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My mom is in an ALF. They complained that she needed meds to calm her down, she has wanted to leave there, really hates it. I took her to her primary care doctor who breezily prescribed Seroquel. It’s been about 8 weeks now, and her behavior has only gotten worse. More than that, she has deteriorated rapidly and noticeably - she is extremely confused, frequently incontinent, doing crazy things, talking gibberish. BUT — she knows exactly who I am. I have started listening TO MY MOM, she has long moments of complete lucidity when she tells me she doesn’t want to live there anymore; she is not asking to come home with me, she CLEARLY asks me to move her to a better place. I have been visiting more often and observed for myself that the facility just isn’t equipped to handle her particular dementia symptoms; I now realize they want her drugged so they can handle her rather than admit that she needs more specialized care. I am preparing to move her to a better facility, and I want to stop the Seroquel. But I want her to be stabilized NOW, I am really afraid for her health. She is very weak and tired, all of these negatives amplified ONLY since the Seroquel started. I know this drug is dangerous and tricky and that a doctor needs to supervise taking her off of it. The doctor who prescribed it is off the case, she was unresponsive once the bad reaction started, and I frankly feel she is out of her depth having prescribed it in the first place so easily. So my question is: can I, as her legal representative, take her to a psychiatrist and ask that they ONLY do what is necessary to get her safely off of the Seroquel and not START her on any other long term or dangerous psych med? Just to get her back to “square one” as soon as possible, so that I can move her to the new facility with a clean slate?

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I suffer from insomnia and my Doctor after having exhausted a list of sleep aids that did not help me prescribed Seroquel saying that it's sometimes used off label for insomnia. I had tried it a few times and was not impressed but one night I had been up for three days straight with no sleep so out of desperation took a Seroquel. To make a long story short I had one of the worst nights of my life. My Mom had died about six mths. previous to this and I spent the night having really realistic flashbacks and even felt suicidal. I ended up walking around my neighborhood at 4am. trying to shake it off.

So, count me as one who would definitely not recommend this particular drug.
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Just a perspective of what is "a lot" of Seroquel, I have a friend who was taking 800 mg a day. He has bipolar disorder, and the dose for that is always higher than is typically prescribed for dementia. I can't remember what my husband was started on, but 100 mg was sufficient and he took that for nearly 9 years.

EACH CASE IS DIFFERENT. Adjustments are often necessary. And sometimes the drug does not work at all for the patient.
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FLP, my mom started on 12.5 mg of Seroquel. Over the course of three years she was up to 75 mg. It does sound like a lot, but everyone is different. A Geriatric psych assessment sounds like an excellent option.
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I would assume that most hospitals would have a geriatric psych ward. I live in one of the poorest states in the country and there are three of these wards in hospitals within 30 miles of me. You would have to either take her or have her transported to the ER and they would transfer her to the psych ward. I have gone through this with my mother (Bi-polar) dozens of times throughout my life, so I know the drill. It may take a week or more to get her stabilized, and she will be under the care of a psychiatrist experienced in dealing with the mental health of the aged. Please let us know how she and you are doing.
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To She1934 — the PC started my mom at 50mg Seroquel, and upped to 100mg after two weeks. I know it’s all different for everyone, but if your husband is at 25mg, that makes me really nervous. Sure seems Mom would’ve benefited from a slower ramp up. But thank you for your response, and best of luck.
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Thanks everyone, I really appreciate your help. This is my first mother with dementia ;)
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This is a very hard and personal issue for me. After a few violent incidents, and several falls, an incident occurred after 30 hours withou sleep, I called 911 my husband was taken to the ER where he was tested in about every way - 2 cat scans, blood, urine, ekg, electrolytes- all "normal", I requested a psyche eval and was referred back to his PC. I was given the name of a Psychiatrist, very highly recommended as one who specializes in geriatric cases by the PA and called to make an appointment, but was told that he does not take Medicare patients!!!??? Really? ( He was diagnosed a year ago with "an Alz-like dementia"). I was then referred to another group of docs who were very helpful, made an appt., had to return to PC who then asked why, telling me that a psyche eval would not help my husband, saying that any "treatment" would not be retained mentally, and that he could prescribe a drug to help mellow out the violent behaviors. Though I do not care for this Dr. Personally, I have found his two PA's to be very helpful, and I have to tell you that at this point I would rather have my husband be a bit foggy than deal with the violent outbursts. I was severely abused as a child and when this happens I panic and all I see is the horrible man who hurt me as a child. I now have POA. He is not aware. Yes he does have lucid moments throughout many days, yet he reverts back into many many obsessive and delusional, and violent behaviors. Then a two weeks ago another violent episode when I called the police after he hit me again. They were respectful, kind and we had my son drive him to the hospital - more tests, finally a social worker who was encouraging regarding application for Medi-Cal. All of this has resulted in a dire financial situation just trying to keep up with the co-pays. There is no way I can afford to place him in any type of facility though I am beginning the Medi-Cal application and VA Aid and Attendance process. I get some respite help grant money but that runs out next month. But my real point here is that his PC doc is very conservative regarding meds. He has discontinued his statin and two other drugs when starting 25mg seroquel 1x a day, but after his second violent episode he now takes 25mg 2x daily. He sleeps much better, and though he still has many obsessive behaviors, they are holdovers from before seroquel. Every person's situation is different and I truly understand your concerns but I feel that to make a blanket condemnation of a drug that can help with the "management" of a patient is short-sighted. Look at all meds and their interactions and contraindications. Overmedicating is so easy to do and it is so important to get the right combination. And, of course, UTI's are always something to consider. Most of us are doing the best we can, trying to keep our heads above water and deal.
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I believe an inpatient geri Psych evaluation is the way to go here. Google "senior behavioral clinics" and the name of your state. Call the biggest University-affiliated hospital closest to you and ask to speak to someone in that department. Call her insurance company and talk to the "nurse line" about how to get her into an inpatient unit for an adjustment of psychiatric meds.

I understand that your mom wants to home with you. Don't do that. Caring for a dementia patient who becomes agitated frequently is not a job for amateurs.
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You not only can but should seek a second opinion from a better-qualified practitioner. I'm not sure how you go about it - others will be along very soon who can tell you - but my suggestion would be to request an inpatient evaluation and reassessment of your mother's care plan. While that's going on, you can hunt out a facility where she can make a fresh start.

Have no fear. YOU are the person your mother appointed to be her advocate. Go right ahead!
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Don't stop the Seroquel. You need physician order on how to taper her off. Sounds like my mom l, she was hospitalized for a geriatric psych assessment to try to find the med combo that would work for her. It was a constant adjusting of her meds. She was kicked out of the original memory care facility and transferred to a smaller care home, homier atmosphere she was referred there by hospice. Worked much better toward the end. Everyone in that smaller place had been kicked out of their previous facilities.
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