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She’s been in a nursing facility because I had to call the police to find her pretty much incapacitated lying in her own feces and urine. Refusing to eat, or drink. She seemed to get better as occupational and physical therapy worked with her at a long term care facility. I trusted her enough to get her into an assisted living facility. She followed the rules for about a month and slid right back into her old ways. Assisted living is really for people who want to take care of themselves. She doesn’t. Period. She has been to the hospital for dehydration twice in 3 weeks. If it isn’t dementia what is it and how the heck do we fix it?

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What is her diagnosis? If she has not had a diagnosis, did she just agree to enter care? Unusual, that. She will not likely last long in ALF and they will ask that she enter memory care. You are looking at a need for assessment and diagnosis as the first step here. If you are dealing with mental illness there is almost NO WAY to deal with this. People with mental illness are almost never given mandated guardianship; they basically are on their own. Read Liz Scheier's excellent memoir about her (fruitless) attempts to help her mentally ill mom for all of her life. It is called Never Simple.
Start with diagnosis. There's no other way. Sure do wish you the best.
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You say she has been like this pretty much ur whole life. So I will assume here your Mom has somekind of mental illness. Likely depression that can manifest itself in different ways. She could be BiPolar and never diagnosed. My cousin is 66 and wasn't diagnosed until her 40s. Because she refuses to take her meds, she is very out of control. Dementia could be part of the problem. But you won't know until you take Mom to a Neurologist and he runs certain tests.
People who suffer from BiPolar have manic episodes. One day they will seem "normal" the next day shaving their hair off. Where I used to work we had a client that did that. Another time she gave away her furniture, another day all her food. Its not curable but it can be managed.

I am sorry if you feel like people are bullying you but you are asking a forum of mostly lay people to answer a question without any background. We answer from experience of being Caregivers and the info we are given. Sometimes there are assumptions because we don't have the whole story. We can only point you in the right direction to get help but we can't diagnose.
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Michele07 ,
you sent me a message and I can not reply to it for some reason so I am replying here to you.
There is a diagnosis called Failure To Thrive.
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So she's at the AL now? When was she released from the hospital the latest time? How does she return to the AL? Do you bring her back there?

Has the AL place started bugging you about her? Have they said that they feel it might not be the best place for her? Are they calling you all the time?

Are you her POA/HCPOA?
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Adult Failure To Thrive.
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To me (& my limited medical knowledge) I'd want to rule out
- stroke
- kidney disease
- diabetes
- liver function problems

Any of these can mess with cognition.

Unable to self-care can be behaviour displayed in many mental illnesses - severe depression being a usual suspect.

Sitting unable to eat, drink, staying soiled seems almost catatonic behaviour to me. Seen this a few times.

A thorough neuro-psych evaluation may bring a diagnosis, get you a 'label'.
But not always. Sometimes no label happens, things just don't work & no-one know why. Not all things have cures.

If so, then you move from Curing to Coping. To finding accomodation for Mom that provides care at the high level she needs.
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Have you assessed her for severe depression? It sure sounds like she doesn't see anything for her to look forward to therefore, not much of a reason for living.

Did she make any friends at the assisted living facility?

What did she do earlier in her life? Can you help her find some volunteer opportunities in that area? Are animals allowed at the AL? Maybe she needs just something to do....someone who is counting on her to be present. Can she help with the meals? How about joining a church group or volunteer sorting food at a food bank?
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Michele07 Jan 2023
She literally refuses to move from the couch she will hang up on you if you call her and she will yell at people who try to help. If I could get her to do anything like help another person I would . She thinks inside her own wants and that’s to be left alone.
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In my opinion, assuming she's "refusing" to eat and "refusing" to care for herself is a cop-out. No one does that.

She's elderly, she's declining, and she needs care. If she won't do physical therapy, it's likely because it's hard for her. Leave her alone and don't harp on her, but try to get her doctors to make an effort to figure out if she has something going on. Too many doctors write off their elderly patients and don't really care to try to diagnose an actual issue they might be able to treat.

The last thing you should do is blame her. As the others have said, no one sits in urine and feces by choice or stops eating out of spite. Until you can figure out what's going on, she needs the proper level of care, and perhaps she's beyond assisted living. Regardless of what happens, don't expect her to return to being fully functional as that rarely happens.
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Michele07 Jan 2023
ummm you don’t know the whole situation my mother has been this way to some degree her entire life and I’ve been there to pick up the pieces. She gave birth to me but I have been her mother my entire life. So stop your judgement. She’ll yell and scream at anyone who tries to help …how dare you say I’m copping out. I’ve been to hell and back. Leave her alone …that’s great advice lol
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Sounds like your definitely has something big going on. Has she seen her PCP? I assume they did blood work when she was in the hospital? It took awhile for my mom to get a dementia diagnosis. The tests don't test enough things, IMHO. She could really pay attention and do pretty well when she was trying. But once we got home and she let her guard down, she was confused and not remembering much of anything, etc. I think you should look at getting her to the doctor, with you there to share some truth and examples of behaviors, to try to get some sort of a diagnosis. Could be depression? Other psych issue? Or just good ole dementia. Regardless of what it is, you're going to probably need to adjust your thinking about your mom doing or not doing these things as a choice. I don't think she can help it. Get to the bottom of it so you know what's really going on. Poor mom and you.
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Michele07 Jan 2023
They give her the who is the President test and she passes. That’s all I know. She was evaluated in rehab and not given a definitive diagnosis. It’s like banging my head against the wall. At this point I’m tired of being judged by other people like above (not you) on this forum either for not knowing what to do with or for her.
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Sounds like mom needs a psychiatric evaluation because if she's passing a SLUMS test, then it's not dementia going on. If, however, she's answering questions like current date and who the POTUS is, then that's not "passing a dementia test" by any means. Lying in ones own waste all day and refusing to eat requires a psychiatric workup, imo, bc it sounds like mom is suffering from mental illness.

Good luck to you.
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I have no idea how to answer on this forum , I hope this is right. She has no official diagnosis I believe I stated. I thought that’s why she was acting this way but like her latest doctor said, she answers all of the dementia questions correctly… she was in a long term care facility and given medication for dementia but it does not say in her paperwork she has been diagnosed. She had a bad UTI before but none this time . She’s lucid when you talk to her and she will lie her way out of doing anything for herself. She will participate in physical therapy only when basically forced. She’s very crafty, she will say she fell when she didn’t to get them to bring her a tray of food that she won’t eat, instead of going to the dining area. I don’t think anyone believes me when I say she just literally won’t do for herself until she gets so weak that she can’t do it. And the cycle begins again .
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Why has she not yet been assessed and diagnosed, can you tell us? And as Margaret said, what was the action taken regarding the UTI?
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Your profile says that M has a UTI. Have you got that sorted out yet? In the elderly, they cause no pain but affect the brain.
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You say in your profile that mom has dementia, Alzheimer's, yet in your post you indicate that there is no diagnosis of dementia.
How did you place her? Do you have POA?
And I am surprised that during the time she has spent in the Skilled Nursing Facility and in rehab and in the AL facility that no one has given her a diagnosis of dementia.
Anyway....
With dementia she is not "REFUSING" to care for herself.
She can no longer care for herself.
Just like she did not "want" to become incapacitated, she did not "want" to be covered in her own fecal matter, her own urine. And she is not "refusing" to eat or drink. She maybe does not know the process to eat. If you think about it eating is complicated.
You have to cut your food up, or at least get cut food on your fork or spoon. (do you know what a spoon or fork is and how do you hold it?)
Now you have to get it to your mouth.
Now chew. this can be a confusing part.
Once you chew you have to swallow. (Pocketing is common with dementia so you have to make sure the mouth is clear)
Repeat these steps until the food is gone.
Many people with dementia need constant monitoring while eating. (Choking is common as is Aspiration that can lead to pneumonia)
Food has to go from "normal" food to cut up for them to minced to pureed. And liquids may have to be thickened
Eating and drinking is not an easy task when you have dementia.
And when someone can no longer feed themselves they must be fed.
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Michele07 Jan 2023
if they said she had dementia that would be different but her newest doctor says no . Maybe if everyone on here knew her entire backstory they would stop judging what I’m saying. There are people who refuse help because of paranoia and mental illness and I’m asking if anyone has dealt with someone who is presented food and water and will not eat or drink . There is such a thing as refusal
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