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I am my mother's primary caregiver. Since September of 2022 my mother has been refusing to get up to use the toilet. She rather sit in her own urine and poop. I will ask her if she knows that she's done it and she denies it. It's also a struggle to get her to get cleaned up. "I will after bit". The smell as you can imagine is like a septic backup. I'm also concerned with sores on her. She also refuses to get into the shower. She is able to walk but not very far or long. This is nothing unusual. My whole life my mother hasn't moved around much. I'm 42 now. Her doctor's and social worker are aware. She has taken mental health evaluation and MOCA cognitive test. Doctor says she has mild memory loss. When we ask her why she won't get up to use the bathroom she claims she doesn't know she's doing it and says she either gets dizzy getting up, gets nauseated getting up, her feet hurt, she's too cold to get up or she didn't get enough sleep and she'll clean up after she gets more sleep. Even when we get ready to go out I'll tell her she's dirty and she'll say she's fine and we'll clean up after we get back. If I make her get change, she gets verbally abusive (which she's always done my whole life when she's told to do something she doesn't want to do). She'll do it but not without a fight. She won't go into a nursing home and I can't make her because she's mentally ok the doctor's say. I haven't noticed any mental decline. Everything about her is normal except this and the silly excuses. I need suggestions. Thank you in advance.

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The ongoing battle of wills between a care recipient and a care giver.

My own mother would put out every excuse in the book to not let me get her into the shower. Usually it was "I'm not dirty", "I just took a shower yesterday", "I'm not going to do it", "I'll do it tomorrow", "NO". And it never happened.

So I took the bull by the horns and decided that this is a dictatorship, not a democracy. She now gets a shower when I decide, like it or not.

I hope that you decide that you're going to win the battle.

It's not necessary to allow your mother to sit in her own excrement and filth while stinking up your home. When you give in to her, you are only reinforcing her abusive behavior. Refuse to take her anywhere unless she's clean.

Peace.
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BurntCaregiver Apr 2023
@southiebella

Your approach is spot on. Sometimes it has to be a dictatorship. There have been times I literally had to put a client's hand in their pull-up and show it to them. Whatever works.
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Do you live in your mother's home or does she live in yours?
You mention a social worker; what role does he/she play in your mother's care? Who ordered the social worker to your home?
You mention bed sores. Are these present or do you fear they WILL be present? They can be deadly and must be prevented/treated.

The doctor has said your mom cannot be placed in care because she is mentally able to make her own decisions. That is nonsense. She is incontinent and unable to make any decisions about that, as well as about walking. She is clearly quite demented and needs a good neuro-psyc eval and diagnosis/prognosis.

Are you the POA? At present I hope not.
In short, you are getting no support and you are clearly now unable to take care of this woman 24/7 who is certainly incorrectly managed by her MD. When people aren't aware they have lost control of even the knowledge of having urinated and defecated they have serious loss, likely in the frontal lobes.

I would contact the social worker and tell her/him that you can no longer do this care. That you are leaving (if you live with her) on (provide a date) and will report your mother as a senior at risk with APS. You can ONLY do this if you are not her POA.
If you are POA call APS and see about getting her into care. They can assist you in resigning POA if you wish to do that. Were your mother without a child she would be in care. Tell APS you cannot physically or mentally now do this care.

If NEITHER of these things work then do the ER dump. Call EMS to have her taken to ER (any lie will do basically). There call in Social Services at once and tell them you cannot care for her anymore physically or mentally and that she must have placement. Do not accept her back into the home.

It sounds to me like you are down to DIRE circumstances and EMERGENT actions. That is why I have gone this far. I wish you luck. You are going to have to draw outside the lines to address this. You clearly have a miserably inadequate support system if all you tell us of it is true.
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Sorry but any human who prefers to sit in their own waste all day has lots more issues going on than "mild memory loss"! She can easily become septic from open sores while you wallow in the stench bc she "refuses" this that and the other thing!

It's time to find out her REAL MoCA score, get her properly diagnosed with dementia and if you hold POA, get her placed in Memory Care Assisted Living or hire carers to tend to her needs daily. Otherwise, you call APS and report a vulnerable elder who's not safe at home.

I never gave my mother choices in her care once her dementia advanced and her behavior became erratic. Leaving your blood and guts on the floor in order to accommodate her wishes isn't going to allow you to achieve the safety goals that are required on her behalf. You'll wind up depressed and anxiety ridden and then what?

Next time she refuses to be cleaned or starts acting erratic, call 911 and have her taken to the ER for evaluation, that's another option. There could be other issues going on w her you're unaware of. And some tough love may help her snap out of the fugue she seems to be in, too. My mother always responded to my tough love and we both benefited from it in the end. When she refused to shower, I discovered she was scared of the "slippery " shower floor in her memory care ALF so I bought her water shoes. That did the trick. Whatever the issue, resolve it for her (as possible) so the excuses have no validity to them. Head her off at the pass.

These words are not intended to be inflammatory or hurtful.....just to let you know you have the power to change a bad situation here! It's tough, but it can be done.

Good luck to you.
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BurntCaregiver Apr 2023
@lealonnie

You speak the the truth because you've been there. Sometimes, many times there has to be tough love with a senior. Especially when there's dementia.
I've been called heartless and that I lack empathy and compassion because as a homecare worker, I always got the work done.
Sometimes there has to be a little meanness. Or a little intimidation. It's far easier to recover from a little hurt feelings than it is to recover from a UTI, skin breakdown, or sepsis.
It's sad and no one wants to be hard, but sometimes it's the only way.
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So sorry to read this, but it is more common than you think and there are a variety of "reasons" why it happens. Do not give her permission to overpower you. There is a part of her that behaves like a rebellious teenager and that is what you need to address. Do not put up with the excuses. Be clear and firm: "Either you help me keep you clean or an ambulance will be coming to transport you to a hospital so someone could determine how to resolve this. The choice is yours." Drastic times call for drastic measures...wish you the best.
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BurntCaregiver Apr 2023
@modo

That's the way to do it. Either get washed and changed at home or in the hospital. Then from the hospital to the nursing home.
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First of all. Your mother has more than mild cognitive decline if she has no problem sitting in her own sh*t indefinitely. You may not have noticed any mental decline, but she has a serious problem. Either it's advancing dementia or she is mentally ill. Either way, she cannot safely live on her own anymore. Have you ever told her doctors who claim she's mentally competent that she will literally sit in her own mess and not even notice? That she gets abusive and there has to be a huge struggle and fight just to get her into a clean diaper? Seriously, I don't have much faith in her doctor if he's fine with her. Get her to a different doctor
She won't go into a nursing home? Yes, she will and it won't be her choice.
ZippyZee in the comments is right. Incontinence is the line in the sand that she needs to be in a facility. Even if you were to bring in homecare it would not be enough.
I was a homecare aide for 25 years and now operate a homecare business. I dropped a client from our service last week who was like your mother. She was nice but sat in her own soiled pull-up all day long. She would not get changed or washed even with help. She would not allow rotting garbage to be thrown away and her home is so disgusting that it's like a horror movie. She had three different aides and no one got anywhere with her. Unfortunately Teepa Useless Snow doesn't have a video on how to handle this kind of elder care scenario. I met with her daughter and told her that she cannot be allowed to continue living on her own and in such conditions. The daughter doesn't know what to do because her mother refuses to go into a "home".
You have to get tough on your mother. If she needs to be cleaned up do not allow anything else until she is. Don't feed her, don't allow any different topic of conversation. Wear her down. When she gets verbally abusive literally tell her that she's sitting in her own mess and it stinks. That you will not take her anywhere or do anything for her unless she cleans up.
It would also be a good idea for you to speak with APS. Many people are afraid to call on them because they think they'll get into trouble. You won't. They can help and advise you on what to do for your mother. Call them. They can also help get her placed.
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Incontinence is the line in the sand that she needs to be in a facility.
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I read your post and what you describe is what we have been experiencing with my mom verbatim. My mom is 84 with mid to late stage dementia, but has been incontent for the last several years. I'm my mom's primary caregiver and have found the best thing for me has been to establish a routine. I get her up in the morning, and the first thing she does is shower and get dressed, I turn the water on and escort her to the bathroom, I don't give her a choice. In addition, I put a Poise Pad in her Depends along with Desitin ointment to keep her skin in check. We try to get her to get changed in the afternoon to "freshen up" with varying degrees of success, sometimes she's fairly cooperative and other times she's not, I always say I "pick my battles." If she doesn't smell too bad, I have to be honest, I don't force the issue. If you are able to, it's okay to fib a little bit and tell her there's company coming or you're going out somewhere, this will sometimes give them the incentive they need. I can honestly say the saddest aspect of my mom's dementia has been seeing her the lack of awareness relating to hygiene. I've taken it upon myself to make sure her hair is combed, she's spritzed with her favorite perfume, and she looks presentable, nothing means more to me than her dignity. I'm lucky that she still loves going to her beauty salon, and they're wonderful with her. We try to do this every two weeks. I so understand your struggle and please know that there are so many people out there dealing with just this. I know how hard it is, and what it's like when they become argumentive and defensive. Always try to be patient, use a pleasant tone of voice, and reiterate how much you love them. I wish you all the best and God Bless you and all my fellow caregivers.
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BurntCaregiver Apr 2023
@Jim

It sounds like your mom is very well cared for by you. Please let me tell you something and it comes from 25 years as an in-home caregiver.
There's no such thing as 'doesn't smell too bad'. If you can smell anything, she has to get changed. Even being in a little piss or crap can cause all kinds of trouble. Anything from a UTI, skin breakdown, skin fungus, even open sores.
I always say,

If you smell something, say something. Then change them.
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Please call Adult Protective Services to evaluate her for placement: she is a hazmat situation. Dementia is not only mental illness. Change the doctor to a Geriatric Psychiatrist who can treat her many issues. Nothing about her sounds "normal," please let the professionals take over while you rest.

Please video her when she is in a heightened state so that she can't showtime!
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Tamtam80: Any 77 year old who prefers to sit in their own urine and poop does not just have 'mild memory loss.'
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Tamtam, I'm so sorry that you are going through this nightmare.

My mother -with dementia - was like this last year - I think she just forgot to go to the bathroom and eventually became incontinent with poop on the floor, on the chair and would refuse to acknowledge it. Like an idiot, I'd try to reason with her & get a migraine after cleaning her up somehow and then rushing to my job.
The day my husband cleaned up her mess was the last straw. I put mom in pullups and eventually hired an aide to take her to the bathroom. Shower was another battle & omg, the aide was a god-send as she took over.

I hope you find a solution - can you afford an aide for a few hours? Perhaps your mom will listen to a stranger and not to you. Your post brought back searing memories of last year, my 'annus horribilis" to quote Queen Elizabeth. (((hugs)))
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BurntCaregiver Apr 2023
@weary

I am sorry for your 'annus horribilis'. I know how it is.
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