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My mother on 24/7 oxygen, but loves her home,cats,books. In last 6 months her incontinence is so severe I cannot keep up. Nurses will come once or twice, then resign because of "feces on the floor." She is 85 years old. Twice she has been placed in very nice Assisted Living places, only to return home after hundreds of calls to daughters, friends that she will commit suicide, etc. I have hired a home cleaning service with heavy equipment for floors, but my sister - an RN - insists she must go back to assisted living. Sometimes she will wear heavy duty Depends, sometimes she forgets or chooses not to. The worst part is the devastating affect of this incontinence psychologically. Do I keep her home or put her back in Assisted Living where she descends into depression?

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Does she have dementia? Does she totally comprehend what you say? If there are memory problems, and lives alone, she probably needs a memory care facility. Assisted living means you need a little help, but I doubt it would include taking care of her diaper and potty breaks all day long. Others on this site may be able to tell you more about that.

If she just has accidents from time to time, that's probably why she does without the diaper sometimes - might be uncomfortable and thinks today things will go okay. If there is no memory issue, then you need to have a talk w/her. Has to wear the diaper 24/7 now or move to a facility where they can help her. -- The only thing about this is: imagine having a mess in the diaper; will she be able to get it off by herself and get her entire bottom clean?

If this is the only issue remaining in the home, see if you can get some care givers to go several times a day. You might be able to find a couple of people to spend a good part of the day with her versus going to facility. Maybe 7am (or her wake up time) to 11 for one person. 3-7 or 4-8 for the second shift. First shift does am diaper change and breakfast - ck diaper before leaving. Prepare lunch and exit. PM shift can do a mid day diaper check, a little housework, prepare supper, put on the nighttime diaper and exit. She may very well need full time care in the daytime. . .maybe night, too. You would be a better judge of her overall needs.
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Reply to my2cents
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Just wondering: what is causing the incontinence? My mother has chronic constipation over the years which led to her needing to digitally assist her bowel movements. Needless to say, her lack of complete hand washing and smeared bed linen were the horrific results.

Does your mother lack control over her bowels or is she unable to clean herself after having a bowel movement?
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Reply to GAinPA
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AL is the only answer if she cannot clean up after herself. She wont commit suicide, or anything else, she will moan to those she knows and make friend in the facility. It took my mother 14 months and about six months of the pandemic to get the idea she was safer and better off where she was - plus of course no one listeng to the moaning and simply changing the subject or telling her there is no option we are all locked up at the moment. She still says she is leaving every now and then but knows she isn't and that she cannot manage alone but it is frustrating to loose independence. The worst thing to do is keep swapping between in and out of AL because then she will think there is an option and carry on. Just try and ignore the moans, ask if she can clean up, and rapidly move on. There is nothing to feel guilty about in this, she needs the care and you will be doing your best to provide what she needs in the most suitable dignified environment.
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Reply to TaylorUK
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Just in case it helps : “Everyone” insisted that my brother needed a bedside toilet ( we placed it over the regular toilet) for safety.
He used the trash can, the corner, couches and chairs....anything but the toilet. It was awful.
We had to purchase bed alarms and cameras and place obstacles to protect furniture and spots between furniture and walls.
We took away the bedside toilet and he used the regular toilet.
Dispite our attempts to explain, apparently he could not recognize the setup as a toilet .... especially during the night.
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Reply to Jo123456
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How about hiring a health aide or several so they can be with her 24/7, changing her pull ups & keeping everything clean? Agencies are expensive but if you use a site the aides make more when paid directly but are still 1/3 of the cost of an agency. I recommend the background checks & be sure to screen them well & interview them before meeting & giving out your mother’s address. But after you do all that, there are some very nice caregivers there.
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Reply to Kelkel
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Your mom has dementia. She should not be in Assisted Living she should be in Memory Care.
I would check with her doctor to diagnose the cause of the increased fecal incontinence. BUT if it is incontinence that is part of the decline. Bladder incontinence usually comes first then fecal incontinence.
If you wish to care for her at home just realize this is part of the process (unless there is a physical, medical reason) and YOU will have to make sure she uses incontinence products. And YOU will have to get her to the bathroom about every 2 hours (standard) and change her and clean her if necessary.
If this is not something you want to "sign up" for then place her in Memory Care NOT Assisted Living. This is no longer a choice she can make, she can no longer make competent decisions for herself.
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Reply to Grandma1954
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keepingup Jan 17, 2021
Thank you. I am looking into Memory Care. She gets extremely agitated away from her home, but I think they would be understanding. The living situation cannot continue.
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Dear Keepingup - You said that her fecal incontinence is so bad lately that you cannot keep up. Have you contacted her doctor for a visit to see if there is a medical cause? Something called ‘C diff’ can make fecal incontinence much worse. Also, like another person mentioned, has there been a dietary change? My LO’s fecal incontinence has been made worse by carbonated drinks, beans, Boost drink, citrus, etc. Has there been a medication change? Dealing with fecal incontinence is very difficult even under the best of circumstances (I know from experience).

Regarding suicide threats, although it may be just for effect (to get back to her home) or it may be unlikely to happen, I understand your concern. A dementia patient at a local residence got ahold of cleaning supplies and drank them causing her death. I agree with the other person here who suggested the assistance of a psychiatric practitioner who may be able to provide something that would be helpful.

I wish I had better advice for you. Sometimes there is no good solution — only the best one you can make at the time.
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Reply to PAH321
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my2cents Jan 31, 2021
PAH321 has some good advice. What you eat definitely changes your bowel habits. Meds, too. C diff can be checked by the dr. If you aren't around mom much, go spend some time to figure out what she's eating. Check pantry. You might find the culprit. Lots of chocolate, candies, can play heck with your stomach even if they didn't in the past. If nothing looks suspicious, dr visit.
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Your Mom has a Dementia. Its no longer what she wants but what she needs. She needs an AL or NH. Don't give her a phone. She needs to learn to rely on the staff.

For the other problem. I cut out Moms coffee and apple juice. Taking them to the toilet every couple of hours. Finding the time she usually goes so she can be placed on the toilet. And what kind of aides (I doubt you r hiring LPNs or RNs) can't deal with cleaning up feces?
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keepingup Jan 17, 2021
I have had 4 Registered Nurses here. They assured me they had experience both with incontinence and a challenging personality. The longest one lasted 4 visits.
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You have gotten good advice from the others so I'll just offer some practical advice - take all her panties out of the drawer and replace them with Depends, then there is no forgetting or choosing not to wear them.
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keepingup Jan 17, 2021
Thank you, I did just that. You are all so kind.
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Sometimes we have to make choices that are painful and it seems there are really no 'good' solutions.

You keep mom home and deal with what is not only a nasty, smelly, unsanitary condition, or move her back into a facility that can have eyes on the situation 24/7, thus allowing hopefully, for a better management of the problems.

Is mom AWARE she's making messes? Or is she just out of it, enough that it doesn't bother her? If it doesn't bother her, that's a sign that she's really not capable of making decisions of a most basic nature.

She's using the suicide threat to scare you all and it's working. Mother did it for years and years...until it totally lost its sting.

The unsanitary conditions of feces on the floor is a deal breaker for a LOT of in home aides.

You said the psychological aspects are the worse part of this--is she aware of the incontinence or is it you and Sis who are being affected?

I hate to say this--but fecal matter is all but impossible to totally remove from carpet. If you are all-hardwood/linoleum/tile you can get pretty sanitized--but how many days a week are we talking here? Everyday? 3 times? You and sis are the ones who are really suffering here. The fact that mom is CHOOSING or forgetting to wear the Depends makes me think she is unaware of the possible outcome.

I'm maybe going to be in the small group of people who would find this a deal breaker for mom to continue to live 'independently'.

Maybe you can find a NH that allows her to have one of her cats and of course, she can have her books.
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Reply to Midkid58
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keepingup Jan 17, 2021
Thank you. Her "accidents" are daily and she is very aware that they are happening. My sister believes like you she should be in Assisted Living or Memory Care. I clean up the best I can when she is sleeping because I know she is embarrassed. I have MS and don't do the best job, that's why I have a professional floor cleaner in here when possible. The one constant in all responses, for which I am grateful, is that when doing the absolute best you can is not enough - it is time to change something.
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You have two questions, how to deal with the fecal incontinence and whether or not to put Mum into a facility.

If Mum is having diarrhea, have you looked into dietary or medication triggers? If she has regular stools, but no control over her bowels, then she must wear depends. If she is to the point where she forgets to wear them, then someone needs to be with her to ensure she dresses appropriately.

If Mum is relieving herself wherever she happens to be, ie drops her drawers and poops, then that is a strong indication that she needs 24/7 care.

You have not mentioned how long Mum was in the AL before the family caved to her demands. Remember she is demented, she is not capable of making rational choices.

How was she going to commit suicide? I know her making those statements is traumatic for you, but in reality could she follow through? I cannot remember which poster here said her parent threatened to jump out their window, they lived on the ground floor.
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Reply to Tothill
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“Hundreds of calls” are NOT a good reason to make life choices that impact on care giving for someone who needs 24/7 care.

If she is at “suicide risk” (mine was), a psychiatric assessment is ESSENTIAL. Our AL has a psychiatric specialist on call, and just yesterday I attached a note to a co-pay bill, telling her how much I appreciate her ongoing help.

When she entered my LO was on 24 hour escape watch. She had been depressed at home, and of course continued to be. The psychiatrist had a conference with me and together we decided to try small amounts of antidepressants and anti anxiety meds (introduced slowly, NOT all at once) but with time, my LO once again became her lovable cranky self, and adjusted much more comfortably to her surroundings.

Your sister is right. Seek out the best in ALs, be sure they have access to psychiatric care, then let the staff address her care. Hug her, tell her you’ll visit frequently, then LEAVE. I was willing to take calls, but only answered every other day or so.

MUCH HARDER for family than for our LO, but much MUCH BETTER FOR HER than what had happened before she entered. Hugs for all of you. STAY STRONG.
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