously ill from continual exposure to her own crap and saving toilet paper soiled with it.
You have to take over now. She does not get to choose whether or not she wants to shower or wear clean clothes, or change her Depend. You have to force her to. If you have to literally shove her into the bathoom and into the shower or onto the toilet, or into washing up with the basin and soap - Do it.
Let her throw a tantrum. Let her cry. Ignore it because she cannot be allowed to continue living as you say she does.
If you're unable to do this on your own, hire caragivers to help.
Or place her in a managed care facility.
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You mention nothing in ur profile saying Mom has Dementia. This is Dementia behaviour.

For me toileting was the worse job but if i didn' to it mom had stuff all over. Its time for you to be there. You don't ask, you just do. If you think she is going to play with her depends after you have disposed of them, then move whatever u use to put them in. I took the tissue box away from Mom because she was taking the used ones and putting them back in. She got mad at me too. She did not play with toilet paper, but she counted the squares, folding them, until she hit 8 and then tore them off. If Mom is playing with toilet paper put it where she can't reach it because now you will be with her when she goes.

As Dementia worsens people get more like children. You would not let a toddler do what Mom is doing. You would not let a toddler tell u no when their diaper needs changing. Like a toddler you don't ask "do you want to change your diaper". They will probably will say no. Same with someone who is suffering from Dementia. You don't ask. You just walk them to the bathroom and get done what needs to be done.

Sorry, but its time for you to take over the toileting. And this is just the beginning. Mom should never be left alone. She may get beyond the care you can provide so MC or LTC will be needed. Depends on what she can afford.
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It really does not matter the why's of a lot of things when it comes to dementia.
Supervision in the bathroom.
Gentle reminders about where things go.
Prompting when necessary.
Eventually the Supervision will become full care
Eventually the gentle reminders and prompting will not help and you will be doing all the hands on care.
It may actually be at that point.
Showering daily is not a necessity but keeping peri areas clean and dry are. Handwashing is also important.
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Beatty Sep 2022
So well put!
This is the how-to guide in a nutshell everyone needs!
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It's interesting that so many people post about these same behaviours, but although there has been a lot of speculation the "why" remains a mystery - as the decades pass and dementia affects a new generation the belief that it was related to growing up in the great depression or living in a time of outhouses has become less relevant. But the why doesn't really matter, what you need to focus on is dealing with things in the present. Limit her access to tissues and TP. Tougher but also necessary, be aware of and begin to take charge of her toileting and bathing/shower days....

https://www.agingcare.com/topics/95/toileting

https://www.agingcare.com/topics/93/bathing
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CassandraMae Sep 2022
I mean, the "why" is not really a mystery... she is saving and re-using the toilet tissue because she is using it all up quickly then needing it again. Maybe keep a small amount of toilet paper, wet wipes, and paper towels and re-usable wash cloths at hand for when she goes through that. You put rubber gloves and wash it out in the sink or toss them in the washing machine. She is hiding it because anyone with a basic sense of sanitation would stop her from doing this, and she would just run out again. The meds given to seniors keep them "going" or the way their bodies process food keeps them "going." Sometimes they even refuse to hydrate and start refusing food or meds to try and keep the toileting down and end up in the hospital, sometimes it's an economic thing that they can't buy enough incontinence supplies so use paper towels and toilet paper and they're just going going going all day. As a caregiver, I've had clients who had portable toilets next to the bed because they couldn't even make it to the bathroom, and they've spent all day trying to find a position in bed they could lay in without pain, then as soon as they get comfortable, they needed to be helped up to the portable toilet, then back to bed to reposition and try and find the comfortable position, repeat ad nauseum all day. Sometimes you end up putting them in the shower a lot when things get messy, others use lots of toilet paper and wipes or keep a washcloth special for that purpose. All I can say is, enjoy your life while you are physically able lest it one day deteriorate to this, and look forward to advances in medicine and technology to increase quality of life in the elder years!
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I don't understand either why she does this. My mom did something similar at home. She would not wear or keep pads in her underwear so I was constantly washing soiled underwear, pants, sheets and putting protection towels on chairs. She also saved soiled toilet paper and soiled pads. I would find them everywhere and be constantly throwing them away. And try to get her in clean pads and underwear in the morning and after showers. I also found full poops on a couple of times on bathroom counters, floor and the toilet. One time that she had diarrhea it was on walls(!?!), counters, toilet, hands, towels and clothes. I think she just didn't know what to do. We also had incidents when we were out where she lost bladder control in stores -- so if we had a shopping trip -- I started bringing extra underwear, pads and pants. Now that she is in Memory Care she is in adult pull-ups -- they knew she needed them when I did not. I just wanted to share that I saw similar behavior but at the time at home didn't always know how to manage it. I am interested to here if anyone here was able to manage this. Do take care. It's hard for sure.
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CassandraMae Sep 2022
As a caregiver, I've had clients who you just had to stay with them, follow them around talking to them, and if they started to "assume the position" to go anywhere other than the bathroom, you had a portable toilet at hand to just kind of slide under them and get them to sit on. Sometimes they get to a point they really can't be left alone. Sometimes this is a memory issue, other times if they were going to go to the bathroom but someone was in there and they couldn't wait. Sometimes there is a combination memory issue and them not being comfortable needing help in the bathroom until it's almost too late to deal with whatever they need to do. Our instructions were usually to set a cell phone alarm and remind them at least every two hours to use the bathroom which would in theory avoid "emergencies" but in reality they rarely were receptive to going to the toilet on a schedule. I found it pretty helpful to say, "I've got to go to the bathroom soon, do you want to use it first so you don't have to when I'm in there?" If they say no, go in, wash your hands or whatever, then come out and say "I'm done, do you have to go now?" Sometimes just a little extra time to think about it made the "frequent reminders" more effective.
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Has your mom been diagnosed with dementia? This pretty common dementia behavior.

The "reason" is that the person's brain is broken and these action make sense to them.

The best measure you can take would be to restrict her access to these products.
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