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I have one brother who lives in Florida...I and my mother are in N.Y. He says he can't take her in and I realize that I cannot do so either. She says that she refuses to go into a NH, nor does she have the assets to cover a NH. Or AL. What should we do and where might my mother be placed given the situation?

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Besides a possible UTI, her symptoms could be from over- or under-medicating herself if she's on any prescription drugs, or she's taking OTC meds for sleep or pain. Dehydration can cause those symptoms too. I agree with BarbBrooklyn that she should go to the ER. From there you may be able to talk to a social worker and get some guidance about what her immediate options for in-home care are. In the longer, she will need a DPoA or guardian if she continues to be cognitively impaired enough.
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You can't bring yourself to follow through, you say, yet mom lives alone with incontinence and dementia to the point where she's hallucinating. It's only a matter of time before a catastrophic event occurs and then things will get very ugly in short order. You don't want that to happen, so step in now before it does, that's my suggestion. Yes, it's hard to take action, but it's worse to take no action and let something horrible happen instead. This sounds like an emergency situation that's going on and one that demands immediate action.

Go speak with an elder care attorney right away! I assume you filled out your profile accurately, stating your mother is 63 with dementia, incontinence, anxiety, hearing issues etc. I also assume she does not have a simple UTI and that things are further along than an antibiotic would fix. An EC lawyer will walk you through your options in terms of Medicaid, what her assets need to be to qualify in NY, and how to get her approved for long term care in a Skilled Nursing Facility. That's your first stop and your best bet, in my opinion.

You should go and see mom and spend some time with her, get her to her doctor for medication to help her with the hallucinations for now, and get the anxiety under control. You need to get an accurate appraisal of what exactly is going on. Being 3 hours away and having her begging you to go see her is a bad situation that needs attention. "Refusing" to go into a nursing home isn't open for discussion right now; her safety is the only thing that matters.

Once you get her calmed down, then you can sit down with the attorney and get your options sorted out, the information given to you, and plan in place moving forward. You can even hire someone to help you thru the Medicaid application process if you feel overwhelmed by it; I had someone lined up to help me for a cost of approx. $1500. She would submit the app and follow it thru the whole process FOR me. That's not necessary, but it does help with the stress of the whole thing. My mother wound up passing away before I had to apply for Medicaid on her behalf, and she was able to private pay her way in Memory Care Assisted Living for nearly 3 years beforehand.

Wishing you the best of luck with all you have to deal with.
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I agree with having her checked for a UTI. Do not settle for a simple urine test, get the culture done. It will take a day or two to get the results and if the she does have a UTI, they will know which organism it is and can treat with the appropriate antibiotics instead of a broad-spectrum antibiotic.

But I think your very first step is to talk to her doctor and ask for an appointment --and accompany her to that appointment. Has mom given her doctors permission to discuss things with you? If not, you should have that done asap with each of them. You need to be in the loop. Her doctors can advise next steps for her and perhaps have knowledge of services in her area that can begin helping her now.
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You need to contact a state elder care social worker or your local Agency on Aging. Tell them your mother is at risk. Your mother will need to (eventually if she has progressive dementia)) be placed in a SNF paid by LTC Medicaid. If you can't or don't want to handle the responsibility of placing her, which involves applying her for Medicaid, you need to get a social worker involved ASAP. The social worker will visit her, determine if she's a danger to herself and if so, find a facility for her.
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Perhaps a to-do list will help.

Write out the suggestions given here. Draw a little circle beside each item.

Do ONE item each day. Just one. Trying to tackle a whole list is too daunting.

If I were making this list, I would start with ruling out a UTI.

After accomplishing an item on the list, color in the little circle that you’ve made next to an item. That step will help signal your brain that you’ve indeed made some progress. Maybe a different colored crayon for each item. Then, you’ll really see how far you’ve come.

It’s soooo difficult to start, when we’re feeling overwhelmed ourselves. But, you can do ONE thing.

We’re cheering you on. 🙂
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See elder law Atty virtually. They will create a plan of action for her. Are you able to tour a facility nearby you..so she can move there? She will probably need to be evaluated in hospital before she goes to SNF (skilled nursing facility). Make sure you contact her PCP so hospital takes her insurance. Because of Covid, the 3 day hospital stay is waived. Then you can be advocate. Medicare pays 100% days 1-20. Then 80% days 21-100 unless you have a Medicare supplement that includes SNF. The copay is $194 a day. AARP members can get supplemental plans. Get ball rolling with having consult with elder law Atty. You need to get some papers together..like 5 years bank statements. Put the first foot forward & then it will be easier to follow through. If she has little assets or no house, perhaps Medicaid office inside SNF can help apply for Medicaid. If she does have house, elder law Atty can help file nursing home application. Hugs 🤗
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A bit more about Urinary Tract Infections, remembering that recently I talked to a friend age 80 who still thought that they were caused by sex. They are caused by cross infection from Ecoli in feces. In young people that can happen in vigorous sex, and it can then be screamingly painful. In elderly people it comes with incontinence - dirty knickers and back to front wiping. There is virtually no pain, but it affects the brain (I still can’t understand this). My MIL was in a NH, and they finally convinced my husband how common it was – 'we always check your mother when she starts going away with the fairies’. It’s a great pity that there isn’t more understanding about this. I guess that both vigorous sex and incontinence are neither great topics for conversation.
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Breaks my heart to see people as young as this having dementia, etc. I am 66 and still doing OK, altho my kids think I'm decrepit :) Jokes on them, they are in their mid forties and late thirties and starting to have achy joints and health issues. I just smile and say "yep, I know" when they complain.

Your mom can be qualified for Medicaid which you do need to qaulify for and it can take some time. Start now getting the process going. By the time she gets qualified, you may find that placing her in a care facility is really what was needed all along.

One thing for sure: if you do nothing, then nothing will change.
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Jaybop, it’s sad to learn that your mother is like this at age only 63. Welcome to the site, which has lots of information that is probably less stressful to start with than being in touch with authorities. Click on Care Topics at the top of your screen, then (for example) A for Assisted Living, and you will find lots of information articles as well as threads for discussions and questions.

Mother’s ‘refusal’ doesn’t work if she can’t get adequate care any other way.

As Barb says, check for a UTI about the hallucinations (I’ve bought a home preliminary check from the local pharmacy), and start finding out about Medicaid. If you ‘can’t bring yourself to follow through’, this might be the easiest way to begin. Knowing a bit more simplifies discussions later on.

Best wishes, Margaret
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If your mother is hallucinating, she belongs in the hospital. She needs to be tested for a Urinary Tract Infection, which can cause hallucinations.

Have you spoken to her doctor about this?

Have you considered calling 911 so that she can get checked out?

Have any of you looked into getting her qualified for Medicaid?
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