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During the holidays we were traveling to NC to visit family. On our way down, at the very first rest stop, my mom (mid stage ALZ) all of a sudden forgot how to use the toilet. She didn't know how to sit down, she would just stand there and instead bend over and hang her head. I tried to help her but she resisted. I had to literally push her down to get on the toilet. She became, and still becomes upset when I have to do this. She had this trouble the whole time while in NC. We got back home after a week and it's still the same. There are times where she just goes with no problem, but it's not often.


I show her pictures of someone on the toilet, I demonstrate sitting on the toilet and a chair to simulate the act of squatting down. Nothing. I am not sure if this a new permanent thing we now have to tackle but I want to try my best to get her back to the way she was.


She will now be limited on how long she can go out with friends (a very active social life), since people will not want to push her down and feel like they are hurting her. I know I need to stay on top of it and just keep trying but if anyone has any advice or was in a similar situation please let me know.

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Your post reminded me of a Teepa Snow video
https://www.youtube.com/watch?v=WRC3WLSQSq8
I know she is talking about Lewy Body dementia but the advice to try to use autonomic memory to help her get "unstuck" might apply
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deedle7769 Jan 2019
Thank you for sending this!
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Like willie says, she is stuck. Maybe it has to do with going to the bathroom as a child, you were afraid you'd fall in. My Mom wouldn't bend her legs when trying to put her in a wheelchair. She'd get mad when you insisted she bend them. I believe as the Dementia progresses, they go back in time losing the memories from before. My Mom became like a child to the point that her actions and face expressions were like a childs. Someone said something to her about her daughter. You should have seen her face, "I don't have a daughter" She had two. I think in her mind she was not married. She never mentioned my Dad or my one brother.

Sometimes there is no "going back". Her friends have helped her toilet. God love them. Was the one thing I hated the most. Not sure if I could even do it for a friend.

Hoping the video helps.
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I always say that if the elderly with dementia did not have to toilet, they'd have NO problems at all! The toilet becomes the biggest problem on earth for them. I watched my father suffer tremendously with the act of toileting, requiring 2 people to assist him, falling down off the toilet in the middle of the night, etc etc. I'm now watching my 92 y/o mother struggle with toileting in basically the same way. She is 100% incontinent, sometimes bowel incontinent as well, and has more issues with the toilet than with ANY other thing in her life. It's really sad and I hate to see all the suffering.

I'm sorry I have no wisdom to share with you about your mom forgetting how to sit on the toilet. I'm not surprised to hear about it, however, and expect my mother to have similar issues one of these days soon. God help & bless us all.
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Have you tried telling her to bend her knees instead of just sit down? This is a trick I use when trying to get my Mom to stand up to transfer. It might help her sit down as well.
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deedle7769 Jan 2019
I tried this last night and it seemed to work! I had to encourage her to keep going lower and lower until her butt hit the seat, but she did it. I gave her praise for completing the act. I will incorporate this going forward, thank you for the advice.
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DW has the same problem at times. I think it may be related to fear of falling. Similar to the fear of going from one type of floor covering to another. That was just to enter the bathroom. She will yell and resist with all of her might. I hate to do it but I will force the issue since no amount of talking helps. Other times she goes all by herself, leaving the clean up to me.
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qmnpxl Mar 2019
Your post sprung me to more action than you might suppose. My PSW has the same problem. I have used your same technique: a combination of wheedling, cajolery and brute force. I began to see her depth perception is way off and the change of flooring from hallway carpet to bathroom vinyl presented a problem. Was the problem. 

I put down 2 scatter rugs with identical patterns; one in the hall and the other in the bathroom so they butted together. This helped by eliminating the transition from carpet to vinyl. Next I started leading her by both hands walking backward in front of her so she could see my feet about where she would step on those rugs. This eased the problem maybe 90%. Been doing this for roughly 3 weeks. Strangely the transition from the scatter rug to the vinyl is no sweat.

So what I had thought was resistance to entering the thrown room was really a depth perception problem.
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A dear friend of mine was unable to fully bend her knees due to injury. She bought a taller toilet seat, about 6" high, that screwed onto the toilet just like a regular seat. She barely needed to bend her knees to get her bottom on the seat. She had no fear of losing her balance & just collapsing if her knees gave out. You may be able to find something similar at a durable medical supply store. Best of luck to you!!!
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My mother had a raised toilet seat with armrests, but she never had dementia, so knowing how to use it wasn't a problem. I am more worried about myself--I am agile enough so far (although I wonder why the movie theater toilet seats seem made for 5 year olds!), but I have colitis and often have to go "right now", especially in early morning hours. If I develop dementia things may really get messy!
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In addition to higher toilet seat, do you have grab bars for her? There are bars that fit right on toilet with adjustable width. That allows her to use her arms to guide herself down and up so less fear of falling.
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With my father, we have to break it down into small steps. Instead of pivot or turn around, we say 1)move right leg back (pause) and move left leg forward (pause). (Patting leg to move and praising). He just forgets how to get there. Lots of patience.
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Look for Teepa Snow clips on YouTube regarding how to walk a patient so that they feel comfortable and confident with you.

Take your mom to the bathroom, try to make her turn so that her back of the knees touch the toilet. Then hug her and tell her to bend her knees. Help her do that by putting your knees against her knees so that she feels safe because there is some kind of support fro her not to fall. Slowly lower her butt to the toilet seat.

Raised toilet seats work a lot better than those low comfy toilets. Also try to add color stripes to the seat so that she can see the toilet seat. They fear of falling because they can not see the white toilet seat in the probably white tiles environment.

Good luck.
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Toadhall Jan 2019
Very good point about the white seat against the white tile! This applies to a lot of situations. With dementia, people have trouble with seeing things like this. They will find things such as a pattern on a floor to be confusing. It reminds me of my robot vacuum, he thinks a black floor is a cliff he will fall off of.
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Sadly this does happen. It's happened here. It can take me as long as 5 to 7 minutes for her to understand the word "sit". Now I use pull-ups. She can be re-trained to use the bathroom. It takes time and patience. I take her in first thing in the morning. Then an hour after breakfast. You'll learn her bathroom pattern over time. Mine doesn't urinate right away. Sometimes it can take up to 10 minutes for it to happen. She doesn't like to be left alone in the bathroom so I sit with her while we wait. It does happen. All this takes time. I hope this helps.
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Try using Depends or some other similar pull ups. She may be moving towards not recognizing when she needs to go.
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I was interested in your question and the answers, because my aunt sometimes forgets how to lower her 'electric' chair in order to get up.  Then she'll be fine for awhile.  So with her, the memory comes back, but who knows for how long.  I think I'll go watch Teepa Snow.
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I suggest that she start wearing Depends. Sadly, this is part of the aging brain, e.g. her brain is not able to tell her to sit on the toilet. A higher toilet and grab bars will help because perhaps she is afraid of falling and that is why is not lowering herself onto the toilet seat.
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My mom has trouble sitting. I make sure she can fell chair at her knees, then wrap one arm around her back and apply a little pressure. I how take her to the potty chair with pot sitting on floor ( bed pad under pot) so I can clean her. Some times I have trouble getting her to stand up. She is late stage. Can take a long time before she goes
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Glad to know others are in the same situation - I'm not alone (I love this forum!). You've received some great advice. I agree that she's afraid of falling. My husband has a toilet seat riser with arms attached and it has been an immense help. Whenever my Mother uses his bathroom, I show her the arms and tell her to hold to them and then she's able to sit without fear. There are so many to choose from and most are easy to install. Unfortunately, you can't take it with you when you go.  Eww, that sounded strange!
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I ask my wife to look behind her at the seat so it isn’t a mystery and place her hand back so she can feel of the seat which confirms that there is indeed something to sit on and she can judge its height. This seems to lessen the apparent fear of sitting down on nothing. Also hold her knees such that when she finally does sit down it forces her butt all the way back on to the seat; rather than 1/2 way back which would be not good. :-)
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It is part of the progression of the disease - and she likely has moved into the next stage, when they forget how to toilet themselves. People with ALZ don't get better or move backwards into a previous stage.
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Hi Needle; my heart just broke when I read your post. I was taking care of a precious Alzheimer's lady not too long ago. We became very close and she went through this very thing. The only thing we could do is what you're doing now to start with, and eventually ended up with extra protection for her as far as pull ups . It really was easier on both her, the family and me. Her sister inlaw and I felt awful when we had to physically get her to sit down. We did try to raise the seat as high as we could so she didn't have to go down too far. Also I would drape the disposable pads on the seat so the back of her legs would feel something soft and not something cold. It seemed to work at times, but over all we ended up just having to clean her when necessary. Speaking softly to her and calmly will help also both you and her. Just keep loving g her through all this. This is such a hard illness to have to see anyone go through. My prayers are with you.
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Time to start buying DEPENDS/Pull ups, and when you put them on make sure to put on two.
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My father with vascular dementia occasionally had problems getting into a car on the passenger side. I not sure if the fact that he had usually been a driver contributed to this problem or not. Instead of asking him over and over to pick up his foot and put it in the car, I started opening the rear door and showing him how to get into the seat. The demonstration would work when talking did not.
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My Mom's knees hurt a great deal. I think this inhibits my mom use of the toilet as many times she should

Is it possible your mother is experiencing pain as she begins to squat to use the toilet? At home a riser toilet seat may help. You can get these at most medical supply houses. Might even be covered by insurance if her doctor prescribed the device.

Time to use incontinence pull up underwear.

Good luck to you both.
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There are very wide toilet seats for bariatric patients, almost like a bench, that can be raised and have sturdy grab bars. When sense of space and balance are compromised sitting down on toilet can be tricky. Making toilet seat as much like a child's potty seat, comfy and very easy to get into, will help maintain that independence.
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