How do I stop my mom with Alzheimer's from handling her waste?

1 answer | Last updated: Sep 27, 2016
Cookiech asked...

I need your help again guys... My mom has always been constipated since the beginning of her Alzheimer she's been doing something so disgusting that I just don't know where to begin. She takes a stool softner that the doctor recommended but she still does this 'act' which I have no idea how to handle. Well here goes; she pulls out her 'waste' with her hands instead of using toilet paper. This happens when I'm not watching her of course and even if I'm close, by the time I get to her, she's got her hands dirty. I could be standing right next to her and she watches me constantly so it's not that I'm far; she still does it. She's been wearing depends all the time now cause she leaks urine but now this is new. At times, she's in bed and when she gets up, the side of the bed is dirty as well. It's not that I'm complaining but this is really 'stinky' and disgusting. I run every time she gets up from bed or the rocking chair but she's very sneaky. Does this only at night time. I have been sleeping with her for about a week so do I sleep? Not really. My hubbie is the best. Very understanding but it's a lot to deal with. Oh, by the way; she sometimes gets out of bed after the 'act' and throws 'it' near the bed. Behind the dresser or tosses 'it' towards the wall. On Saturday I was doing the laundry which I usually do at home but the washer wasn't working too well so I while I was at the laundry place, she did the 'act' in public. I just turned for one second to give the dryer more time. I did take all the cleaning things, diapers, change of clothes, etc. but I was surprised at the peoples reactions. One man just left upset, others said to leave her home, the rest covered their nose. I thought I was going to be thrown out. I had no choice but to take mom with me but will this ever stop? Day and night; I don't rest. My daughters help but not in this dept. She use to do the peek a boo at the bedroom door but now she gets up constantly but that's after she's done the 'act' under the covers. Wow, this is really taking a lot out of me. HELP


Expert Answers

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

Many families give up caring for their loved ones at home the day they are faced with incontinence. You have gone way beyond that. You have a wonderful family; my hat off to both you and your husband.

One of the side-effects of Alzheimer's medication is constipation and I'm guessing that you were not warned of that when your mother first started on them, so you could have taken precautions with stool softeners from the start.

There may be a couple of different factors at play here: Your mother has gotten used to not feeling "finished" with a bowel movement unless she engages in this ritual. I'm also wondering if her manipulation has actually affected her sphincter muscle and she's no longer able to control her elimination. I suggest you take her to a specialist. She may also have developed hemorrhoids, which could make elimination difficult and painful.

In the meantime you can get her into special outfits that close in the back, making it difficult to impossible for her to disrobe herself. Go to a search engine and look up "specialty clothing." Or you can create your own: Double-stitch a pair of slacks or sweat bottoms to a top. Stitch closed any front or side openings. Lastly, attach a long zipper in the back, from a few inches below the waist to the nape of the neck. You can do this with day clothes as well as pajamas.

When this happens in public, remember that people who are glaring, sneering etc are ignorant and rude. As your mother's advocate you can be quite forceful and tell them you're sorry about the inconvenience but your mother can't help it because of her dementia. It's a condition that can happen to anyone of us.