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My mother who is 83, lives with us. She's on 50 mg serequel at night and neuropsycholigist added 12.5 twice a day during the day for hallucinations and agitation, which isn't working . When given 50 mg at 9pm , she's still in her room awake at 10pm. I don't think she goes to sleep till 10:30 and she refuses to take her pill sooner than 9pm right now. Neurophsychologist said to up her daytime dose to 25mg twice a day, which I'm starting today, but she hallucinates all day. Talks day and night till she sleeps, to someone who obviously isn't real. Doesn't drink enough fluids during the day, is in and out of the house all day, on the deck, in her room , and in and out of the bathroom, forgets where she puts things .I feel like I have to check on her all the time . She thinks someone got killed in our back yard ,went out one night at 7pm looking for the person to help. I literally can't handle it all . Last night I went in her room to check on her at 9:45 pm and she had her crochet stuff all over her bedroom floor, trash can knocked over , standing in front of the window practically naked ,just her underwear. I asked why everything is scattered on the floor, she said she got upset about "something" . I then told her she needs to go to bed, pick it all up in the morning , but she apparently picked it up when I left the room ,cause I checked 10 minutes later. We go to bed at 9pm and my husband and I are up at 3am cause he goes to work at 5am,so it's important we get sleep. I have crohns disease, heart failure, and now fibro muscular dysplasia . The stress of all this has taken a toll on me. I called the local hospital asked how I can get help here like a home health aid or something, but got nowhere with her. Guess I can't "force" her into a home, but she said I can call for an ambulance to come ,and tell them I can't handle her, and they will take her to the hospital for "evaluation " last time she was there I got tricked into taking her back to my house after a social worker told me she would set up a home health aid or something to come to my house to give me a break. Never happened!!! I guess the only way now to get her into a home is to call 911, have her taken to the hospital then tell social worker I "can't " take care of her, she's no longer safe in my home. Does that sound about right ??? I'm losing sleep, lost 6 lbs, I'm mentally and physically drained! 🤦🏼‍♀️

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Uplate!! Hospital social worker called me this morning and said they "talked" to my mother, she seems to be doing fine and doesn't appear to have psychosis or anything of that nature, however you and her can't live together so she will try staying with a "friend" until she can find assisted living home where she can live independently. I'm like wait, what???? She said she can live independently, and doesn't see or hear things and just like that you believe her?? Does anyone there know what lewy body dementia is and what it causes ? They don't seem to care what I say ,didn't contact her doctor or psychiatrist . How pathetic is that?? I called and talked to her psychiatrist and told her all this and she said what will happen is whatever friend she stays with temporarily will at some point will call 911 and have her evaluated again unfortunately ..I'm really disgusted with the health care system here!!!
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mstrbill Aug 1, 2023
What "friend" is she going to stay with? Who?
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Deb, I'm so glad that you got her to the hospital.

As you say, stand strong and don't let them send her back to your home.
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Debsworeout Aug 2, 2023
The social worker said they will only place her in assisted living , even though my mother feels she can live in a independant facility . Number 1. She can't afford independant living ,only gets social security, and they don't offer financial assistance ,like Medicaid. Social worker should just tell her the truth . I believe once she gets into a place ,even a memory care facility , she'll adjust eventually . What a mess!
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I called 911 yesterday to take her to the hospital for evaluation, then contacted her neuropsychiatrist, filled her in on her ongoing hallucinations , etc..she feels that it's probably time for her to go into a home, along with my being physically exhausted and unable to continue taking care of her. She said the hospital should send her to psychiatric facility to get proper medication for what she believes is lewy body dementia ,and psychosis .that will have to happen before she can be placed in a home , like memory care in a nursing home . My mom can still function like dressing herself, put her makeup on, clean herself up in the bathroom, but struggles with some other tasks . I told the social worker on the phone I can no longer care for her here, too much mentally and physically ,especially now since I've developed new health issues since she moved in with us 4 years ago. Going to the hospital today to see her, drop some clothing items off, along with charger for her hearing aids, but I'm not allowing them to try and bamboozle me into taking her back home!
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That's a pretty low dose of Seroquel she's on. Have you told the doctor it's not stopping the hallucinations?
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Debsworeout Jul 31, 2023
I told her neuropsychiatrist whom her Dr sent her to. Apparently he doesn't do anything for dementia or psychosis . She told me to up her daytime serequel from 12.5 to 25, within an hour she seemed dopey , then went right into hallucinations, heard her saying "Listen I have a job for you, I want you to take out someone in Brazil, which is my Aunt who died last year, and B.B. which is my father who died in 2015. She then said call me and let me know if you can do it. That's when I tried talking to her calmly suggesting we go to the hospital, get her checked out. She refused and said she's fine right where she is and I'm trying to get rid of her, and there's nothing wrong with her. I told her I was concerned that she might be dehydrated etc... then the hostile agitation began and she yelled at me and said she will deny anything I tell them, and say to them I'm making it all up ..I called 911 told them whats going on & that she's still hallucinating , wandering about at times, thinks people are physically hurting her , and then the one young police officer asked me what I think needs to be done. I told him, honestly I feel a home for someone with her dementia symptoms would be better for her, as she needs more care than I can physically give her. The paramedic said the hospital I suggested ,she can't go there because they don't do "placement" . So basically she's going to the hospital that lately sucks due to nurse shortages ,..used to be the "best" in the area. I hope someone there actually listens to me, as she knows how to hide things from people, to appear normal.
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Do NOT talk with your mother about this. Let staff at the hospital do any talking.

Call 911, have her transported and remember to stand your ground on not accepting her back home.

I'm so sorry you're going through this.
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Debsworeout Jul 31, 2023
Thank you for your advice ,greatly appreciated !!
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Yes, call 911 and tell them she's delusional/hallucinating, she might have a UTI or be dehydrated and refuses to go to Urgent Care (do not tell them you called because you're burned out from her dementia...)

Now that you know the hospital will tell you anything to take her home, tell them she's an unsafe discharge since you've found her wandering outside and your health issues prevent you from continuing to be her caregiver. Then start working with the social worker to get her a direct transfer into a facility or into their psych ward. Don't take her back no matter what, and make sure no other family member or friend goes to get her, either (my step-FIL called a neighbor to come get him on one of his ER stints and the hospital released him to this person). I wish you success in this difficult process but there's light at the end of the tunnel!
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Debsworeout Jul 31, 2023
Thank you so much ! I tried talking to my mother yesterday about a home. Naturally she didn't want to, and at first said " you can't legally force me to go" which I think someone at church told her that,not sure. See, she tries to be clever and puts on an act in front of those at church ,but as soon as she gets back here, she starts doing the talking into her hands ,and saying things out her bedroom window like " my husband wants my lights out" and I knocked on her door at one point cause it was closed , and she didn't respond or hear it,so I opened it,and she put her finger up and said " excuse me, one moment I'll be back " so she definitely has hallucinations all day. I'm telling her today when she gets up after eating breakfast, that she needs to take her serequel at 8pm not 9, because she's up way too late otherwise . I already know she's going to snap and refuse , and when that happens if she doesn't go along with it, that'll probably be the time, or tonight at 8pm when I try to get her to take it, that I'll call 911 and tell them she needs a social assist to the hospital, and that she's aggressive. Paramedics have been here twice in the past, so they know she has dementia ,but I will remind them and tell them of her hallucinations. I will definitely make it known at the hospital that she can't be released into my care because I am physically and mentally no longer able to take care of her. Took my blood pressure earlier, it was 165/102. That's way higher than its even been andmy cardiologist doesn't want it over 130
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