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HELP! My Mother has a bedside commode that she uses often and seems very comfortable with - but lately she seems to like using the floor just as much. I put down bed pads (the heavy ones nursing homes use) as well as store bought ones underneath and she moves them. This evening I opened her nightstand drawer (full of cards, mementos, jewelry, etc.) to find that she had peed in a paper cup and everything was soaked. I am beside myself. What can I do? What am I doing wrong?

You are not doing anything wrong! This is dementia--the maddening part for those of us who are or have been caretakers. Somehow when all the normal neurologic connections are damaged and lost, there appears this totally irrational behavior which doesn't respond well to modification. My experience was having my husband wear two pull-ups to bed, but having total urinary incontinence at that time with still a sense of needing to urinate, he would hop out of bed, lean over and push the pull-ups and pajama bottoms down to around his ankles and then try to shuffle into the toilet, urinating the whole way. I would most nights then be up from 2-3-4 AM cleaning up the mess and making sure that he didn't try to stand up from the toilet until I had mopped up the mess so that he wouldn't slip and fall. And then into the shower if he was really a mess, new pjs, new pull-ups, etc. I did this nightly for about three months until I reactivated an old fever blister virus in my inner ear (probably due to being SO immune-suppressed from all the lost sleep, etc.) and came down with such a severe vertigo that I was totally incapable of anything and ended up in the hospital. At that time he went into assisted living where he then remained and never came back home, as he had also at the same time pretty much lost his ability to take the stairs up into our house. In retrospect, and something you might think of, I might have tried the actual "diapers" with the taped sides, which, with some reinforced taping might have been impossible for him to push down. However, that would have probably aggravated and disturbed him so much that I would have then had another problem to deal with at 3 AM! I can only wish you luck and strength, and the knowledge that "this, too, will pass..." (That became my "go-to" motto when feeling really down...)
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robinr Sep 10, 2018
Wow.  I will remember you when scrubbing minimal poo stains out of the $100 sheets we got my parents because mom does not wear underwear to bed.   I hope you find something that helps, and if nothing else, you need at least 3 days/nights away.  You don't realize how much sleep helps until you finally get some.
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Dear one,
You have done nothing wrong. My mother did exactly the same thing. She'd get up in the middle of the night, take off her pajamas and urinate on the bedroom floor. She would scream at the top of her lungs at 2am. Unfortunately I could not work and watch her all night too.
I had to place her in a memory care facility. She is doing much better there and seems happier than with me.
I honestly thought I'd loose my mind with all the difficulties of the dementia.

Please don't wear yourself to a frazzle. A dead caregiver is no good to anyone. Consider having her placed. It sounds like you have too much on your plate already.
And please don't think you've done anything wrong. This is how Alzheimer's is. It will only get worse.
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dlpandjep Sep 7, 2018
Thank you for reassuring me. You must've had a harrowing time! The screaming would be so upsetting. I don't want to place her because my brother lives in her home and I'm afraid they would take it. One day at a time... Thank you for your kind advice.
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I would suppose she has dementia too. First check for a UTI. If not a problem, then I will say, my mom went down hill real quick. She lived only two months after that started. She was more confused than ever. We loved on her. I had decided to just change carpeting after she passed, as I couldn't keep ahead of it. I had hospice come in and they had a hospital bed. They put a Foley in her, and I had to change how I did things those two months. She had to be changed for #2 frequently. I am glad I did all I could. My husband helped me.
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dlpandjep Sep 10, 2018
Thank you for your suggestions and sharing your experience.

I took her to be checked for a UTI, but she couldn't go at the clinic. Hoping to get a sample at home. I think she has one, from her odd behavior.

Bless you for the love and care you gave your Mother. You must have a very special husband, to help you.
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I was going to say time for Depends but they can be taken off. All I can say is to put her on the Commode every couple of hours. Otherwise, if you are going to keep her with you then u may want to change to a vinyl floor.

I really understand how you feel, but we have to be ready to say, I can't do it all. Mom is only going to get worse. If Dad is not showing signs yet of Dementia, he may. Parkinsons and Dementia go together. I would not wait until you get drastically overwhelmed to make a decision about Mom. If your parents have no money for an AL, then talk to Medicaid. If your brother is disabled or had other problems he maybe able to staynin the house. I found I just wasn't a caregiver. I went around at the different facilities near me and took tours. When I walked into the last one, I knew this is where Mom had to be. She had the best care there. The aides and staff loved her. Even though she was not able to participatevinvall the activites, they still included her. One person really cannot do it all. It does take a village.
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dlpandjep Sep 7, 2018
I don't know if I'm stubborn, determined, or just afraid of failure. My Mother is terrified of going to a NH and I promised her she never would. My Dad feels he has no one but me and really, as care giving goes, he doesn't. I appreciate you sharing your experience with your Mother - you were wise enough to make decisions that benefited both of you. I know that there may come a day when I just "can't" do it all any more and I pray that I have the wisdom to do the right thing. Thank you JoAnn.
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Janet, you asked about if I get depressed, if I am on that same guilt trip. Oh, yes, I am. My husband is bedridden and still very sharp mind-wise. I do everything for him but feed him. Sometimes I am so nasty to him I want to burst into tears and beg him to forgive me. He was never much of a husband and at least once during our marriage found someone he liked better than me. Now, I’m wiping his behind and bathing him every day. He weighs over 300 pounds and my bad back is even worse from flipping him in bed to change him. I get REAL down. He can’t go to a nursing home because we can’t self-pay. If by some chance we would ever qualify for Medicaid, they claim they will ,save you enough to live on, but we don’t have enough now even with our 2 checks. I would have to give up everything to live in a very small apartment.

So yes, I am very depressed and anxious. I get thru by taking one day at a time. I’ve learned to say no to some of Hubby’s orders/requests if I don’t feel like it. I’m still-looking for a solution, like everyone else on this forum.
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dlpandjep Sep 9, 2018
I am so sorry. From your posts, I thought, "this woman's got it all together," and wished I could be like you. Well - I do. But I wouldn't want your circumstances! I struggle with a Mother who has bouts of diarrhea and the constant messes, but I love and respect her. You are giving your all to someone who has disrespected you and your marriage. Oh, how my heart aches for you. You are a jewel of a woman to sacrifice and care for him in spite of it all. I understand the anger and frustration and I appreciate your willingness to share. In a sad sort of way, it's comforting to know others share your same struggles. This is a hard road to hoe and no one can begin to understand unless they've been down it. I pray for you as you continue to care for your husband - may you find moments of peace and joy in the daily routines. I also pray that you find help with the burden of tugging and pulling on him and you find the solution your looking for. Bless you, you precious woman.
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I think it is time for adult diapers for mom - just for the hygene factor alone - don't ask her .... tell her it is for her own sake or yours - she is going down a path that you can't follow - you may have to buy adaptive clothing to stop her taking off the diaper to use the floor or use some safety pins or other adaption to keep the clothes on - I see one lady in NH that has 1 piece suit with a back zipper to keep her from undressing all the time
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dlpandjep Sep 10, 2018
Thank you moecam. She wears adult diapers - has for years.
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Oh dear. Oh, dip. The famous “promise” to never put a LO in a facility. The promise that is a ticket to a round the World guilt trip that could last the rest of your life. You’ll be traveling with burnout, depression, exhaustion, confusion and sadness among others.

Peeing in inappropriate places is not a reason (yet) for putting her in a facility. Is it possible she’s confused and doesn’t know if she should just wet her Depends or sit on the commode? I’m fearful of uncarpeted floors. When they’re wet they can become nasty slippery. There are very large rubber mats available st office supply places and home improvement stores that can be mopped up and Mom wouldn’t be able to move it.

Trust yourself to know when its time I have confidence that you “got this” for Mom.
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dlpandjep Sep 7, 2018
Thank You!!! The rubber mat is a brilliant idea!

Yep - I'm on that trip. Do you ever experience depression or anxiety while caring for your LO? How do you cope? Forgive me if I'm being too personal.
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If she already uses depends at night, there are some anti-strip pjs that she could wear that would keep her from removing the depends.

https://www.silverts.com/alzheimers-clothing/
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Stilltired Sep 10, 2018
I too, used anti-strip pjs for my mother-in-law as she would urinate everywhere.  Once I purchased the back zip pjs this stopped.  Every evening I took her to the bathroom and then bathed her and got her into her overnight depends and then zipped her into her pjs, she loved them - they were snug and gave her a sense of security.
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You’re abdolutely doing nothing wrong!!!
mom sounds as if she’s lost the capacity to comprehend the logical steps to toilet herself. It’s nothing you have any control over.
Try incontinence pads or depends underwear. Instead of pads on the bed, try putting a waterproof mattress cover, OR put the pads under the sheet.(it won’t save the sheet, but it’s better than nothing)

ive taken all dad’s undies away and replaced them with depends. The only problem, is dad wears them for DAYS at a time. They end up completely saturated and dripping. He refuses to change, and soaks everything he sits on. I cover everything with plastic and towels, and sometimes “show him” the wet towel to get him to finally change. My next step is a home health aide who might be able to get him to change at least once a day!
Good luck!
Unfortunately, this situation doesn’t get better. Once it begins, it spirals downward..... but, it’s not your fault!!
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robinr Sep 10, 2018
My thoughts and prayers are with you.  This takes patience and love beyond my capabilities, and I hope we never get to this point with my mother who is at home.  Our relationship has always had an antagonistic edge and I cannot see myself as providing personal care like this.  She is argumentative and combative enough when my father suggests showering.  But he cannot stand odors...so if she did what you've got going on...I don't know what he would do...
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dlpandjep,
When my mom became incontinent, we encouraged her to stay in the bed during the night. We would definitely decrease fluids at night, but be careful to increase them during the day to avoid dehydration, etc. Then, every night before bedtime, we would let her stay on the toilet to empty her bladder well and tell her “sleep well and don’t get out of the bed because we don’t want you to fall.” (When they become disoriented to do things that lack common logic, then they become higher risks for a fall.) My mom’s caregiver encouraged me to train her and just keep toileting her well before bedtime and keep reminding her every night to stay in bed. Mom wore depends and we used a washable urine pad and sometimes used disposable ones. Anyway, she listened and stayed in the bed! This way, we rested well and she did too. The only thing was that she would be soiled in the morning but we would bathe/change her clothes in the morning. Hope that helps you!! His Blessings to you and your family!
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dlpandjep Sep 10, 2018
Thank you for your ideas. Mother is a very good sleeper, and does well most of the time. I took her to the local clinic last Friday and hopefully I'll get a "clean" urine sample soon. I do use the heavy bed pads and have a mattress cover. I've reached the point that, whenever she's missing, I know something's wrong. Just need to keep up with her. She moves well.

Blessings to you too!
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