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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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You are ahead of yourself. You say "out of the blue" so step one is a urinalysis with a culture. Step 2 is a full workup with her MD physically and a referral to neuro psyc.
As to affording memory care? Without a lifetime of saving hard very few can afford it, which is why most seniors spend their last years in a nursing home. When the time comes don't forget to consider Board and Care facilities.
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Shell68 Mar 2022
She signed herself in the mental health unit at our pleading. She thought they were just going to adjust her medication. Since we were hoping that she was just reacting to the anxiety medications. She had extensive blood work, urinalysis, MRI. She was seeing a psychiatrist so I’m sure they tested cognitive ability, but no idea. She passes all the initial dementia questions. She knows who she is, who her doctors are, the date, President, political issues. Etc. She hasnt even been home 24 hours and she insisted on going back up to the hospital because her doctor called saying she has cancer. She claims she has teleconnect, which is a phone in her head. Stepdad took her to the emergency room and she got impatient and walked out and he took her home. They will be back a few more times. I have seen the pattern, for two weeks ago.
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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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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 dementia and ALZ care are extremely expensive, and options are not readily available for most. The facts are as long as care is tied to being profitable quality care be far outside the reach of many. This is also why I think SNF / NH's are so overcrowding those with fewer means are forced to use SNF / NH long before they are ready and with the behaviors associated with dementia and ALZ it makes it nearly impossible to keep up with the care at home while still maintaining ones own life. Many of us are forced to pass a bulk of the care to the system, and the system itself is not equip to handle such care on a large scale.

System has to cut corners, do things they are not meant to do because it is a simple numbers game, we do not have enough resources to meet the demand of the growing population of those with dementia and ALZ. It will only get worse many people do not take the steps either because they cannot for choose not to prepare for the future. This is what I feel fuels the cost of MC.

Know you did not ask, but the topic hits close to home cause I first hand am seeing what happens when a family makes the choice to live in the moment and not prepare for the future.
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Worriedspouse Mar 2022
Isn’t Alz a type of dementia?
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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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Whether related to dementia or not, your mother is exhibiting a classic sign of psychosis with the delusions (thinking things are real when she's not).

Did the hospital discharge her with no meds, such as Seroquel? If not, why not?
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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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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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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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Plan and save is the way to afford the care you need. Work as long as you can. Be financially conservative. Buy long term care insurance. If you inherit money save it. Buy a house in a good area and in later years sell to help pay for your care.
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Definitely look at what medications she is taking and consult with her doctor. She may need a specialist in medications for psychotic states. While she is mentally capable of making legal decisions make sure all of her paperwork is in order. She needs to have a living will with her medical directives if she becomes incapacitated, set up powers of attorney for medical and financial matters (will you be her POA?), have a will if she has assets. Usually couples do this at the same time. You may need an attorney to assist. It's good to have backup POAs if the first ones are not capable. The POAs should also be on file with Medicare and Social Security to be able to speak on her behalf. This can be done with a phone call with her. Most financial organizations also have their own POA forms. Good luck to you!
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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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To answer your question, a lot of people can’t afford it. Some have long term care insurance and others have savings. Or it’s paid for from a child’s working income. Finally I believe there are some government programs that help pay a portion of the cost.
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Get your pharmacist to check her meds. One of the side effects of one of my medications was intense dreaming, nightmares and delusions. I changed meds and all was well.
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Most MCs are private pay. Those that accept Medicaid are terrible, at least the ones I visited in the Washington DC area. They are dark and smelly.
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babsjvd Mar 2022
Not all are… I’m fortunate to have my mom in a memory care, they asked for a year self pay, I was upfront and said she won’t make it, but would be close, they accepted her. We are looking at Medicaid starting in about 3 months… She lives in a small facility that is clean and she is well taken care of … in Wisconsin .
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I agree with others, my husband had similar which developed quickly last September. Have her TSH checked right away, also B12 and Folate. I was finally able to get my husband into the doc a couple weeks later, and doc ran these blood tests and hubs has been on Levothyroxine & Folate supplements ever since. Doc thinks he also had a possible UTI or infection that created his delirium and said if it happens again, call him any time of the night or day.

Good luck!
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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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Has she started a new medication? If so, check to see if these could be possible side-effects. That is what happened to my mother. Ten days after her meds were discontinued, the problem when away. Good luck.
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There may be resources if she or her husband was in the service. Many of their generation were included in the draft. There are also resources for home care. Check with your area Senior Resources (county or city will know about it). It does vary with location. Good luck.
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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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Shell68: Perhaps she needs a medication check as some medications can manifest into hallucinations.
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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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If the visit to University hospital is feasible, let her go , even if it means fibbing to her that it is to check out her cancer. Make sure your dad has a list of her current medications (include dosages and when given) and have him list her current delusions along with dates, times, how long after medications, etc.

If you are in the U.S., a good place to start with would be an appointment with an Internal Medicine or Family Medicine. When making the appointment, the reason for the appointment can be that she is convinced that she has cancer. She will receive a good check-up and the family can bring up her mental issues can be addressed and she will probably be referred to a specialist. The more details the family can provide about her 'episodes', the easier it will be to point her to the correct specialist.

Best of luck.
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Yes as another post mentioned.....extremely important to check for UTI and also TSH but dont forget free t3 and free t4 levels along with the tsh. Also extremely important to check if any of her meds have this as a side effect. Has she recently started any new meds??? Dont let any dr's tell you these things are not important as they are VERY serious and important. She knows there is something wrong with her but cant figure it out because it is affecting her mentally. This may certainly be why she is insisting to go see the dr's. May God Bless her. Please give her lots of hugs. Please dont just put her someplace without checking any and everything that it could possibly be. She will feel abandoned and will just go downhill very fast. In my opinion any of these places are the absolute worst places for our loved ones to be. They do not get the care they need and no one will try to get to the bottom of it.
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What does “all that they can” mean? If there’s no answer/solution, then they have not done all that they can! She may have just lay in bed for max number of days so they get paid & did nothing…. Take her to Internist to check urine & blood & meds. Then take her to neurologist. I would get report from mental health center what tests were given & Dr contacts so neurologist can call to verify. Get second opinion from a specialist. One thing you know for sure…she is not right…something is brewing/wrong…Hugs 🤗
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