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I know it’s normal for people with dementia to have sundowning each night where they get confused maybe even agitated. My grandmother gets completely escalated nearly every night. I’d say at least 5/7 nights a week. And the 6th and 7th nights she’s still agitated or crying or something but it only last about an hour and eventually I’ll say something that seems to comfort her enough to agree to stay with me. Full on meltdown nights start at average 3pm and go well into the night until she wears herself out. And sometimes then she will go to sleep for a couple hours and wake up again still in the same agitated state and ready to get the hell out of this house at like 3am. Doctors just keep dismissing us, I’ve asked for psychiatrist referrals for months but I’ve resorted to seeking out my own and hopefully getting an appointment this month. The medications the doctors give us are not really effective in calming her down unless you can magically predict exactly an hour before she might have a meltdown (which I can do sometimes). But is this really normal? Is this really what people commonly experience and I just need to accept it? She’s slowly killing me and my mom with this. I try every too and trick I’ve ever read and most of it rarely works. And really it’s hard to tell when he’s actually confused or she’s actually just mad because she never wanted to live with us. Some nights it’s very clearly that she’s mad we won’t take her to visit her mother but other night she says she knows she sleeps here every night but that doesn’t change that she wants to be at her house and usually she knows which house she’s talking about and even though there is no one can stay with her to cook for her and make sure she changes and bathes and doesn’t fall, she says she doesn’t care and to let her be and live how she wants to live or she says/expects that other family (who can’t possibly make time for her) will just come and stay with her if she’s in her house. She has meltdowns any day a caregiver has to come here (or previously when she still was at her house). She is best behaved with me, but I cannot be her sole caregiver. Just, is all of this normal? Are we doing something drastically wrong here that I can’t see??

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I'm afraid that sundowning is really normal for many people with dementia. This really is what people commonly experience and you just need to accept it, to a certain extent. Don't give up trying to at least minimize it, though!

A psychiatrist is a smart move. If at all possible, try to locate a geriatric psychiatrist. Many psychiatric medications work differently in older brains, and that is the specialty that is apt to know most about this.

What kind of doctor is now managing your GM's dementia?

There is some sense in what she says: "she doesn’t care and to let her be and live how she wants to live." From her perspective, it seems like she is being punished, and what did she do to deserve this? Well, what she did, through no fault of her own, is get dementia. Poor dear. If it weren't for that, I'd encourage you to enable her to stay in her home as long as possible. Order meals on wheels. Disconnect the stove. Have a bath aide come in once a week. Have a housekeeper to do laundry and clean once a week. We did things like this to extend how long our mother could stay in her apartment. But with dementia there simply comes a point where that is not possible. Has your mother's doctor said she can't live alone?

The book "Being Mortal" by Atul Gawande addresses the importance of quality of life and well as safety and simply keeping alive, for elders. He doesn't address directly how to apply his ideas to persons with dementia, but I think you would find reading it will help your understanding of Grandma's "stubborness."

I don't think you are doing something drastically wrong. I hope you can improve your situation, but it definitely is not your fault.
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Look into some sort of nursing home care. You're grandmother has dementia with sundowning and she's not going to be happy wherever she is. You and your mom need to take care of yourselves. As long as your grandmother lives with you, you'll all three be miserable. Don't guilt yourself into thinking you're not doing right by her if you move her into a facility. She needs to be somewhere that specializes in dementia related, late in life issues. She's going to be miserable wherever she is. No need for all of you to be miserable with her all of the time.
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Not normal. Tape a couple of her meltdowns on your phone.

When you see the psychiatrist, have a list of the meds they've tried and the dosages.

What med are they giving her now and what dosage? Have you asked, even over the phone if you can safely double the dosage?
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Another thought. Grandmother doesn't like living in your house. She might not like a nursing home, either. But if she has to live somewhere she doesn't want to, a care center might suit her better and would certainly preserve your sanity.
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My mother was showing the same behaviors, starting between 2:00-3:00 and sometimes even lasting all night. And to top it off, she refused any dementia-related medication! Ultimately, we had to take get her into a geriatric psych facility (which was horrible, but made a huge difference in getting her behaviors under control). If they are successful in adjusting her meds appropriately, that might be enough, as my mom is a different person now at night and much more manageable. Unfortunately, we knew that my mom would not continue taking the meds once home with my dad, so we had to make the difficult decision to place her in a memory-care facility. We’re all sad about it, but it clearly has been the best of all the not-ideal options. 

Just a note though. Our healthcare navigator stressed the importance of the geriatric psych facility BEFORE placement in long-term care, as those types of behaviors are not considered manageable even in a facility and could get her kicked out with a black mark on her record. With a history like that, it could make it hard to get her into many other nursing homes or assisted living situations.

And I agree with the above poster that says that this IS normal for dementia patients. My best friend is a neurologist and she told me behavior-issues like we’ve experienced (not the memory loss) are the most common reason that loved ones are placed in long-term care facilities. That being said, just because it’s normal doesn’t mean there aren’t more options to improve the situation. And you may also want to get her checked for a UTI, as that can exacerbate dementia issues and often doesn’t show the other typical symptoms in senior citizens. Best of luck! This is horrible situation for all involved. I saw a meme that I try to remember to give me perspective. “Remember, when someone with dementia is giving you a hard time, it is because they are having a hard time.”
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I'm in a similar with my Mom...she doesn't like change...wants to go home...thank God for ice cream and Atevan!!
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I just read your original thread. So, you and your mom seem to have brought grandma from VA to CA and are trying to care for her at home.

Sigh.....

You said in one hospital they knocked her out with Seroquel. Did anyone explain that the dosage may need to be adjusted, and that seroquel may be the best choice for this level of agitation and delusions?

Have you looked into a geriatric psych facility? Or just an inpatient psychiatric evaluation?
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Ok so try to be very open minded when reading this. As people age, their intestinal tracts start to deteriorate. The microbial communities decline and this starts the process of declining health. Some people start to become sensitive to the natural preservative in most foods. The naturally occurring preservatives are called “ salacylates”. People can have reactions to these foods in the form of crying and angry outbursts that can last for hours. Please look up high salacylates content of foods. Maybe she is eating something in the early afternoons that is triggering her behavior. Consulting an integrative nutrition specialist can help figure out if she is sensitive to these things. The episode can start anywhere from immeadiatly to 2 hours after consuming something high in salacylates. Fruits are the worst offenders.
So I know if you never heard about this it sounds strange, but psychiatrist know all about this problem. Good luck my friend.😇
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Doctor now. Check for UTI. Then, Ativan or something strong for agitation. Sundowning is VERY normal for elderly with dementia. My aunt was in a MC facility and EVERY single one of the 50 residents had meltdowns starting around 3:00-ish. They would start wandering the halls and moaning and mumbling. No lie, it was like watching an episode of The Walking Dead. Most would wander and babble. Others would get extremely agitated. Nights were horrible.
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Hi Ema

I don’t agree with people that say this is not normal. Honestly all dementia patients are different.

In your case we have something in common. My mom does the exact same things. She is in assisted living memory care and not with me because we couldn’t do it.

Almost everyday she has a melt down and wants to leave and things she’s been abandoned. From the advice I have gotten here I have limited my calls and visits so she can adjust to her new environment.

My suggestion is to find a memory care facility that you think is good and move her there. A geriatric assessment would also be a good thing to have done. Then take a break, even if it’s a couple days and regroup.

There are a ton of people on this forum with great advice and knowledge. Come here and vent as needed!! It’s super rough and not something anyone expected to deal with. What’s worse is there is potential that we can get dementia as well as it looks like the numbers are increasing.

Good luck and prayers are going your way.
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