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addchapter21 Asked October 2021

Has anyone witnessed strange toileting behaviors?

To keep my mom from wandering during the night I have put a commode in her room next to her bed, an alarm on the door, an audio baby monitor and a camera baby monitor to be aware of what she's doing in her room when the door is closed. This morning I checked the monitor to see if she was awake and ready for a shower and saw that she was sitting on the commode, pooping, which I thought was no big deal. Until I saw something that horrified me and still has me in shock. She took her index finger put it in her mouth, put it up inside her rectum, pulled it out, wiped it with a tissue, put the finger back in her mouth and kept repeating this behavior with the same tissue. I was sickened, horrified, saddened and so many other emotions. Whenever I think of it I just start crying again. Her fingers were covered with feces and she was walking around the room with her pants down looking for tissues. When I tried to go into her room she had the door locked. She has had issues with constipation and diarrhea. She was getting Miralax and prune juice every day until she told me she was pooping too much so I cut back the and eliminated the Miralax and she was just getting the prune juice. Then this week she told me she didn't want the prune juice anymore either. I told her she must tell me if she starts to get constipated. She could communicate this to me but when she runs out of toilet paper in her room she wont tell me. She'll use tissues or whatever paper she finds in her purse. I found a stash of dinner napkins she's been using. She knows enough to store dinner napkins but why not toilet paper? When she uses the commode she takes tissues and lays them over what she's done in the bowl, almost like she's hiding it. I had no idea that I should expect behavior like this with toileting when I decided to move in and take care of her full time. She is so fastidious with how she looks. Always has to be looking in the mirror, combing her hair, putting on makeup and jewelry and dressing in stylish clothing and everything matching. She has always been OCD as far as cleanliness in her house. This behavior is so unlike her and appalling. She has neighbors, friends and family convinced that "she's not that bad". This is what I've heard from them. I'm not a professional caregiver. Her doctor didn't prepare me for this or what to expect in the future. I tried calling him to tell him this and get some advice. The receptionist wanted to know in detail what the problem was which I thought was private. I asked that he please call me back and said it was a toileting issue. She insisted on knowing what it was so she could tell a nurse and have her call me. I wanted to talk to the Dr. Anyway the incompetent receptionist transferred me to a voicemail box where someone would leave a message if they wanted a prescription refilled. I'm feeling that she should move to a memory care facility now. I'm not qualified for this but the guilt and uncertainty I'm feeling is crushing me. What advice can you give?

Katefalc Oct 2021
I’m so sorry for your stress and sadness. Please know you are not alone. We are all in this together and we are all heartbroken over these behaviors that are not “ typical” of our loved ones💜💜

Charlie714 Oct 2021
I am caring for my 91 year old Mom and yes unfortunately this behavior is not unusual. My Mom was the same always had her hair perfect, lipstick on and dressed nicely. So seeing this behavior is A shock right now, but in time you will realize that she can not help what her I’ll mind tells her to do. You are stronger than you know. If you have to wait six months for memory care than take care of her one day at a time. Keep her finger nails short. Put the Miralax in her juice and continue to give it to her. Just mix it out of her view. And wash her in the shower. Trying to get poop out from under finger nails is very difficult. Putting her in the shower will clean her up much faster. And know that your Mom is not able to make good choices right now and it is up to you to make them for her. The toileting issues for sure are the most difficult. And seeing your beautiful Mom deteriorate is very hard. But try to remember who she was. Know that she raised a strong woman and that now it is your turn to be that strong women for her.

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Maidenkaz Oct 2021
Please be aware that human feces contains E.coli bacteria which can make people very ill. I believe she must be supervised during toileting so she does not continue with this behavior and everyone should wash up well afterward.

ArtistDaughter Oct 2021
Yes, a memory care facility will toilet her every couple of hours and keep her cleaned up. My mom kept doing her pooping in the wastepaper basket instead of the toilet. Eventually, when wearing depends, she would stick her hands in her poop and then it was everywhere with an entire load of laundry for them to do. She had no idea that this was a problem. The caregivers were great at not making her alarmed or ashamed and just cleaned her up. I was there to watch several times and then actually had to do it myself a few times when the staff was busy with the wandering guy, who liked to take all his clothes off and play catch me if you can with the staff.
Cover99 Oct 2021
LOL That guy sounds like a hoot
Grandma1954 Oct 2021
Mom needs to be supervised at all times.
A baby monitor is not going to do that.
Having a floor alarm is good but that means when you hear it you get up and go to her.
You also must MUST!!! remove the lock on moms door. (what would happen if she fell and you would not get into the room until you found a key pin to unlock the door? Would you, could you break the door open to get in?)nds like Memory Care would be the best for her. And your family.
Your family should always be priority and to have moved away for months to care for mom is not what should have been done. For all you know mom could live another year, 2? would you stay away from your family for that long?

cxmoody Oct 2021
My mother’s doc was zero help with her dementia issues. I’m convinced that most of them are either uneducated, or are honestly too busy with the myriad other details of their practice.

If you’re looking at Memory Care, the good ones will come out and do an assessment for you.

You can begin, if you want to, by taking on-line tours of the facilities that interest you. Then, move on from there.

Any naysayers have most-likely never cared for a dementia patient. Maybe their Aunt Susie was a sweet little old lady, with no dementia behaviors.

I say that if you have never had a loved one with dementia, you don’t even get to vote, or express an opinion. It is NOTHING like caring for someone without a dementia.
addchapter21 Oct 2021
Thank you for your words. I feel so devastated and have been in shock today.
lealonnie1 Oct 2021
Try not to freak out TOO badly here, and try not to keep this information a secret from your mom's doctors, as horrifying as you find it to be. This type of behavior is typical with dementia/Alzheimer's and nothing the doctor's haven't heard before. It sounds like it's time for your mom to move into Memory Care Assisted Living now where she can get help with all of her toileting needs 24/7. Things like this become too much for us daughters to handle alone at home, let's face it.

When I worked in a Memory Care AL, we'd have elders pooping on the carpeting in the hallway or on an upholstered chair thinking it was the toilet. The caregivers would come along and clean it up, then take the resident back to his or her room and change them, get them all cleaned up, and back on their way to the next planned activity.

The neighbors friends & family that are convinced your mom is 'not that bad' haven't seen her in action on a full time basis! Plus, your mom can 'showtime' with the best of them, like mine can, and cover things up by dressing well and making small talk (that has no real substance) till the cows come home. My mother is almost 95 with advanced dementia (and living in Memory Care AL) and can STILL make small talk to convince you she's fine! Don't ask her a real question though, that's when it all falls apart!

Your mom doesn't realize that what she's doing with her finger is unhygienic or problematic in any way. Who knows WHAT her brain is telling her, really? I will tell you that my mother's Memory Care is wonderful, for the most part, and the caregivers love her & treat her beautifully. I go visit her on Sunday's and we talk daily (for the most part). I don't feel even slightly 'guilty' for placing her in Memory Care b/c I'm simply not qualified to deal with her myriad of issues by myself here at home. It's not safe and she can wander away in the middle of the night, which is what happened to a client I cared for years ago. He walked out at 3 am and fell in the street, suffered a subdural hematoma and died the next day in the hospital.

Go check out some Memory Care ALs in your neighborhood and see what you think. If you can't reconcile yourself to placement, hire in home caregivers 24/7 which will be more expensive than Memory Care, but see if mom can afford it.

Wishing you the best of luck with a difficult situation. Sending you a hug and a prayer for peace.
addchapter21 Oct 2021
Thank you so much. I wish we were together to discuss. Your response was so caring and touching to me at this time. I haven't been able to get over it yet. Still in shock and busting into tears most of the day today. I have a AL memory care evaluation scheduled for Nov. 3 but there is a possible 6 month waiting list. I don't know if I can last that long knowing what I know now and if it gets worse. My mom has always been my authority figure and person I sought counsel from all my life. It was such a shock to see that. When she argues with me over things she still seems like she's the same person.

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