Seroquel

DW takes seroquel for agitation, went through regular increases 12.5 / 25 / 50 / 100 in evening then +25 morning then +25 noon. Initially got worse before it got better a few days after each increase but less effective after 6-8 weeks triggering another adjustment. I was told 300 would be limit for her (age 59), most likely going to different medication before we get there. Somewhere in the middle about 2 months ago we also tried adding MMJ low dose (1mg) THC higher dose (20mg) CBD as we are in a state that makes it an option. It also helped a little but I think the seroquel has been the major contributor to less agitation, while it lasts. Everyone is different, there can be a lot of trial and error to find the right medication. Keep updating your prescriber often so they know what is working or not.

My DW started at 25 mg per day (12.5 morning & 12.5 evening) over time (about 2 years) the dosage was gradually increased to 100 mg per day (25 mg at 7AM, 11AM, 3PM & 7PM) which kept her delusions in check. When I placed her in Memory Care the neurologist suggested to try backing off the dosage once she became acclimated to her new environment. She is now taking 50 mg morning and evening and she is doing fine.

The surquill and haldon has been our best mixture for delirium, hallucinateion anxiety

Avie, beware starting too many things simultaneously, if he has an adverse reaction you may not be able to tell what is responsible. Give the Seroquel time to work. "Natural" is not equivalent to safe.

My DW started with auditory hallucination first. Nothing violence or scary and just seems like she is talking to someone else. We started with 25mg Seroquel and it makes her sleep most of the time. So I stopped to not give it to her everyday as our doctor suggested. Unfortunately in two to three weeks, the hallucination got worse and it has became violent or scary for her 90% of her time. It makes her more combative. We increased the dosage to 50mg now everyday but she is fighting to take this medication now. It is so hard to see her being so angry or scared. I am not sure if this med or increase dosage will help.

What M1 just said. Yes it is worth trying and I think you may be mixing up two different kinds of meds here. Many people say they are not sure the "dementia" meds work, that is Memantine (I think?), and Donepezil which may or may not help delay or mask progression symptoms. We could not take these due to severe and immediate weight loss as they caused DH to lose his appetite completely.

But, their broken and dying brains can cause hallucinations (seeing, hearing, smelling, feeling things that are not really there) and/or delusions (false beliefs or "memories"). And that can trigger extreme fear, confusion, distress, anxiety, anger, and dangerous ideation that can lead to their escaping/wandering/elopement, weaponing up to fight back, harming someone they don't recognize, etc. etc. (Ask me how I know this😥) .

Quetiapine (Seroquel) was our magic pill and ABSOLUTELY worth it. Definitely helped. In fact it was key to keeping him safe especially when in those "middle stages and getting worse", as you describe your LO. Please see the excellent feedback on this thread about how you have to finesse it with Dr's guidance to get the right dosage which changes over time. We have found the sweet spot dosing 3x per day, and it has made it possible for him to be calm, alert, and at home into late stages after a h3ll-on-wheels mid-stages that I would not wish on anyone. Morning, pre-sundowning, and bedtime are our dosage times. Total is now 300 mg daily for years.

His Dr. explained the potential risks (pharma warnings of what "might" happen in a few cases) in comparison to what actually WAS happening at home. Our dementia reality was super scary and not sustainable. As hard as it was on me, it clearly was as hard, or harder on him - and I had the advantage of understanding why he was struggling whereas he could not comprehend it (anosognosia) nor fix anything by himself.

You are in charge now (as DH's neuro told me on diagnosis). We had nothing to lose and for the last few years, we both feel much, MUCH better with this med on board. FWIW, DH is still physically well with no heart problems or anything that he didn't have before taking this antipsychotic long term, at fairly high levels.

I'm still so new to this journey with my DH and truthfully I'm not very good at it. My husband has had what I know now is hallucinations for years now, before he was diagnosed a couple of years ago. I really didn't think much about it then. The people and animals he saw were friendly but now he threatens them, tells them to get out. He even got up one night, grabbed a flashlight and his knife and went to every room and looked under the bed for the man in our house. He was prescribed seroquel but I haven't started him on it, yet. Sorry, this is so long but my friends either don't believe me or don't want to hear it. It's a lonely and sad time for both of us. He gets SO obsessed with things, can't find words to explain what he's trying to say and then gets frustrated. Actually, he's healthy other than having AFib. I don't know what stage he's in or what to expect. I just know I'm tired but I also know it's not about me. I'm afraid of his driving which he doesn't do much anymore. I'm afraid when he drives our pontoon boat and other people are, too. All the responsibilities are overwhelming. He's 75 and I'm 66 and retired 3 years ago. Sometimes, I wish he was never told he has dementia because in some ways it made it worse knowing, if that makes sense. Thanks for listening and good luck to all of you caring for or living with this horrible disease.

M1 beat me to it. Driving and boating don't mix with dementia - especially at the stage your DH clearly is. Just disappear the keys and pretend you have no idea what happened. Rinse and repeat. That's what I did. (Short version to a long fiasco, but that's the bottom line). Trying to gain agreement from your LO, is not going to happen. Or if he does agree, he will not be able to keep that promise.

Also, knives and hallucinating PWDs do not mix. Please start the Seroquel (and disappear any knives, guns, big tools, scissors or anything else that could be weaponized). This is one thing I know from experience. If you do not take charge (even without announcing it) dementia will, and you will not like where it leads you both.

Welcome, buckle up, and don't wait a moment longer please. This disease is a monster and your LO can't be in charge any more.