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HI everyone, this is my first post here. It's a sensitive (and gross) subject. I feel I should warn you. It's SO difficult to find the time to stop and seek advice from other caregivers when caring for someone with dementia is so overwhelming, 24/7. The woman I take care of is a friend (she lives with me and her best friend of 40 years, so there are three of us). She has moderate dementia. She has forgotten many long-term things, and definitely has virtually no short-term memory now. But most of all, the BIG issue right now... She has become 100% obsessed with peeing and pooping, and everything surrounding it. She's constantly saying: "So full, so full, have to get it out, have to get it out." And, she rubs her stomach quite hard, for hours a day, repeating that over and over. The issue is, she's not full of either. This sometime happens within 60 seconds after she has gone to the bathroom. This is to the point that we had to take away all access to the toilet. She was in the bathroom for hours a day, 20+ times a day total, and was using her fingers to try and pull poop out. Then, she would smear it everywhere, trying to get it off of her hands we're assuming. So now, she is now in pull-up diapers 24/7. They've worked alright for about a month now, except she won't keep her hands out of her diapers, front and back. And last night.... goodness gracious mother to betsy... last night, we didn't hear her get up. She got into the bathroom, took off her diaper and smeared poop EVERYwhere. Walls, toilet, sink, floor. I can't even describe it in words. There are no words to do it justice. But, the smell woke me from sleep all the way at the other end of the hallway. With all of that said, I don't mind cleaning. I change her bed already, 3-5 times a day because she is obsessed with going to the bathroom. It consumes almost every waking minute and has even kept her awake all night long before. We have to limit liquid now because she's obsessed with drinking as much as humanly possible so she can pee and pee and pee again. We can't give her a drink without her guzzling it immediately. She says over and over: "I need to pee. I need to pee. I feel so full of pee." And on the poop side of things (because it's always one or the other). "I have to get it out. So much poop. I'm so full! I have to get it out." She keeps overflowing her diapers because she pushes the pee out as hard as she can when she realizes she has pee inside of her. She's overflowing maximum absorbency pull-up diaper underwear (every brand, including Depends) at least a few times a day. I've tried everything I can think of. We talk to her about it 15+ times a day, trying to get it to "stick", trying to get her to realize that she needs to relax about the bathroom habits. A lot of other things have hit her like a brick lately too. Her sense of humor is almost entirely gone. She talks to herself but now she stares at one point on the wall as if she's talking to someone she can see there. But, she can still speak well, she can read, although signs in her room on the walls don't work. They seem to "blend into the background" within about 48 hours of putting them up. At this point, she can't go into a day program or go out to dinner or the theater, nothing, due to this 24/7 obsession with "feeling like she has to go to the bathroom." I haven't heard of this happening to anyone who is barely moderate. She was mild just 3 months ago, but has gone downhill like a rocket this summer. Please comment if you have any insight on this. We would appreciate it so much. It's becoming very overwhelming. I'm the cook and cleaner in our home and these days, it's all I do: cooking, feeding, cleaning up poop and pee. It's like an alternate reality at this point. I swear I smell it everywhere I go now, even in my sleep. The constant discussion about it is the worst of it. I feel like we can't just not talk to her. She needs social interaction. But, when I do spend time with her in her room, all she talks about is the bathroom, or feeling full and "maybe I need water so I can pee". I'm out of ideas. I just know it's such a health hazard. We have her on camera now, and an alarm on her bedroom door in case she leaves the room. The camera is on two way-audio. So, when we see her put her hands down her diaper, we tell her to stop. Over and over and over, all day long. But, get this... She never, ever does it when one or both of us is in the room with her. Never. She only does it in secret, privately (she forgets about the camera). Sorry this is so long, but I wanted to provide as much info as possible. Thank you.

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She is not "moderate", she is advanced dementia. Probably Stage 6 out of 7. Ask the MD for meds for obsession/compulsion.
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Due to her degree of dementia, it seems like your options are limited. I think that I would still ask the doctor for a psychiatrist referral, unless she already has one and see if she might do better inpatient until her meds are adjusted.

And also try to keep her hands busy with some kind of activity board that can be kept in her lap.

And ask the doctor about the Adult Onsies to keep her hands out of her depends.

It sounds very stressful. Can you get respite care?
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To answer your question, Yes. In some people mental decline is faster than for others,
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It's still early with her meds, but, I might revisit the issue if no change occurs soon. Sometimes, medications have to be adjusted. Perhaps she needs a different dose or new med entirely. Also, have they ruled out her having anything that could be making her feel full, such as a UTI, cyst, bladder prolapse, hemorrhoids etc.? If she continues, I'd inquire if she needs to be placed in a psychiatric unit to get her meds adjusted.

What about a medication to help her sleep, so she's not awake to dig in her Depends?

If there is no medical reason for her feeling full, I might consult with a psychological expert about ways to distract her and/or prevent the digging in her pants. I would explore if it would be an option to have her wear Adult onsies that button in the back, so that she would not be able to get her hands into her pants. Since she is so fixated on it, I would get the doctor's input first. It could cause her increased agitation if she is prevented from digging. Some people have had success with the Adult onsies, as I have read about it on this site. I've never used them for anyone. I think they come in pajamas and daytime wear. I would think that her digging in feces would be quite unhealthy and would ask the doctor about those risks. It could prove unhealthy for anyone who comes into the home. I'd consider a professional cleaner to sanitize.

Perhaps if you could find some type of activity that she could occupy her hands with. There are activity quilts available online that have simple things like crinkley sounding fabrics, squeaks, zippers, etc. They are very basic and easy to hold, so she could utilize it without much focus and even with a degree of dementia.

Also, have you tried playing soothing music? Sometimes music and calming smells might help. I hope something helps.
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Thank you pamstegma. I've been hesitant to say that she may be in the advanced stage now, because she was out by herself walking the dog every day, only four months ago. She was diagnosed as mild then, and the doctor only changed her diagnosis to moderate six weeks ago. Does it really go this fast? I must admit, I've been shocked by the downhill spiral, but still thought we would have years left in the "moderate" stage. The doctor just put her on Lexapro (took her off of Zoloft). She's been on it for two to three weeks now. It is supposed to treat OCD. We're waiting to see improvement, but nothing so far. If anything, it's worse.
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Did the behavior start or drastically increase with the Lexapro, or was it changed to Lexapro to address the behavior? Was the Zoloft discontinued gradually, or abruptly?
Was she always focused on her bowel and bladder habits as she aged, or is this new.

People on here can help walk you through this. From what I have read, this behavior is not uncommon with mental decline.
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Thank you for your insight everyone. Yes, she's been checked physically and we've ruled everything out. This is all mental. A full meal makes it worse: the feeling of fullness. So, we've switched her from three regular meals a day to five smaller a day. That's been helping these past few days.

The Lexapro was started in response to both worsening depression/suicidal talk and the bathroom obsession. The doctor said weaning off the Zoloft wasn't necessary, but we chose to do it anyway, albeit not for long. I gave her both medications for 4 to 5 days and then dropped the Zoloft completely. The main difference we've noticed since then is much less depression. But the OCD is the same, if not a bit worse.
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Oh! And yes, she had IBS-type issues for the past 15 or so years before the dementia set in a few years ago. It turns out she has a gluten allergy and didn't know. The diarrhea and bloating, gas pain became very confusing for her around June this year. It scared her badly every time (almost every time). Enough that she would beg us to call 911. So, we went on a mission to fix it and thankfully we did! The first thing we tried was cutting out gluten in pasta and bread. She's had downright perfect BMs ever since, for several weeks now. That's one good thing! We do believe the years and years of bloating and diarrhea is affecting her OCD view of the issue now...
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Sunnygirl1, Yes, she has a psychiatrist. He just doesn't do much except prescribe her medication. And, yes it is very, very stressful. Every day feels like a week. Every week feels like a month. Last night, after getting her settled in bed at 1am (with plenty of meds to help her sleep), she fell asleep at 2:30am, after I had to force her to stop reading. I fell asleep right after. We have a motion detector alarm on her bedroom door that apparently didn't wake me last night, considering I've had less than five hours of sleep each night, for the last six nights. I woke at 6am, only a few hours after falling asleep. I smelled it immediately and jumped out of bed. She was sound asleep in her bed, but had smeared poop from the kitchen (on dishes, on the front of the frig, all over the stovetop, everywhere) down the wall in the hallway and in the bathroom. I've just finished 2+ hours of scrubbing and sanitizing everything. And, we've changed her bed three times today already. I literally have 14 dirty sheets, 25+ dirty bed pads (poop and pee), 9 nightgowns and 2 "going out" outfits to wash, in THREE days. We're in a NYC apartment w/o a washer and dryer. We have a beautiful laundry room right here in the lobby, but carrying it all so often now, sucks. I'm so tired. And, unfortunately, the only respite care I've found here in NYC is where we drop her off at a facility and it's a 2-week minimum. That's much too long. I need one or two days, three days maximum. And, I'd rather her be comfortable at home. We can go somewhere else to just sleep and relax. I wish that existed. But, having someone come stay with her 24/7 would be very expensive: hundreds of dollars. So, we just keep putting it off. We all love music and so we sing a lot of Adele and Katy Perry. She loves both of their music. That distresses all of us every night after dinner. So, we're making it! :)
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I meant: music DEstresses us every night. Not "distresses". That would be awful. Haha
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