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I just moved my mom out of her AL to a group home with six residents. The move was made because my mom was falling frequently and the AL was not staffed to keep an eye on her at all times. The new group home is 3 minutes from our house, spotlessly clean every time I've been there, and all of the residents appear clean, content and well cared for. The owner and her staff are kind and compassionate and seem to be truly invested in the residents and their well-being. An added benefit is that her cherished little dog can once again live with her. The home was recommended to us by our nextdoor neighbors who had their mother there for several years.
The first couple of days seemed to go well, but the last week and 1/2 has been hellish. My mom started insisting that the staff was abusive, dragging residents around by the hair, fighting with each other and showing her containers of cocaine. She became hyper-vigilant with her tiny lapdog who never leaves her side. She insisted it need to have a leash on literally all the time and acted as if someone was going to steal or hurt the dog. When her sisters were here to visit this weekend she refused to go home, became belligerent and was calling anyone and everyone horrible names etc. Ultimately we had to call EMS and she was removed from our house in restraints. She told the EMS crew that we had her living in a crackhouse. It was unbelievably awful. Thankfully the EMS guys were fantastic. Compassionate, gentle and patient. The hospital did a full medical work-up and pysch eval and determined that it was dementia related and nothing else. They did prescribe seroquel, but so far she has only had one dose and is refusing to take any more. Tonight she escaped the house when the overnight caretaker thought she was asleep in bed. This is the first time she has done something like this ever, and the operator of the home indicated they will have eyes on her all the time now.
This is a long story to get to my question. My mom has never been happy anywhere she has lived, including in her own home. She simply doesn't want to be old, and is in denial about her dementia diagnosis, but these wild and detailed stories are a new development. I really feel like they are delusions or hallucinations, but can something like that carry on for days and weeks at a time and take on a life of its own? She has created a whole story line around the abuses at this group home, but I can find no evidence that they are true. The staff would need to be doing a phenomenal acting job if it's really as Jekyll and Hyde as my mom portrays. However, it's hard to not worry that there is some truth to any of it. Anyone with similar experiences out there who can provide some advice?

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I have been thrown into a family members delusional world view for almost a month now. My family member is in his 30's.

This is part of what I have learnt. Long term psychosis causes permanent brain damage, the long the psychotic state the greater the damage. My son has been hospitalized for 2 full weeks and is no closer to reality than when he got there, even under the care of a psychiatrist and on medication.

I know this is not what you want to hear. But coupled with the damage that leads to dementia, until your Mum is on the right medication, she may remain in psychosis.

You say she is generally not a happy person, but perhaps it is also time for her to stay in her new home and not be brought out for visits, or she may have to move into a secure unit where unfortunately she will not be allowed her dog.

We are dealing with a dog too.

It is heart breaking, it is exhausting, it is scary. My heart goes out to you. Make sure you take care of yourself. I had to have a tooth pulled yesterday, I had been clenching my jaw and grinding my teeth so much at night that I cracked it right down the middle.
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SnoopyLove May 19, 2021
So sorry to hear this, Tothill
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With dementia, any traumatic situation can cause a change from which they may recover, but in my mom's case, she never does.

When my dad -- her rock -- was diagnosed with inoperable cancer, she started talking about her first high school boyfriend, a guy she'd never mentioned before. I had to move her to a nursing home a few days after my dad's funeral, and suddenly the old boyfriend was "visiting." Four months after my dad's death he was completely forgotten, and Mom and the boyfriend were "married." This has been going on for 2 1/2 years now, and she carries on both sides of conversations with Dan the Invisible Man. (In reality, the last time she saw this guy was in 1944, and he's been dead since 2009.)

Fortunately, my mom isn't hysterical or psychotic as it sounds like you're dealing with, but her fears and disorientation at moving seem to have morphed into living at a crack house. I'm so sorry.

I would suggest not bringing her home for visits and having her stay at the home so she can become more acclimated to her new surroundings. Visit her there, and if she wants to go home, tell her repeatedly that she is home.
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It sounds as though your Mom is deteriorating and her condition worsening. You have already had the workup I would recommend, and it may take a bit of time to tell if her new medication will work or if she requires something "other" of something "more". Drug cocktails can work but they are difficult. There's a difference between delusions (wrong beliefs) and hallucinations (actually experiencing a screnario that isn't happening). The former can be permanent tendency and the latter more a visitation of something that can pass. But the docs will work on the medications. Sadly the Mom may not get better. Sometimes meds that help with mentation tend to make seniors less steady on already compromised mobility, and falls increase. Sometimes the only answer is increased care such as memory care, but that of course means sometimes a doubling in cost, and certainly less good living circumstances. I am so sorry you are going through this. Each situation, each sufferer is as unique as his or her own thumbprint. There really is no one answer and even doctors struggle to know what is going on.
I am assuming a UTI is ruled out as urinary tract infections can have profound affects on mentation, esp something to consider if this is a sudden change.
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Their brains are broken. They have thoughts that connect in bizarre ways. My mother-in-law has end stage parkinsons and is on hospice. She will tell you that she walks about the facility and the trips she takes with famous friends. Check into confabulation. It is real to them. Also have her checked for urinary tract infection, those can cause delusions or delirium
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In my experience, the delusions may never go away. My Mom went into Memory Care last December when she had delusions and was diagnosed with Alzheimer's. The delusions have continued and deepened in their detail, very similar to what your Mom is saying. I think it is my Mom's confused way of making sense of where she is and how she misses her old life.
The staff at her home is very responsive to her needs and concerns and to me, and we keep reassuring her and redirecting her to more positive thoughts. I do explain that her condition is affecting her health and outlook, and sometimes that helps.
My Mom isn't happy, even though her Memory Care unit is lovely and the best in the area. But she's always been critical of everyone and everything, even when she was well.
I've been told that "safe trumps happy," here at Agingcare.com and it is sad but so true. I wish everyone who faces this with their loved ones the best. It takes a long time to accept what's happening and to make the best of the situation.
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roxynicole1 May 22, 2021
Thank you. Safe trumps happy may need to become my new mantra.
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I’m slower than everyone else here, my instinct was get her out! Lol I’m learning.
We have spent the last year trying to chase every lead, find answers to all the things going on with my mom. She’s fallen again and now I understand simply she can not be in AL, though she insists. I’m still getting her permission like a dope for every decision.. Then in a care meeting for new place they mention she’s bipolar and her mental illness? Meds not being taken for it, been diagnosed several years? What? Later I found medication in a zip lock she wasn’t taking but “saving for when she needed it”!

I do not envy anyone on this site except the ones past this nightmare. Truly you start to doubt your own sanity.
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Aunt Angie May 22, 2021
Hello,
I wanted to bring it to your attention I posted a response to your concerns.
it is listed as Aunt Angie. Hope it helps
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Thank you. She has been checked for UTI, medication interactions and had an MRI. I'm thinking the big change of the move caused something to snap, but who knows for certain? This is a wild ride for sure.
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My mom, in MC, has been saying for 6 months that she does not get called to, taken to, or provided with meals.

This is simply not true. I have come in when she is at meal time. I have been sent other pictures of her eating at meal times.

She is in a beautiful setting, with caring people. I trust them.

Sigh. It's all so hard.
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CathyS May 21, 2021
Yes, it is.
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Yes, delusions can go on seemingly forever. Some of my mom's dementia related beliefs are now permenant to her. It will not get better. Just know that. I wade through all of that and just work at having whatever positive relationship I can with her. It changes constantly. I remind myself often that she doesn't know reality much anymore and that helps me deal with it. And I only have a Financial POA to help her pay bills, etc. So I have little say so with medical decisions. If you can still get a POA and want to be that involved, I would advise doing it as soon as possible. I can't do that for medical now because of my mom's diagnosis. And no one will tell me what that is because I don't have POA rights for it. I know her medicine changes because I pay the pharmacy bill. She was recently put on Haldol for hallucinations and delusions. This tells me that I am right about her level of dementia. Just know that you are not alone in this. We are all experiencing what it is like aging in our society.
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roxynicole1 May 21, 2021
Thank you! It is so helpful to know the length and power these delusions can potentially take on. I do have guardianship and conservatorship, so I am the decision maker on all counts. Knowing what I am dealing with will help me feel more secure in my choices.
I am sorry for the situation with your mom. It must be so hard to have to piece everything together from the outside looking in.
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I do feel your anxiety and distress. As others have pointed out, there may be an underlying medical condition that may take time to sort out. In my mother's case it was too much insulin and not properly taken. Her prescription had not changed as her failing knees gradually forced her into a life of much less physical activity. She went from a water aerobics class 3 X per week and daily walks to sitting in a chair in front of a tv all day because her knees could no longer support her and other conditions made her a poor risk for surgery.

She slipped into a coma several times from taking her insulin when she got up but did not eat breakfast. During that time she kept having the same delusion/hallucination that there were people living upstairs (she lives in a 1 story mobile home). These people would demand that she fix them meals, but then would leave without eating them. This lasted for most of a summer.

Finally we managed to get a doctor to listen to us. We ended up with Mom taking no insulin at all, but with a much more carefully monitored and restricted diet. Or at least as much as we can manage without being there. We finally got a new doctor who reviewed all her medications and reduced some of them and removed others. Her original doctor had insisted that all the medications had proven good when originally prescribed and would not consider that Mom's changing lifestyle required changes. It took several months to get her used to her altered meds and schedules, but she has not had the delusions/hallucinations since her medications were reduced. That was in 2018 and she has done much better since then. That summer, though, was really horrible. I would not want to do that again, nor would I wish it on anyone else. I hope you can manage to get some medical guidance to ease your mother's distress.

In Mom's case the delusions were obviously delusions. Perhaps you could get a granny cam to put in your mom's room that would be pointed at the door and the area near her bed and chair? You could be assured that you could monitor activity concerning her but still leave her some privacy. This may help with your mental health while you get more information on your mother's health and mental issues.
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