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Out of the blue, my mom has developed delusions. MRI didn’t show any dementia. But she insists there are intruders stealing her clothes and a comforter. A man spraying them with invisible spray. She just got out of the mental health unit and they said they have done all they can. She has my stepdad driving her to the hospital and her drs office three times today insisting she has cancer and needs surgery. Wants him to now drive her to the University hospital.

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I know this may seem trivial, but I would check two things if it hasn’t been done yet.

1. UTI
2. TSH levels.

My bride of 31 years suddenly became ill with delusions and hallucinations. What proved to be Alzheimer’s was suddenly onset by her TSH going to 15.4. Normal is 2.5-4.5. We got the thyroid under control but she never recovered back to a normal lifestyle of fairly clear cognitive thinking. We believe Alzheimer’s was already in place but again the TSH going off kilter like it did only magnified what was present.

As for a continuing care community, it is VERY expensive. We are fortunate that we bought LTC insurance years ago. If you have it, use it. If not, moving her assets into a trust and placing her on Medicaid could be an alternative. But be careful. Many places that take Medicaid are nothing but piss holes.
Seek help from a financial advisor. I use Edward Jones.
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This llustrates very well why my husband and I who are in our early 80s have agreed not to seek treatment if we should come down with cancer, etc. It will never get better so why drag it out only to make it unbearable for ourselves and ohers?
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Riley2166 Mar 2022
Bravo - my feelings to. I believe in humane euthanasia and if that is not possible, then I know what to do. No one should suffer like this - this choice belongs to the heart and soul of those who are ill.
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Am only going to address the affordability part of your question, and not the health issues.

People afford Assisted Living because either:
They're wealthy. Or their family has wealth.
They have multiple retirement checks coming in.
They've owned real estate that has appreciated in value and they can sell it and pay for the Assisted Living with their equity.
They own rental properties. They own stocks/bonds, etc.
They own businesses that they can sell for a hefty profit.
They have extensive savings accounts that have grown over the years.
etc ...
And, I've heard that a few states - Medicaid will pay/partially pay for Assisted Living, but I've yet to learn which states those are even though I've searched for the answer.
And, it's possible that some insurance policies they've bought in the past cover LTC (long term care) but, I don't think that's so common any more.
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imout01 Mar 2022
In other words, lots of people, who’ve simply worked a regular job and their offspring, who may have also simply worked a regular job, are often screwed.

You can wind up, in your 50s, as an example, trying to earn your own retirement, all to find that you “no longer need to work”, because your mother and/or father now need care. So, between what they don’t have and what you don’t have, it’s a sinking ship and everyone’s life is finished.

Hated to put it that way, but lots of people have found themselves in this situation.
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Unfortunately for most, it's done by planning sensibly for retirement and understanding that "retirement savings" doesn't only mean money to pay for Alaskan cruises.

I think most people think their retirement money -- after the cruises -- is meant to be left to the kids as an inheritance. Convincing those who earned the money to spend it on themselves is often the hardest thing to do.
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Sighopinion Mar 2022
In truth that is how family wealth has been done, passed through generations in the form of property and  inheritance.
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My psychiatrist dad once said delusions can be improperly titrated meds.

”Titration is a way to limit potential side effects by taking time to see how your body will react to a drug. In titration, the medication is started at a low dose. Every couple of weeks, the dose is raised (“up-titrated”) until the maximum effective dose (“target dose”) has been achieved or side effects.”

Maybe it is a side effect to anxiety meds — and if yes, you need a psychiatrist whose forte is meds.
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Start with a full physical by her primary care provider to rule out infections, blood chemistry problems, low oxygenation... Get those problems under control.

Next, evaluation and treatment by a neurologist for dementia. Each kind of dementia is treated a little differently.

Last, geriatric psychiatrist evaluation and treatment for mental health issues - like anxiety, delusions...

Once those are all addressed, family can address whether or not you can take care of her at home. If her needs are greater than the care family can provide, then it is time for residential care.
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SusanHeart Mar 2022
You nailed it Taarna the neuro psych and a neurologist will be the first step in determine what is causing the hallucinations and paranoia episodes. The neuro will be able to request blood tests and psych evaluation to determine best what is going on including drug side effects.
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I wouldn't automatically assume she needs MC. You said this is "out of the blue" and an "MRI didn't show any Dementia."

IMO, nothing is out of the blue, it's triggered by something. An MRI has ruled out your biggest & most expensive fear (good for you on getting that done).

This sounds like a simple, but very common UTI that will cause delusions if not caught early which is the trigger for me that mom has another UTI.

I insist that she is tested every six months by her PCP. Even when she has a phone appointment, I have a urine cup & sleeve at home. I refrigerate it & drop it off at her PCP's office the same day & pick up another cup & sleeve for the next time.

Also, take control of her medications. Make a list & put it in your wallet, learn & understand them, write down what they are for, the dosage, the side affects.

Best wishes to both of you.
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my2cents Mar 2022
Exactly - nothing is really out of the blue. Infections, changes of meds, etc create the very problems described here.
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The answer to your question, it's not easy if you haven't planned and saved for the expense. My mother moved into Assisted Living and we sold her house and used that money and her savings to pay the fees. I was getting ready to apply for Medicaid on her behalf when she died.

Its important that people understand that Medicare does NOT pay for Assited Living or Memory Care and only short stays in Skilled Nursing Care. Most AL and MC facilities don’t accept Medicaid waivers but may reserve a few rooms for residents who have lived there for 2 years.

Medicaid is a program for citizens who have no resources, no savings, no assets. If you own propriety, have investments, life insurance, etc you are expected to use those resources to pay for your care. When that money runs out then you can apply for Medicaid.

Each state has it's own rules but provisions are in place so the other spouse is not beggered or homeless. If a home is owned jointly the spouse can live in the home, but if he/she moves out and the home is sold, part of the proceeds may need to be used to pay the state back for the Medicaid received.
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MRIs rarely show dementia, only Alzheimer's which sometimes show up as plaques in the brain. Not always, either. Has mom been given a MoCA or SLUMS cognizance test to see where she falls on the scale?? If not, dementia CANNOT be ruled out! How has the mental health unit in the hospital 'done all they can' if mom was released STILL having 24/7 delusions of this magnitude? I don't understand that? No meds/no advice, you're on your own here? Even if you had the funds to send mom off to a Memory Care ALF, the concern is her well being and to get these delusions under control, b/c she'd still be suffering terribly in the ALF!

Assuming your mom was tested for organic issues such as UTI or other infections, has she been to her PCP for a follow up? Like Alva said, a referral to a neuro psychiatrist is a good idea, and that would come from her PCP.

In the meantime, your stepdad shouldn't be driving her on a wild goose chase to hospitals b/c obviously, no surgeries are going to happen! At the very least, a mild sedative s/b prescribed to calm down her agitation once her PCP is notified.

I wish you good luck and Godspeed with a very difficult situation, and pray that that a solution to this dilemma is found in short order.
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What was the diagnosis from the mental health hospital? Get those records and talk to social worker at that hospital to find out what is available in your area. For the most part (with some exceptions) memory care is a self paid facility. If the only income is Medicare (not to be confused with Medicaid), mom will probably only get regular nursing home bed - based on income could be eligible for a Medicaid bed or would be self pay.

Has she been checked for urinary infections? Commonly cause the kind of psychosis that you describe. Or you may already have the real diagnosis. Either way, return to one of the drs who treated her in mental health facility to find out - what do we do with her at this point....is there medicine, treatment, or what. And as that dr what kind of facility would be placement for her. The University hospital may actually do more tests on her for this mental break - and that facility is where the research happens. Be sure to get all medical records to them prior to the visit so dr knows what direction to send her.
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