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I am a caregiver to an 83 year old lady, I have been staying with her in her home for 2 years, I am there 4 days a week 24 hours a day. We get out everyday to run errands, go to church, and to listen to music and sometimes just to get out...
For the past couple of months sundowners has set in and seems to be getting worse. She is great in the morning and early afternoon, but around 3pm or 4pm she literally gets absolutely belligerent about going home, asking where her mom is, trying to get out the front door to go home. She doesn’t believe anything I say as if I am her enemy and she thinks I am going to harm her. I try to stay calm telling her things like, your mom is at work and she will be back later, I also try to redirect her to other things. Sometimes those things work and other times they do not, she is very smart and still has the ability to say you are trying to manipulate me. Her daughter had to have special locks put on the doors so she doesn’t get out and go walking up the road, when she gets in her rage she is very mean she starts banging on the doors yelling let me out of here. It’s VERY stressful!! We have to give her a Klonopin around 4pm everyday and that use to help but it doesn’t seem to help much anymore. We literally are at our wits end...maybe there is a medication out there that can help with obsessive thoughts? Something to calm her and help her not think so much. She is a wonderful person, loves people, when we are in public she always seeks out people or children that need a hug or a compliment. She definitely helps to slow down live in the moment, but these insane belligerent spells are almost unbearable to witness and I am a very mentally strong person. Can someone help or have a solution, please?

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Taylor75- Please forgive my poor choice of the word “judge”. I should instead have said “assess” or “evaluate” or “compare”. I did not mean to imply that you were being judgmental towards someone for whom you obviously care deeply.

Instead, I meant that sometimes we (meaning others who care for our dearly loved relatives and friends) can momentarily lose sight of the fact that behaviors often result from the illness and not from any conscious action from the sufferer.

My LO is currently swinging abruptly among exactly similar behaviors as yours is. Sometimes, and getting more frequently, it actually helps me to stay balanced by reminding myself that there is NO WAY to help, no matter how painful it is to be part of or how much I want to, and that both my suffering LO and I have to ride over the squall, moving from minute to minute.

That’s the survival I’m in right now too. Best thoughts and hopes. We’re all doing the best we can.
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Taylor.....was Penny's urine actually cultured to see what strain of bacteria the UTI was? That's important.....because she may need another antibiotic or a DIFFERENT one.......like Isthisrealyreal said. Call the doc and let him know about the erratic behavior being new and not improving since the UTI. If that's not at the root of her episodes, maybe he can prescribe heavier meds to calm her down.
This whole dementia dilemma we're all facing lately is just awful. My mother is in memory care and I feel your pain for what you're going thru. Mother gets SO agitated over the least little thing, and there is no reasoning or using logic with her (or anyone with dementia) because it's a waste of time. And dementia is CONSTANTLY changing face, too, just to throw us and KEEP us off guard. That's one of the worst aspects of the disease, in my opinion. How do you prepare for something you can't predict? Sigh. Tough stuff, for them and for their caregivers.

Best of luck ....I hope the doctor can help
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Taylor75 Aug 8, 2019
Thank you so much for advice.
Yes, they took a urine sample at the time
and had to send it off to get culture to determine that she had a UTI. It is definitely possible that she still has one, I will call her doctor tomorrow...first thing.
Poor thing tonight she was hallucinating thinking a man was in the house that was going to hurt her... it definitely doesn’t help the situation that she was sexually abused as a child and treated terribly by her siblings and father. Of course she relives that and at this point it seems difficult for her to trust me or the other caregiver...she thinks we will harm her, when she is has sundowners. She told me tonight she needed a gun to protect herself...😓
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Her UTI may not be completely gone. There is strains going on that require some different antibiotics. I would contact the doctor and tell them that she hasn't improved with the course of treatment and what next.
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Reply to Isthisrealyreal
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Her brain is BROKEN.

She WAS a wonderful, loving, cheerful family member, community participant, friend an ally, BUT THAT ISN’T WHO SHE IS NOW.

She is NOT “INSANE”. She is living with a brain that is becoming more and more unable to interpret what her senses can bring into it. She cannot be “talked out of it” nor can she “live in the moment” because her mind no longer has the capacity to measure or comprehend “moments”. There are times when she IS in her past, and times when she is nowhere that you or she can identify.

There is NO “solution”. There are distractions, different medications or combinations of medications, different kinds of activities. All of us would love to find “solutions” for our loved ones. There are none.

For yourself? Make your best attempt to observe HER behavior in the moment and do your best not to judge her behavior by comparing it to what “normal” people do. Having dementia is not normal.
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Taylor75 Aug 8, 2019
I am definitely not judging her just trying to survive... I know this is not her. I just need help from other people who have experienced this and things that worked for them.
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This link is to a very good article, but the bad news is I think you're already doing most of it... :(

https://www.brightfocus.org/alzheimers/article/tips-managing-sundowning

Possibly the environmental factors might be worth reviewing? I am shamelessly cutting and pasting that section, anyway, with credit to the author, Kathleen Allen, LCSW, C-ASWCM:

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Environmental Approaches
Environmental cues can impact a person’s sundowning, adding to their agitation, confusion or aggressiveness. To set up the immediate environment to lessen the symptoms of sundowning, try the following:
During the daytime, keep window coverings open for maximum exposure to bright light.
At dusk, close the window coverings and turn lights on to eliminate any shadows caused by the late day light. Shadows can cause confusion for one with dementia.
Create a quiet routine for the early evening. This might include an early evening walk, or calming background music.
Minimize loud background noises such as banging pots, or sudden loud noises.
If needed, create some white noise, the type of noise that is low and in the background. It can help to lessen the impact of sudden noises.
Minimize clutter in rooms.
Minimize the number of people in the room;
Monitor TV watching and the images on the screen. Many TV scenes can be upsetting, especially to one with dementia.

*******************

The only other thing I can pass on is that best practice recommends accompanying a person who wants to go out, rather than confining her. Of course I don't know anything about the area you live in, but would it be possible and perhaps beneficial (simply because of the physical activity) to go for a walk, and during that walk redirect her home on the basis that the journey isn't possible "today"? You could cite roadworks, traffic disruption, weather, whatever comes to mind.
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How long does it last – how many hours? Could you think of something she would like that would take up some of that time – perhaps repeats of a favourite TV show? Or something that would take up your time and she can’t interrupt, so that you are not being forced to be right on the spot with her? Can you use ear plugs – even softening the volume might help a bit. And find out about the medications as well. It’s a good job that she is ‘nice’ a lot of the time, as otherwise I don’t see how you could cope at all. Best wishes!
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Hugs! Hopefully she can see her doctor soon and they can help.
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Reply to Isthisrealyreal
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This situation sounds very difficult. I feel so bad for you, trying to talk her down and I just don't think you can.

Has someone talked to her doctor about these huge changes? Maybe earlier klonopin or a higher dose, etc.? And/or something else needs to be added to her pills, preferable given BEFORE the sundowners starts to kick in.

She needs to be re-evaluated ASAP.
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Taylor75 Aug 7, 2019
Thank you so much for your advice...
The crazy part about all of this is, Penny had an appt. with her FNP in May and all seemed well at the time, her routine had not changed, her sleeping habits had not changed...starting having some erratic behaviors and we found out she had a UTI this was in July, we thought we found out the cause of her erratic behavior she had been having... but the behavior never changed after antibiotics.
I spoke with her daughter yesterday and just basically said maybe we should find either a neurologist or maybe an actual Doctor to has dealt with Dementia in the past to help us.
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