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Is there some way you can secretly put cameras into the room? Do NOT tell anyone - not a soul. Sometimes with dementia, they do act out and they have to be put in their place and controlled so they stop - well, good luck. Try to find some proof somehow and talk to other families and residents to get a feel for what is going on. With dementia, she is probably all messed up but it can't continue.
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With her history of not liking anywhere she lives, these new stories may be her attempt to get away from this newest facility placement. She would need to come up with some pretty dramatic reasons to convince you that this is a bad place. Dementia would skew her stories toward more and more exaggeration and paranoia.

If conversation is even possible, you might be able to tell your mother that "you'll look into it" when she describes some hooror or abuse by staff.

Your description of the home sounds wonderful. I hope yours is the more accurate picture.
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Yes with the dementia. Condition.like myself. It is part of the condition. I was meds for it ,to but it made it worse. There is no cure and there is no survivor. With it.here. is a website for dementia it is society america of dementia. They will help you and family a lot.if you anymore information just let me know.
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The more outlandish the "stories", the less likely I would believe them to be even remotely true. As others suggested, a UTI or other infection can wreak havoc. If they did a urine culture (dip stick tests can miss UTIs) and blood work, then those issues would likely not be the cause.

My mother's first UTI after moving to MC resulted in severe sun-downing. She was insistent that she had guests coming and HAD to go home! Not like your mother's wild scenarios, but clearly she was delusional. She set off every door alarm. They called me to come there, with me thinking what will I do? She's never had this before and was never under my care! By the time I could get there, they had finally gotten her into her room with a magazine. I let the sleeping dog lie. Sadly this started on a Friday evening and not one medical person was able to provide ANY help. We had to wait for Monday when she had an appt set already and staff had to deal with this every evening until then. She had to take an anti-anxiety along with the antibiotic, but only until the UTI cleared. Never had another episode. Subsequent UTIs showed up as night time bed wetting/soaking.

A move certainly can cause changes, usually negative, to happen. We often suggest moving someone to MC before it might be too late, as the move can upset the apple cart.

While they reported the situation is related to dementia, have they done enough testing to determine the underlying cause? Different types of dementia can result in much different symptoms and behaviors. It can also make a difference in what types of medications might work or would be wrong to prescribe.

Hopefully the staff can get your mother to take the medication. Many need to be taken for a given period of time before "good" results are seen, IF they can get her to take it for 2 weeks, but nothing changes, she might need something else. Hopefully they can take her into the psych unit and work on the right meds to at least tone this down.

It sucks getting old. It sucks having medical issues. But this whole dementia thing is just crazy! It would be nice if some research could figure out why so many are going down this path. Yes, age can be a factor, but it isn't the only one. Many people live longer lives now than in the past and they are fine. Some who end up with dementia aren't even really that old - a few who were in mom's facility weren't even old enough for SS!

p.s. As others said, there really isn't a "denial" of the condition so much as dementia lies to the person. Their self-image could be from years prior - I could tell from various comments and discussions that my mother was living her life from about 40+ years ago. I couldn't use the "D" word, as her idea of what that meant wasn't even correct. Mentioning the memory losses, she'd just say she's old and entitled to forget things sometimes. Sadly what's in their head we really can't know, but so long as we can safely do it, go along with whatever they say/think and distract/redirect their focus whenever possible to something better.
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cweissp May 2021
Yes it is hitting younger people. When I visited mom last week - mom was concerned they were moving people over from the SNC over to AL. When med-tech dropped off mom's meds I asked about it and was told that AL definitions are changing due to COVID. One new resident is only 61 - had COVID without severe symptoms but is now almost unable to move. Who knows what we'll be left with from COVID survivors.
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Yes I have similar experience…with the hallucination & delusions…
My 94 year old mother with dementia also on Seroquel but now I have to find new ways to crush & hide it. She’s been having these psychotic episodes…demanding to call police to look for my father (died in 1992) who she says went to work & never came home. Or call my grandma who died in 1998. Trying to escape from wheelchair &:or bed even though she can’t walk. Hugs 🤗
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Imho, my late mother was not diagnosed with dementia, but she did suffer from many U.T.I.s that sent her into hallucinogenic disturbances.
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Mom had delusions for about 2 years before she passed. She told everyone she was 112 years old. Swore it was true. She was born in 1929 and passed in December 2018 at the age of 89. She would tell me about the MC she was in and how she owned it and all the property surrounding it all the way to the highway a couple of blocks away. And all the houses and apartments she owned and the gardens she had planted and worked in every day.

She used to come to my home to gather pecans from my trees before she became ill and could still drive so of course, that became part of her delusions also. She would ask where was I the day before when she was here picking up all the pecans. Said I should have helped her. These stories were even told during the winter when there were no pecans or gardens and sometimes with ice on the ground outside her window.

She also accused the staff of theft and the other members in the MC unit. She did lose several things but, there were items in her room that were not hers. I took those items to the nurses desk to be returned. Never did find her other shoe. I simply bought an extra pair. Delusions are to be expected. My husband has began to talk about things that are not true or were not done. He gets violent without his meds. So, I make sure they are taken every day. And he did have a UTI at one point and it really wasn't fun. His dr asked me how I knew what was wrong after they got the test results back. My mom!!

If you are really worried, visit with some of the other clients and have casual chats with them. If it is bad there, someone else probably will mention it.
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I of course am not a doctor of any sort but I think these delusions can become their new reality. My mom continually says that my husband is mean to her, grabs her, yells at her and none of that is true. I think the real truth is she is jealous of him because he takes me away from her. She is also is delusional about people being in her suite - this has been going on for 3 years now ! She changed in the closet because the people on TV can dee her. My mom is also acting out. We are trying a medication but so far it has not calmed the delusions or aggression.
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roxynicole1 May 2021
Thank you for sharing your story. I hope you and your mom can find some peace from the delusions.
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PLEASE, let me answer this: Delusions can last months. In our case, at least one YEAR.

She believed she had a fiance. They spoke on the phone daily. She, of course, was talking to the dial tone. She would sing and croon to the dial tone, and sometimes argue with IF (invisible fiancee). Their imaginary wedding was coming up and she would ask me regularly if IF had called me to set up details. I would tell her no. She would scream at me for lying. If I told her yes, she would scream at me about the imaginary details I set up. I was getting screamed at, no matter what.

As the wedding drew even closer, the phone calls became long sessions of love songs. She shared the "I Love You" song IF had written for her. At this point, I had entered bizarro world. Also regular, intense nausea.

Wedding drew even closer. I asked for her forwarding address and she told me that IF had already told me that, IF was taking care of everything. I pointed out that I had not been invited to the wedding and she screamed at me for lying.

She was transferred to a rehab hospital which also had a memory care facilty on the grounds. She told me that late at night, a group of men gathered outside her window to drink and sing to her. Then she told me that IF (based on a real life, reputable, local, orthopedic surgeon) came to the rehab facility late at night. I pointed out that he was not on the sign-in book, but she told me that he owned the place. When he came in the evenings, they had sex. She was in love. I was now approaching insanity.

When I asked again about where they were going to live, so I could come visit, she told me they would be living on an entire floor of a hospital with his parents. My mother was 95 and she was going to live with somebody's parents????

Along with the main delusion, was the constant refrigerator story. Back when she was still in her fome, she needed a new frig. We went and bought a perfectly fine one. It was installed. But she wanted the fancier, more expensive frig that, more importantly, would not fit between the already build-in cabinets. Somebody had to be responsible for the fact that the fancy frig would not fit so that HAD TO BE HAPLESS ME. Mind you, I was a university professor, there is nothing hapless about me.

So, first IF bought the new frig and it would be delivered on day X. Day X would come and no frig. This meant long arguments with the dial tone. Then, she said that my ex-husband was bringing the new frig by and he would put it in. When no frig arrived, more screaming at me. Then, she would call me to thank me for buying the new frig and ask when it would arrive. She never, not once, answered questions about how to get a too-large frig between the built-in cabinets.

She proceeded to get sicker and I moved her to a nice memory-care facility. She hated it. But one day, she slipped off the 12 carat diamond ring that IF had given to her and asked me to hold on to it for safekeeping. I had it appraised and it came back as a JC Penney's ring, valued at $20 or $25. Once, I pointed out that she had purchased the ring herself, at Penney's, but of course, I was screamed at.

If I used logic, I was screamed. If I went along, I was forced to come up with more and more fanciful detail, and I did not want to play, so I got screamed at.

Want to know how it ended? She died.

Sorry, but this is true and if I had not kept my sense of humor, I would have needed multiple medications to keep me sane.
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roxynicole1 May 2021
Oh wow. What a journey you were on. I'm sorry for all you and your mom went through. Thank you for sharing your story. It helps me understand my own situation more fully.
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The short answer is delusions can last for a long time.
Do you know what kind of dementia you are dealing with? My mother had Lewy Bodies and the delusions and hallucinations were very real to her. Once she got an idea in her head, she embellished. She was convinced she was living with her husband and his brother - prior to going into the home. According to her they were out to deprive her of her property; that was why she was put in the home, being held against her will. At one point we were contacted about this by a deprivation of liberty team, she was quite convincing.
Apart from the fact that my stepfather's brother could not have been living with anyone as he was dead at this point; my mother was convinced they were both called Ian and the property she was worried about was a hundred miles away and had been sold 40 years ago. The thing was, because she really believed all this, she was believable too - until the right questions were asked by people who did not know her circumstances.
It is very hard to deal with. The paranoia is real and there seems to be little to be done, other than listen and distract. My mother used to get noticeably less anxious as the visit progressed and normal things were discussed. Good luck.
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roxynicole1 May 2021
Thank you. Hearing your story definitely helps. I'm sorry for all you and your mom went through. I suspect my mom may also have Lewy Body. She fits all of the symptoms to a tee.
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I have an elderly relative that also has hallucinations and delusions. Your situation sounds similar. She had just started on antipsychotic medications and we are also waiting for it to help. You say she is on Seroquel. That type of medication can take about 4 to 6 weeks to take effect. Have you talked to the doctor that prescribed it as far as what to expect and how long it will take to show improvement with her condition? I'm not sure what type of doctor that is treating her, but my relative sees a psychiatrist for her treatment. Have you checked into a nursing home for her to live? That has 24/7 staff that is awake to care for residents. It may be more structured for her care. I know how difficult caring for a relative with those needs are. I hope this helps.
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Your story is very familiar to me. My mom started suffering from delusions in late 2019, and it was nightmarish for her and our whole family. 

- She was allergic to the live Christmas tree we bought for my parents (this part is real). But it morphed into a world where pollen was everywhere, and it was going to kill her. She threw away masses of clothes and blankets that were “infested with pollen.” The pollen was in the hospital, even, when the anxiety turned into an ER visit. 

- The pollen aversion changed into a fear of…static electricity, I think? It was another invisible thing that terrified her. She wouldn’t touch water, she’d cover her entire body and head with a blanket to protect herself. 

- Then, worst of all: she started being terrified of my father, her husband of over 60 years. They live in assisted living, and she would call for help, and try to “escape” downstairs. She was very convincing, and the facility had to put my mom into protective custody until everyone figured out it was delusions. In the meantime, she hit my dad with a cane a few times, and would pull his hair “so he would know what it felt like.” Occasionally she was frightened of her ex-husband (who doesn’t exist). We had to have my dad stay with my brother, and hire a caregiver to stay with mom 24/7.

Seroquel and a bit of Sertraline helped to end this horrible cycle, thankfully, and I have my sweet, loving mom back (her memory is terrible still, but her warmth and twinkle in her eyes is just the same). It took at least 3 weeks to kick in, and we had to work with her doctor to find the right dosage. 

KNOW THIS, THOUGH: in the US, Seroquel has a black box warning (it can cause sudden death in elderly people, and increase fall risk). Because of this, the pharmacy would try to take her off of the medication every few months, and the whole horrible cycle would start again. Because the facility managed her medications, it took awhile for us to pinpoint that her medication had changed — and it takes 3 awful weeks for the medication to work again. My entire family agrees, after a few cycles of this, we’re all willing to accept the risk of this medication. She’s miserable, otherwise.

We have to remain vigilant, though, and have the facility notify us if anything changes in her medication, and then fight against it. This wasn’t easy during the coronavirus lockdown.

I hope you can find help in a similar solution. She was an entirely different person without the medication. My sweet mom was terrified, angry, suspicious and miserable, but the Seroquel changed everything for our family, and gave us our mom back.
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