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My mom is 86 and has become obsessed with going to the bathroom every 30 to 60 minutes during the day and night. She lives in assisted living and also has in home caregivers to help her to and from the bathroom or help onto the bedside commode as she has mobility issues and is a fall risk. She does not have a UTI. She has tried various meds for overactive bladder but they did not help. She wears depends and rarely is incontinent. We try to distract her and keep her busy and sometimes that works. She has mild vascular dementia expressed mostly as confusion now and then and possibly this bathroom fixation issue. My concern is that she is not getting enough sleep. While the up and down to the bathroom is hard to be witness the issue i’m most worried about is lack of sleep. What has been your experiences with bathroom fixation and lack of sleep ? Are there medications that can help ? She is on pain meds for back pain and meds for stroke and heart management. I have read previous questions and comments on this topic from years past on the forum but other than patience and commode i didn’t see additional options. Thank you in advance for your thoughts and experiences.

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Your mother is in AL facility, and you also pay for 24/7 caregivers to take her to and from the bathroom all day and night? That must be costing a fortune. I must not be understanding your situation. My parents just moved into AL and I had to also hire private aides to be with them for 7 hours a day as well as I go myself every day, as they didn't get enough help in the AL. The facility aides just briefly come in to help them, then leave them alone for hours, and they need supervision and more one one one help all the time. They were still living at home until Mom age 91 had a stroke and now they need 24/7 care, and adding in overnight private aides is way too costly... although this arrangement is also costing a fortune and I'm worried they will run out of money. But this way they can be in the same small apartment together in AL. Dad age 95 1/2 has Parkinsons plus dementia and is on hospice but he can still walk a little. It's hard work now all day doing his ADLs. But I dread the day he can't get on and off a toilet anymore. Dad was started on 25mg of Trazadone just before going into AL, and it seems to help him sleep better as he was waking us up 4-8 times a night before that. But I'm not sure how he is sleeping really, as the facility doesn't tell me how the nights go. I just know they are both there the next morning, and I pray every night that it will all be ok til then. None of this is easy.
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A pelvic organ prolapse can also be a cause of feeling like you constantly need to urinate. My 85-yo MIL was never treated after a diagnosis years ago; finally got her fitted with a pessary recently. No magical fix yet but it makes sense that the pressure sensation could be similar.
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I am 40 years old and have never really had a bathroom issue. But one of the things I worry about is having to pee. And being stuck with the urge to pee. I don’t like that my bladder feels the tiniest hint of needing to pee. I swear sometimes I feel like I need to pee but it’s only because the thought crossed my mind. So I’ll go pee, and yeah I really didn’t have to pee I was just paranoid about it. This happens on car rides, and especially if I’m trying to sleep at night and if I want to take a nap during the day. I’ll go pee before, then literally 5 minutes later I have to pee again. Sometimes I’ll do this for an hour before my brain just finally forgets all about it. Sometimes I have a full pee, sometimes a few trickles, sometimes nothing because my brain is just paranoid. At night I think I’m subconsciously worried about maybe having an accident. Though it’s never ever happened.
Maybe that’s what’s going on with your mom- she might not like feeling like she has to use the bathroom- maybe a paranoia like me- going to the bathroom because she knows that afterwards there wouldn’t be a reason to feel the urge- if that makes sense at all.
I wonder if maybe at her age, she’s afraid of ever being incontinent and is using the bathroom on a frequent schedule to prevent her from being incontinent. It could be a thing where she feels shame and embarrassment knowing that possibly one day she might be fully incontinent and it’s embarrassing to imagine yourself that way. Having to be dependent someone else take care of her toileting and not being able to do it herself. And I suggest this because literally at my therapy appointment today this topic came up and I realized I have shame thinking of myself going through that. I’ve always kept bathroom matters very private for myself. But for some reason I don’t feel that way about others! Makes no sense! I hope you guys get to the root of the problem because I know exactly what a big issue it is. And because if you figure it out, you can pass what you learn to me- because I have absolutely no idea how to solve this for myself
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JooFroo Jan 13, 2025
For the record- after posting my answer, I really needed to pee!!!! Hahaha ha ha
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My 88-year-old mother with this issue and also sleep issue due to the dementia, had gone through multiple antidepressants and antipsychotics to get her to sleep and finally risperidone with the addition of a small dose of melatonin helps with her sleep. Also starting a low-dose benzodiazepine during the day is helpful with her anxiety and help some with her toileting.
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PattyTS Jan 12, 2025
Thank you for sharing. I’ll learn more about risperidone and benzodiazepine. Does your mom sleep through the night?
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My 88-year-old mother has the same thing. She has a sensation that she always has something stuck in her butt area and needs to go to the bathroom every 30 minutes. She will sit on the commode for multiple hours sometimes. She needs assistance as she has mobility issues.tried multiple things lidocaine ,hemorrhoid creams and behavior modification without success. I have spoken with gastrointestinal physicians, and the most likely cause is pelvic floor dysfunction. There are exercises to do and massage to the area to help. My mom also has dementia. She refuses to do any exercises for this issue as she feels she doesn’t have an issue going to the bathroom. I empathize with you as this is a very debilitating issue. There are physical therapist that specialize in pelvic floor dysfunction and exercises /massage therapy .
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PattyTS Jan 12, 2025
So debilitating you are right. Thank you for sharing. Did your mom have hemorrhoids?
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Many of these antidepressants and sleep aids, make dementia worse and also could make her fall
so you better be careful what you decide to give her
I wonder if it could be boredom, just like my LO who constantly thinks about food until you take her somewhere and then all of a sudden it totally changes
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PattyTS Jan 12, 2025
i think she is definitely bored. She lives in assisted living and has access to activities but is not very interested. And she doesn’t want to go anywhere because she wants to be near her bathroom. I visit regularly but i can’t be the sole entertainment. I agree about the meds. There is no easy answer. She is more confused than ever because of the lack of sleep which isn’t good either.
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PattyTS: I wonder if constipation is the issue since you state that she is on pain medication.
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PattyTS Jan 12, 2025
Fortunately she usually has daily bowel movements thanks to daily cocktail of Benefiber and metamucil. But you are right when she hasn’t had her bowel movement the trips to the bathroom can be every 20 minutes even at night.
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My thought is that your Mom is perseverating about this topic like my Dad did. Dad needed the help of an antidepressant with anti-anxiety components to help him let go of not only this obsession, but the new ones that cropped up as well. It was a game changer. Escitalopram is one such medication. Alleviating her suffering about this will be helpful for all. Anxiety is such a brutal
part of dementias.
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PattyTS Jan 12, 2025
Thank you for the drug information and sharing your experience. It is brutal. All of it.
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As a clinical dietitian in behavioral care for 30 years, the sleep aid utilized for patients was OTC Benadryl. It requires extra fluid intake to prevent dehydration, but was the proven effective manner to facilitate an 8 hour sleep cycle. It makes stools look black. Extra fluid intake needs to be completed by 5PM to not interrupt sleep.
Another food supplement to help urinary tract health was cranberry concentrate with vitamin C 4200mg. In the vitamin section of stores where available.
FYI, Some foods have diuretic effects, which means they can help reduce fluid buildup in the body: They facilitate the kidneys making urine.
Caffeinated tea or coffee, also hibiscus teas
Asparagus
Contains potassium and asparagine, an amino acid that acts as a diuretic. Asparagusic acid, another compound in asparagus, can make your urine smell a little. 
Celery
Contains phthalides, which contribute to its diuretic effect. 
Grapes
Contain a lot of water and potassium, making them an effective diuretic. 
Beets
Contain potassium and magnesium, which are both powerful fluid eliminators. 
Hibiscus
The Roselle species of hibiscus flower has diuretic effects and can help increase kidney filtration. Hibiscus is most commonly consumed as tea. 
Lemons
Contain citric acid, which is a natural diuretic that can help reduce fluid retention and prevent kidney stones. 
Pineapple
Can help reduce water retention in the body, which can make you feel lighter and more comfortable. 
Carrots
Contain a lot of water and vitamin A,
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PattyTS Jan 12, 2025
Thank you very much for these great tips. I will ask her doctor about benadryl. Thank you for be nutrition ideas as well. She can’t have potassium and she takes a diuretic in the am but i can appreciate the natural diuretic options instead of or in addition to.
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PattyTS...I think UTI's are less of a problem with supra pubic catheters than a Foley catheter.
The biggest problem with any catheter is that people with dementia often try to pull at "tubes" catheter, IV's, feeding tubes, Ports etc. for this reason most AL or MC will not accept people with them and the person has to go to a Skilled Nursing facility. I don't know if that would be the case here since your mom has caregivers as well.

Her getting up to go to the bathroom might be less about going then her being used to getting up to go and still feeling like she has a full bladder.
Have the caregivers sit her up for a few minutes before getting up to go to the bathroom. Often changing positions will allow the bladder to be more fully emptied when you do go.
This may also that she is so used to getting up and going this is part of her routine that even with a catheter she may still want to get up and go.

Don't worry about her getting enough sleep...if she is tired she will nap. That is also part of dementia, increased napping.
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PattyTS Jan 12, 2025
Thank you for the info. She takes short naps in the afternoon (in between bathroom trips). but is still so tired. She will tell you she doesn’t have to go but she wants to go just in case and wants to prevent any accidents. (she has never had an accident.. she does wear depends) I think i’m more stressed out about the sleeping issue because my dad stresses as it impacts things he wants to do with her and the caregivers and assisted living facility are very concerned about her lack of sleep. so while i might not stress about it because dementia is a journey I feel the external pressure to “do something. ”
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We started my MIL on 10 mg. melatonin and now she rarely wakes to toilet more than once a night.
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PattyTS Jan 12, 2025
Unfortunately Melatonin did not work for her. She still didn’t sleep and it also seem to increase her hallucinations (maybe a coincidence?)
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Thank you so much @alvadeer, @funkygrandma59, @lealonnie1 for your great advice and sharing. Very helpful to me.
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Having to pee all the time is very common with folks with dementia, especially vascular dementia.
My late husband who had vascular dementia was going to the bathroom to pee every hour on the hour day and night, and because he was a fall risk I would get up with him over night which meant that neither of us were getting any sleep.
After many sleepless months and my husband trying all the active bladder medications that didn't help, his urologist finally recommended that my husband get a supra pubic catheter, which he did, and we were once again able to sleep all night long and I only had to empty his catheter bag once in the morning and once in the evening.
It was a godsend for sure.
Might be worth talking to your moms urologist about that.
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PattyTS Jan 8, 2025
I am so glad to hear a catheter solution made life easier for your husband and caregiving. My mom tried the Purewick external catheter which did work great, but she would forget it was on and created quite a mess when she would get up without help. Did your husband deal with UTI's once his catheter was in place?
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With dementia at play, which is likely far more than mild at this point, OCD sets in big time as it has with your mother and the toilet obsession. My mother was similar, but only during the daytime. She was also in Memory Care Assisted Living where she'd automatically get help with toileting and no additional help needed to be hired.

Meds are definitely in order here! Mom took Ativan and max dose Wellbutrin for depression which kept her a lot more balanced than she would've been w/o them. A must have for elders with OCD issues and dementia in my experience. And once a stroke happens, more strokes and TIAs are likely to occur, causing more and more issues with worseni g dementia as time goes on.

Best of lucking addressing these issues as they arise.
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PattyTS Jan 8, 2025
Thank you for your insights. Her doctor just recommended (today) a low dose of Ativan and I will keep my fingers crossed it works well for my mom too. I will learn more about Wellbutrin. Memory care AL is a wonderful option should in-home care givers become too costly overtime. Thank you for sharing your experience.
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There are really only two things you can do here.
The first is a very good consultation (and I would have a gerontologist recommendation here) for a very good Urologist used to dealing with issues of aging.
Something is going on here. It's either in the brain, the gut or the bladder.
So you are stuck finding out which. The gut and bladder will be the easiest issue with "Mom, are you going to urinate is do you have to poop?" You need to know what she THINKS needs to be addressed in the bathroom.
Once you have ruled out things you may be down to it being the brain.

There isn't a lot you can do about brain issues, and when people have an obsessive behavior hit, it will either run its course or be permanent.
Once you are sure there is NO medication that will work to calm the bladder, and there are no issues of constipation making her continually think she has to go but can't you will try with the brain issue. Some gerontologists are having some luck with mild and low dose anti-depressant for some reason, tho admittedly this isn't an issue of depression.

When obsessive behavior involves gut or the bladder it is somewhat a crucible. Our earliest memories, fears, punishments, rewards, all seem to have formed around toilet training.
The embarrassment throughout our lives regarding fear of "accidents" keep these memories cemented in our consciousness in a way that--when our aging dementias set in--happens easily.

If someone were to ask me what is the most common obsession for elders in the throes of dementia I would say two. #1. is "stuff". Our things. Our acquisitions, possessions, valuables, money. Paranoia over fear of loss of them and loss of control of them is horrible for the demented mind. #2. Always is around toilet issues.
Woe to the family dealing with BOTH at once.

I sure wish you good luck. I sure hope you'll update us if you go on this mystery tour.
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PattyTS Jan 8, 2025
Thank you so much for your insights. It all makes good sense. Mom has had a thorough GI and urology workup. All systems working normally. I do believe all her OCD behavior stems from the fear of accidents as she often verbalizes that she has to get to the bathroom before an accident occurs. Even if we gently let he know she went 15 minutes ago, she has such urgency to get to the bathroom just in case. Her PCP just ordered her a low dose of Ativan. Fingers crossed that helps. Regardless, this behavior appears to be the "norm" for common obsessions. I already delt with stuff (it's all around her and not going anywhere) and the bathroom fixation is not new to me as I have experienced it with other elders in my family but this time it's reached new heights affecting sleep which affects everything that much more. Thanks again for sharing.
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