Not Incontinence but bathroom messes and clothes soiling

Posted by spolson53 @spolson53, Nov 22, 2024

My wife has been rogressing along the dementia path for several years now and is clearly at Stage 5. She is NOT incontinent, but every couple of weeks she will get totally confused in the main bathroom (tile floor fortunately) and I will find her standing surrounded with poop. She wears wool clogs and I have to run them in the machine to clean after this, using OxiClean along with detergent. One time that didn't total work on odor, so I used my ozone generator in a cardboard box to treat them. Fortunately that worked. The cleanup in the bathroom is major. But even worse is that she wears nothing but dresses and has given up on underwear. Not that it would make any difference. Her current dress has dried poop on it, on the inside surfaces. Fortunately, after it is dried, it doesn't seem to smell like dog poop would. But one can make out dicoloration on the outside of the dress that hints at an issue. She absolutely refuses to change her dress or be cleaned in any manner. To the point of becoming combative if you try and force the issue. On normal days, she does wipe herself but puts the tissue in a drawer, not the toilet. That is rritating but not the wrost problem. Who knows the condition of her body when she has the big blowout. She is on Lexapro daily, and the doctor has given me Ativan to give before trying to change clothes/bathe. The last blowout was after I gave that to her, so I am nervous about trying it again. We have a caregiver come in once a week, but that company has said they can assist, but can't make her do anything. It is mostly just to visit with her (they get along great). I am at a total loss as to what to do....

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celia16 | @celia16 | Mar 19, 2025

In reply to @tsc "I immediately had an attack and rushed home in dirty underwear!" + (show)

Oh, I see. I had been serving him peanut butter lately….hmmm….but it’s normally been okay. He had a peanut butter sandwich yesterday, but no diarrhea. I’ll keep that in mind though.

verol65 | @verol65 | Mar 19, 2025

In reply to @celia16 "Oh, I see. I had been serving him peanut butter lately….hmmm….but it’s normally been okay. He..." + (show)

Everyone's different. If peanut butter doesn't provoke a reaction in your dad, you should consider still offering him that.

pamela78 | @pamela78 | Mar 20, 2025

What you describe is awful. I'm so sorry for what you're going through and it scares me to death to think this may be in my future with my husband. There must come a point when the caregiver must insist on something necessary, like putting on clean clothes. How on earth are we supposed to handle that? Advice? Strategies?

celia16 | @celia16 | Mar 21, 2025

In reply to @pamela78 "What you describe is awful. I'm so sorry for what you're going through and it scares..." + (show)

With some people, symptoms make it almost impossible to provide care in the home. Insisting, begging, etc., mean little to the person with dementia because they are not capable of understanding or processing information.

memoriestomoments | @memoriestomoments | Jan 30 12:53am

In reply to @gw1 "I'm so thankful that I found this forum. I have been looking at other forums/websites for..." + (show)

@gw1

I'm so thankful that I found this forum. I have been looking at other forums/websites for some practical experience, knowledge, and tips from other caregivers, but couldn't find one that discusses "real life" issues and how people are dealing with this very difficult area. I can relate to alot of the comments/stories, but have found it interesting how others have similar but yet different manifestations of loved ones in the different stages of Dementia/Alzheimers. My wife of 43 years, began showing signs of memory loss approximately 12 years ago...she is now 72. It has been a very slow progression, but the last two years, things have definitely changed. Her bathroom issues started about a year ago, but now we are having some of the same things happening that others have described, with incontinence. She wears adult diapers all of the time now, due to the. . inability to sometimes not know when to go to the bathroom. We are attempting to get my wife on a bathroom schedule, but not always successful. Trying not to be too graphic, but she doesn't know how to clean herself, when she does make it to the toilet, so I now have to wipe her, when she lets me, but the diapers kinda do the wiping. It sounds like from other posts, that alot of caregivers are dealing with the same thing, although some have it ,"much worse", which I'm sorry to hear. We can no longer go on any extended car trips, for fear that if she did have an accident, I wouldn't be able to get in a "women's bathroom", to help her. I have learned quite a bit from others, so thank you for all of your experiences. We also, have a healthcare lady for approximately 4 days per week, which is a big help, but my wife will not allow her to change her diapers or give her showers, ( which I now have to physically get into the shower to make sure my wife gets clean)....as I'm sure others have experienced that she does not want to get a shower.
My wife has begun the constant talking, using correct words, but totally unrelated, and this has started to be a struggle for me. Her neurologist did prescribe Seroquel several months ago to try and help with morning shaking, but the biggest positive is that it does cause her to sleep. We started on 25mg, and sometimes that helps, but not always. I now use 50mg, and most of the time it does help. Sleep comes and lasts for up to 8 hours or more.
I don't like to use medications, (which I would imagine, most don't like to do), but, as we know, we are treating symptoms, not necessarily trying to cure anything. The sleep/quiet times are welcome after several hours of nonstop incoherent talking/asking questions.
Our family did consider a Memory Care several months ago, when the incontinence began, but I decided it wasn't quite time and are trying to keep her at home for now. Sorry to be so lengthy, but I will certainly be open to suggestions and look forward to reading what others are doing. Praying for patience, strength, and wisdom.

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@gw1
It sounds like you are doing a great job with your wife's biological state and in dealign with her recent communication changes.
Just a couple of practical matters.

I take a bag with us whenever we go out that has diapers, wipes, gloves, plastic bags and a change of pants for my husband. Here is my main point for you: You will find that you will be welcome in the ladies' bathrooms. "Just look at whoever is there and say, "Ladies, I'll be bringing my wife in." I take my husband in there all the time Once people see that I am taking care of him, they are always very supportive. It is great that there are many more All-Gender bathrooms now and Family bathrooms as well, but feel free to go to the Women's bathrooms. BTW: If there are several people waiting I will go in and ask if anyone waiting needs the Handicap stall. If not, then I bring my husband in and we use that stall as soon as it is vacant.

My husband got used to having people help him with toileting when he started going to a day program. That doesn't mean that he liked it all the time, but it was not new. At home, I wonder if you can ease into having the caregiver help her with changing her diaper, etc. by having the caregiver there when you are doing it, then having her help you with it, etc. Anything that happens regularly becomes "normal", and at least better tolerated if not accepted fully.

For example, we installed a heated bidet seat on my husband's toilet. when he toileted independently he liked using it. Later, when he needed help, he would yell every time that I turned it on. Over time, we made a habit of announcing that it was going to start and he eventually got used to it.

Wishing you best of luck!

ocdogmom | @ocdogmom | Jan 30 1:33pm

to spolson23@ spolson53 I realize that your post is from 2024 but maybe these ideas might still be helpful if not to you but maybe to others.
I am so sorry that you are experiencing these incontinence issues with your wife which is bad enough but having to fight with her to get her cleaned up is worse I think and must be both physically and mentally exhausting.
I would think having her in dresses rather than pants gives easier access clean her up. Maybe simple skirts with elastic waists and pockets would be easier to change in and out of. You could buy a couple online or have a friend that sews make a couple for you to see if this helps. Another thought that may or may not make cleaning her up easier is to remove her skirt and disposable underwear and hose her off from the waist down with WARM water in the shower. This saved me a lot of time and dirty towels with my kids when they were still in diapers. There is one caveat though, the bathroom must be warm enough for her to feel comfortable with taking off her clothes. I had a hard time getting my husband in the shower because he was felt too cold to take his clothes off. It took me a while to figure out that that was the reason because he was not able to express that. So I bought a small electric room heater to put in the bathroom with the door closed at least an hour before showering. For safety reasons I would remove the heater before I brought him in there. I suggest you contact her physician again and see if there is any medication changes that may help. Sometimes different times of the day are better for cooperation. I avoid early morning and after dark for doing things that myself husband doesn't want to do. Also, and this is a big one for us, if he refuses to do something I say well maybe in a few minutes. then try again in about 5-10 minutes. There are many helpful ideas about getting the dementia patient do cooperate with necessary cleaning up. I highly recommend Teepa Snow's Positive Approach to Care. The website offers so much information and insights to what you are dealing with. I also believe that you can get a personal consultation regarding your specific issues at this point in time. There are many videos and podcasts that can be very helpful. I learned so much about what the dementia patient can and cannot do because of their brain failure. The idea is to discover what she is still capable of and work with that.

memoriestomoments | @memoriestomoments | Feb 1 2:09am

@sploson 63
You are in such a difficult situation. I kept thinking about it. I'll share an unusual option for addressing it. I don't know if it would be affordable for you, but might be worth a try.

Many memory care facilities will do respite care. I'm thinking that this might be a very good idea for your wife. First and foremost, those facilities have ways of putting people on schedules and using processes that tame situations like this. They have to. With a couple of weeks of this "training" your wife may be used to being managed to a more hygienic lifestyle.

Of course, you can really use a rest, so the respite care would serve two purposes.

All the best to you.