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I need all the advice and prayers anyone can offer. My mom, who has had urinary incontinence for 15 years and has had severe dementia for the last three (following a hospital stay where she was given anti-psychotics drugs when I wasn't in the room -- see profile details) ... anyway, long story short, all of a sudden, last week, after a lifetime of constipation issues, she has suddenly decided that, instead of calling me to help her to the toilet, she would rather go in her diaper and lay in it. (It's not diarrhea.) I have read some of the other stories on here and know that others have it far worse. I just want to know how to stop this early while it's still the "new" thing. It's the one thing that would make it necessary for her to go to a home where - (a) it's dangerous AH because of COVID and (b) I know she won't get the attention to diet/eating habits, etc. that are so important.


I had an opportunity for her to go to Assisted Living while she was still sort of semi "with it" but she started crying on move-in day and the manager was like, "look, we have a waiting list of people who can't wait to be here; we rather not have residents who are miserable." So she is still with me in my home. (Of course, since then, she has said that she would rather be in a home.) Anyways, I can work from home (fortunately) but beyond that and cleaning, gardening, repairing stuff, etc., I don't have the ability to go out, do anything I enjoy, etc. and it is taking its tole -- I've gained more than 50 pounds in the last three years.


The whole bowel-in-the-diaper development has taken it to another level -- I am spending so much time cleaning her, the sheets, the bathroom, the rug, etc. that I can't even keep up with basic stuff like my own laundry, vacuuming etc. Working out? Forget it. We did a few weeks with a home health care aide right before COVID and, to be honest, I didn't really like it - it felt like there was always a visitor in the house, no real time to put on my favorite ratty robe with the hole in the elbow in it, and not care, etc. I need more time for myself - not less. 30 or so years ago, my mom was the primary care giver for my aunt (who was living with us and who had Alzheimer's) until my mom arranged for home health care aides to come in from 7 to 5 and, to be perfectly honest, I think it wrecked my parent's marriage. Someone was ALWAYS under foot. I was away at school but when I would come home, you could just feel the tension. Flashback to 2020/2021 -- I don't think it's safe unless you have a live-in / round the clock person who doesn't see other patients (which we can't afford).


My mom did everything she could for me as a kid - she would never take a chance and put me in a potentially dangerous environment. I feel like, at the very least, I owe her the same but this last thing is just too much -- I did a Zoom call the other day and afterwards, my friend asked me what is wrong because I look "defeated." I didn't know you could see it in my face. :-(

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My mother goes in her pull up too. I’ve never had to wipe her down. I installed a bidet attachment to use if she gets diarrhea. I change her pull ups about 4x a day while she sits on her raised toilet seat. I put a little cornstarch powder in them to prevent a rash. If your mom is laying around in a dirty diaper you need to check it more often. She can get infections. You can see if it’s sagging just from looking at it from behind then herding her to the restroom. I feel like my mom’s toiletries are under control here except if she has a bm at night she can feel it in her pull up & likes to put them in her bed or on tables. She also sometimes eats them which is my most difficult part of caring for her. Other than that happening when I’m asleep, I haven’t had trouble with her incontinence.
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Try doing as much as you can to make toileting safe and convenient - have a raised toilet seat with sturdy grab bars and/or a bedside commode available. Try a toileting schedule, take her to the toilet regularly through the day, especially after meals, and leave her on the throne for several minutes. If she tends to go around the same time each day then you are more apt to be successful. Unfortunately for me at least it reached a point where I considered one success in 5 was better than none, KWIM? It's really akin to potty training a toddler in reverse, they honestly have no ability to recognize the need to go or if they do they can't react quickly enough to make a difference.
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