Dementia and toileting: Any suggestions?

I see some good responses posted.

I would never allow a loved one to go an entire day without going to the bathroom, let alone several days.

For my mother with Lewy Body Dementia, I utilize a calendar-style dry erase board for documenting hydration and hygiene. We developed a legend that we use along with the time of day. For example, '2-832' means that mom had a bowel movement at 8:32am.

Mom wears diapers as a safeguard but we call them "underwear" because the word 'diaper' is not helpful at all with making her feel better about her declining health. If we had to change her underwear (diaper) we would write 'UC' on the board for underwear change.

All of the part-time helpers, myself, and anyone who helps has to look at the board and assess when was the last #1 & #2. We also assess how much fluid she is drinking and what time the last fluid was given.

Every 3 hours we tell mom "it's time to go in the bathroom to see if anything will come out." Then we escort mom into the bathroom even though most times she will say "I don't have to go to the bathroom yet." We simply respond by saying "it's been 3 hours so let's just try because something might come out when you sit on the toilet." After mom is on the toilet, we turn the lights out (she likes the light out when on the toilet because she believes someone tries to watch her through the pipes) but we leave the fan on for noise. Every time it never fails, she urinates or does #2, but she just doesn't know she needs to, so it became pointless to ask her if she need to go to the bathroom. You can ask all you want and she'll say no.

In a nutshell, the signals from the brain to/from body parts is not working properly so you have to help your loved one along.

Why is your mother on Lactulose???? That laxative is normally prescribed for people with advanced liver disease and can be VERY hard to tolerate! Any time a person is taking powerful laxatives for extended periods of time and NOT having bowel movements, that is considered to be an emergency situation. Same goes for a person not urinating at all, which is what you are saying about your mother.

You need to contact her doctor right away to discuss the fact that she's not urinating or having BMs. That is a very dangerous situation going on and not something a forum of caregivers on the internet is equipped to help you with.

Advanced dementia and a situation such as this may be something out of the realm of your capabilities to handle (or any ordinary layman for that matter). It sounds like she may need to be seen in the ER.

Good luck.

I know all too well that people can go many days between bowel movements but lactulose is a powerful laxative, is there nothing at all or is the amount just very small? I found out the nurses counted every brown stain as a movement. Lactulose also draws fluid into the bowel so maybe that could be contributing to a lower amount of urine? But if she is taking in enough fluids then I don't think it is humanly possible to go days without peeing, I would be suspicious she is either going on her own and you are missing it, perhaps she is going in inappropriate places or she is going when in the bath or shower. If she feels the need but can't go has she been checked for a UTI or might there be some other reason she can't go like a prolapse?

How mobile is she? How closely is she monitored? How long do you leave her on the toilet, and do you stay with her or leave her alone? Is she wearing a pullup?

My Mum is a little similar,.. she does go,.. in her depends/incontinence pants and in the toilet BUT she doesn’t associate pee as urine!

In her mind, someone is putting water in her pants! I always know when she talks about rain/flood that she’s actually referring to pee!

Ie she’ll get out of bed and say “water is getting in my room again”. I’ll sigh and say,.. Mum you have a roof and it’s not raining outside and then take her to toilet for a change.

If I ask her if she needs to pee, she will often not understand the concept and say no she doesn’t have those things. So I just take her routinely and sure enough she goes.
On the actual toilet she will also sometimes announce “what is this” and she will sometimes sit and get straight back up and I’ll say “you haven’t done anything yet, give it a little time”. She also almost always gets pee on the bathroom floor either by not sitting fast enough or when getting up too early.

Shes gotta be going somewhere if she’s drinking enough fluids! Does she wear incontinence wear? Otherwise something seriously wrong if no pee. I would be careful about giving something that was prescribed for someone else for the stools. Surely there are more natural mild alternatives. As some suggested laxatives do absorb moisture. Feeling ill could actually be feeling ill because the bladder isn’t working,.. I’d get it checked out. My late brother once couldn’t really pee and had to have a catheter put in as somehow his badder was holding on to the urine. His bladder had swelled extremely and he was also feeling ill. He was in hospital for that. So if no pee,.. I’d take that seriously!

This is not unusual. My mother with advanced dementia also didn't recognize when it was time to go to the bathroom. As mentioned in previous responses, use adult diapers and there are also disposable pads for incontinence that you can put under her in bed and on seats. In my mother's memory care facility, as long as she was able to do the transfer (walking at first, then from the wheel chair to the toilet), the aides took her to the bathroom three times a day to try to go to the bathroom. Maybe keep it up as a habit, but don't make an issue with her if nothing happens. People with dementia go through stages. This may pass. All the best to both of you!

I can only speak from my experience with mom 86 with dementia. If she's really drinking plenty and not peeing then sounds like a serious medical problem. If she's actually peeing and you dont see any evidence then as others have said she may be peeing in unexpected places like trash can, pile of laundry, in closet, behind a chair, or outside. Or peeing in her pants and putting wet pants in trash. My mom did all this and more. Or she might not be drinking as much as you think. My mom would routinely take a sip then pour her cup of water/coffee/juice/soda down the drain when I wasn't looking. I hope your mom is ok. Do get her doctor's opinion.

I don't have your issue yet but you may have luck from a prank I heard that guys in the Army would do to get their sleeping buddies to pee.
When it's time to pee have your mom sit on the toilet and put her hand in a small bucket of warm water and tell her to close her eyes and relax.
Or try turning on the sink faucet, not at full force, just pleasantly so she hears the sound. You might tell her to close her eyes and think about a beautiful gentle water fall. Kiss her on the head and say, isn't it a lovely water fall.

I hope it works.

Took care of my father inlaw with dementia and he had the same problem so we put a daiper on him and no problem. Sometimes you just have to let them do what they want cause as they say we cant force them. It just her mind and she is at a stage where they know what they do is bad but, they still think they can carry on in their mind. I have a mother inlaw and she thinks nothing is wrong with her mind and just carries on doing the things she wants. We just let them do it and leave them to fend for themselves until they ask for help. Its like raising a child again. I use to fight with them but, hey what the hell. Let them go and let them do what they want. One day we will go through the same thing as them..

Lynneh: Your mother needs to be seen by her physician right away and possibly even specialists such as a urologist and a gastroenterologist. Regular use of laxatives, especially in elders such as your mother, is not recommended. What must be determined immediately is why your mother is not having bowel movements or urinating. This is an emergent issue and not something that an online forum is medically designed to handle.

My husband will sit on the toilet and go but not realize he had to or that he did go. I will ask him if he needs to go and he says no but goes. I have him now full time in mens underwear. The brain is damaged and the brain is not sending the signal. I ask my husband if he is hungry and he says no but will eat everything I give him. For now ..