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When she is on the toilet for hours she can't stand up. I have to lift her and assist her to the sink to wash her hands. I am concerned she is damaging the nerves in her legs. She is not aware of how long she has been there. We have tried monitoring her and in the evening putting her to bed. But she gets up during the night and we find her on the toilet when we get up. Then, she is still there for hours and insists she needs to be there. We have put a timer in the bathroom, but she turns it off and when we go in she doesn't understand why the timer was there. We explain why but she doesn't believe us. The only success I have had is flushing the toilet, waiting 10 minutes, then telling her she hasn't gone (after checking the bowl) and she needs to get off the toilet. I then start cleaning her up and then we lift her off the toilet because her legs are weak. This is not healthy for her and I am very concerned. Any ideas on what to do?

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Have you had her checked for hemorrhoids? She could have an internal one that feels like she still need to go. I went through this with Luz (DW)
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My sister was diagnosed with Alzheimers at age 55. One of her early obsessions was with the toilet. She was ok when she was sat on it but as soon as she was taken off she repeatedly said she needed to go and got very upset. Even when she was taken out all she wanted was the toilet. It went on for quite a while but then stopped and went on to tummy pain but there was nothing wrong with her. Have you tried incontinence pants or pads to make her feel more secure. Hopefully this phase will pass. Try a Twiddle Mitt for her anxiety or distract her with music she likes or photos. Good luck. X
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truthbetold Jun 2020
She’s not lying . This happens when stool is in the rectum creating signals to the brain to go. But the muscles lost their pushing power OR the stool is bottlenecking and keeps piling into the rectum getting wider and thicker until it can’t pass through the small rectum hole. Either soften stool with a baby enema or ask dr for gentle remedy or get educated on how the rectum works to pass stool and peristalsis motility etc . Usually if stool begins to get larger and larger, it can’t pass if it starts to dry up.
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I recall learning that when our parents were young, there was a fixation with toileting every day at regular intervals to remain healthy. It was a health craze that their parents bought into. This might help explain why those with dementia fixate on toileting if they are reliving their younger years. But also it might be something they feel they can still control, except with poor memory, they forget if they have toileted enough to be healthy.
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Why is she even on the toilet? Couldn't the issue be solved if she wore a protective pad/diaper/Depends undergarment?
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This makes me think of more than one lady at the nursing home who would constantly ask to be taken to the washroom, if you didn't know any better you would have thought that the staff was incredibly heartless and incompetent.

I think that you need some kind of floor mat alarm of motion sensor that alerts you when she is up at night so that you can intervene, I think that you are correct that spending hours on the toilet could be harmful, especially if she is straining (or worse). I don't think that locking the bathroom door is going to do anything except cause her even more agitation when she can't get in, instead work with her doctor to try to treat the sundowning anxiety and help her sleep through the night.
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I would sedate her at night and put a diaper on her. Maybe she needs to be on some kind of
medication for compulsive behavior. Talk to her doctor because you can’t keep up this kind of life. I can only imagine that her legs would be very numb from sitting that long on the toliet.
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Please have her checked for a UTI, which can make her have the urge to go frequently. She may also benefit estrogen cream to her female parts.

After that, she will need to benefit from scheduled toileting - every 3-4 hours - with lots of other activities to divert her attention.
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Redirection--…. Normally at an Assisted Living Facility-- two caregivers are supposed to help someone use the bathroom. Doesn't always happen but they do not mess around because they are infinitely needed elsewhere. If she is in such terrible shape that's probably where she needs to be. You can get here there by telling her she won a free weekend visit. I just lost my mother who was 88. She took 20 years to leave us. I am just now recovering from the stress. It gave me Meniere's Disease. Tomorrow I go in for an ultrasound test to see if I have a blood clot in my left leg. One should punish one's self just because one is related to a person who is in such bad shape. But my sisters and I did.
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gemswinner12 May 2020
DugganB,
You are a Saint for seeing after your Mother’s detailed needs for So Long!! I have to admit that it’s been a few years since my mother passed away in Memory Care, and I do think of some fond memories of her, but I’m mostly relieved. Her life was sucking the life out of me.
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My mother was the same way. He bladder was dropping out which made her think she was going. Every day, her bladder needed to be push back up into her vagina. You might want to check this out.
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I would find some way to put a diaper on him. Another thing is to consider locking the bathroom or standing by so you can time the person. Then tell the patient someone else has to use the toilet. If they can't get up by themselves, that is bad and I think it is time to go into a facility. You should not have to lift someone who can't or won't get up - what will happen to you. This is not a good fit - this person needs to be in a supervised facility. And put some kind of a bell or device that makes noise during the night if the patient gets up and leaves the bed. This is terrible - you cannot put up with this any longer.
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That's that's a horrible situation to be in I know, my dad does it also he uses the bathroom and 10 minutes later he's forgotten he's used it and he thinks he's constipated, he can go two times in a day and swear up and down he's constipated, he wears himself out going back and forth to the restroom all day long , and he also sits there for long periods of time by the time he's through he's so weak he can't get up so my prayers are with you and if you find out what to do please let me know God bless
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truthbetold Jun 2020
My dad did that last month for the first time. Guess what . He was constipated. He kept going to the toilet and not having any success passing stool. Please give him some Vitality CALM about 1/4 tsp to start and an enema while laying down to soften the hardening stool that’s bottlenecking the exit. But he can get a heart attack if the CALM is too effective and the stool is too packed or got too wide waiting in the rectum to pass . It has to be softened first . Ask the doctor what’s the most gentle way to get the stool out because your dad is right . He feels the sensation to go but it’s not coming out for whatever reasons . Lack of balanced electrolytes usually .
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have you checked for a UTI?
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Put pull-ups on her or a diaper if she loses her ability to walk. She probably can’t get up from toilet herself so she just sits there. Hugs 🤗
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Have you asked her doctor about it?
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My 96 year old mother got to the point where she needed help toileting. She resisted at first, but eventually her dementia got to a point where she accepts it. She is in a senior memory care residence. She also was getting up at night, but started to have falls as she was getting out of bed. We got a hospital bed for her with bars that pull up so that she can't get out of bed on her own. Hospice or Medicare paid for it. She is in a senior residence.
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My mom who lives with us is 95 and she too has a fixation about the bathroom. She uses depends, does not have a uti, she just has this fixation about the bathroom all day and all night. She can return to bed or chair and fall asleep briefly (2-5 minutes) and wake up thinking she needs to go. Yet we can take her somewhere and she can go several hours and not even ask to go. It is exhausting for her and us. Nothing has worked to stop this. It is just a fixation we have to deal with.
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This may be an obsession, in which case she'll move to a different one in time, or it may be a physical health issue which needs addressed. My only input here is to be careful about locking doors. My mom went through the obsession about locking the door: bedroom AND bathroom. Of course, no way to explain in her poor broken brain state the dangers of locking herself in. We just reversed the doorknobs so they now lock on the outside. She moved on quickly from that obsession and we rest easy that she won't fall in either room and the door be locked against our getting in to help her.
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Could be UTI, retention, constipation, some other medical issue - or - could be her current fixation. Sort of like the brain messages that she needs to go are in a loop. This fixation may pass & then she becomes incontinent.

Until then, yes locking the bathroom door & try distracting onto another activity if she has just been.

The flushing toilet working makes me think her brain's stuck & the noise 'unsticks' her. Getting mentally stuck happens. Try big visual clues to move forward. "All finished now!!" Flush. Taps running to wash hands. Use a bright coloured hand towel to get her attention. Now it's time to ....
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Once medical causes (UTI, anal dysfunction, etc etc) have been ruled out by her doctor, consider locking the bathroom door when you're not there but providing a bedside commode that is adjusted to a lower height that doesn't cut off her lower limb circulation. I put a baby monitor in my mom's room so I could tell when she was moving about. As time progressed, I set up another baby monitor in reverse (yes, I'm talking about two baby monitors - - much easier than walkie talkies, where buttons have to be pushed), so that I could speak to her without getting up. Saved my sanity, I can tell you, and a little bit of my ability to sleep. When you are caretaking 24/7, you begin to sleep with one ear open, so to speak.
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Sounds like the toilet is comfortable. Is it the most cozy chair in the house for her? What is it about her other chairs that she doesn’t like? As others have mentioned, she may be afraid to soil or wet herself. Adult depends or pull-ups , or start out with trying lady period pads; my great aunt would always have my Dad buy these for her. He was baffled; I could see it in his face. She probably thought that asking for a menstrual product was less embarrassing than incontinence products? Even though she was well into her 60’s, maybe she didn’t realize that my Dad probably knew a bit more about periods than she thought.
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She may be retaining urine and that's why she feels she is not done. Urine retention can occur as a result of a medical condition, or as a side effect of medication. There are drugs that reduce or eliminate urine retention.

She also may have urinary tract infection. That can result in feeling like you need to go when you don't. It can result in frequency of urination. It can result in changes in cognition and physical function. Please discuss these and have these checked out with her doctor.
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Is it that she thinks she has to pee or poop? If pee, get her checked by her doctor. A UTI or other bladder condition can lead to feeling the bladder is not empty.

If poop, she may have rectal prolapse, which again should be checked by her doctor. It can feel like pressure near the anus and you cannot completely empty the rectum.

once she has been checked by her doctor, or while you are waiting for an appointment, put a door chime on the bathroom door. This way you will be woken up and can attend to Mum in a timely manner.
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When the brain is broken, all kinds of odd things happen. She's not going to understand any explanations or timers, etc. Maybe something to distract her? Like, OK, it's time to wash your hands now. Or time to do whatever, just something to try to get her up and moving in a much shorter period of time.

If she's not incontinent, I don't know if I would go the depends route. If she still knows she needs to use the toilet, it may be very difficult to get her to just go in her depend.
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I would have a hard time getting up after hours on the toilet! You should see me get out of bed in the morning. I like the Depends suggestion. I hope you aren't trading one issue for another - she has to keep them ON! Good luck to you.
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You may have to lock the bathroom door and get your mother into Depends for the future. At night, you can purchase an anti-strip suit and get her into a Depends brief as well. Spending hours on the toilet is obviously not a good idea. And trying to explain to her why it's not a good idea isn't going to work. Dementia prevents rational thinking and no matter what you do or say, you won't be able to get through to her. If the toilet is her current fixation, remove the object of her obsession by dressing her in disposable briefs and telling her the toilet is broken. If you don't take an action like this, chances are good she'll fall off the toilet during on of these long visits and you'll find her on the floor with a broken hip or femur.

Good luck!
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momof2angels Jul 2020
My mother had dementia for years and also had severe mobility issues due to aging and rheumatoid arthritis. I just can't imagine putting her in an anti-strip suit, even at night, as there were many times when she needed to go to the bathroom during the night or early morning hours and getting it on and off or even pulling it down would have been an issue. She would also spend long periods of time in the bathroom on the toilet and resist efforts to tell her that she had been on there for long periods of time and needed to get off the toilet. Not sure what else you can do with that issue, as even having her doctor speak to her about it didn't help, because she wouldn't remember the conversation later on. I just think the anti-strip suit would be an additional problem. At least, it would have been, for us.
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