Expert: Mary Gordon - 12/12/2008

Question
Hi, There is an Alzheimer's Disease client's family that is concerned about her new bathroom habits. She is wrapping her waste up in toilet paper to save. I was thinking there has to be a psychological term for this behavior. Is she thinking her waste is a part of her (like a newborn) and can't just flush it away? The only suggestion I have for this family is to always be present when she is in the bathroom. Any other suggestions to stop this behavior? Thank you, Amy King Program Coordinator Central Michigan Region Greater Michigan Chapter Alzheimer's Association  

Answer
Hi Amy,

I think you are attributing motives to this poor lady that are more complex than she is capable of. People who are in Stage 6 (when continence issues really start up) can't really reason through this kind of thing to the point where they have a conscious understanding of what they are doing or why. There are a number of dysfunctional behaviors that are often seen in people in mid to later Alzheimer's, such as hoarding, hiding things, flushing things down the toilet, smearing of feces and other inappropriate bathroom habits, eating inedible things etc. What you are seeing is just an example. My guess is she's at Stage 6c, where they really start to have trouble with the mechanics of using the toilet - doubtless she is also having issues with dressing and bathing properly as well. 6d is urinary incontinence and 6e is fecal incontinence.  

In the months before my mother in law lost all continence, she would put the used toilet paper in the waste paper basket. I think she had it in her head that it was like kleenex, so it belonged in the garbage. If she soiled herself or any clothing, she would clean up with clothing or towels (even smearing it on a sweater), and then hide the soiled items in strange places (i.e. dirty towels stuffed into in boots, stained underwear rolled up in the pockets of her winter coat etc.). I think she just had a very vague and emotional sense it was distasteful, and an even vaguer sense that no one should know about it, so she tried to get rid of it - her poor injured brain didn't let her reason through a sensible solution, such as putting items in the laundry. I guess we should be thankful she didn't try to flush the towels down the toilet.

Toileting and hygiene are very personal issues. From a very young age, we are trained to not only control our urges to go to the toilet, but to regard feces with disgust. Using the bathroom becomes very private, and we don't talk about it with others. We feel ashamed about anything we think is "dirty" and we try to hide it, even from those close to us - after all, if most of us had any kind of accident, we'd be mortified if anyone knew, much less had to help us clean up. We're even embarrassed if we forget to flush and someone else goes in!

So, she's using the bathroom, she's getting confused about the whole process and she has a vague sense that feces is dirty and she has to dispose of it. She may not understand about flushing the toilet any more, how it works, where it goes. Certainly, when you think about toddlers being trained, a lot of them are frightened of flushing. In effect, she's trying to hide the evidence. Wrapping feces and hiding it or throwing it away is not that uncommon.

Her grip on understanding how to use the bathroom is going - and doubtless it makes her feel like she is losing control (more of a panic response than a intellectual thought). Emotions last much further into the illness than does actual logical thought. Her feeling of panic and disgust can affect her sense of dignity and self esteem. This is an area where many people find it very hard to accept that they need help from someone else in such an intimate area of their life − even (or sometimes, especially) if from someone very close to them. The thing is, if she is doing this, she does need supervision in the bathroom. Who knows how well she is able to clean herself or if she is washing hands after handling her feces, or what else she might be doing in there or touching.  She needs someone with her - this is as good as it gets, and the road ahead is all down hill. Its a heads up for the family that incontinence is coming so they can be prepared and watching - she may even start to relieve herself in inappropriate places, such a waste can.

I wish I could tell you something that could "fix" this but even if they could reason with her and convince her to do something different, she won't retain a memory of the discussion long enough to follow through.

Hope this helps. Toileting and incontinence are very difficult for many caregivers to cope with.

Mary G.