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My mother and I are caregivers for my grandmother with Alzheimer's. Over the last few months, we've been dealing with a number of problems that seem to be typical...loss of time and place, feeling she isn't at home, etc. These problems aren't too big a deal and are mostly manageable with diversion and so on. However, she has terrible issues in the afternoons (often starting right after lunch) in which she believes she has a number of children (the number and age varies) and she knows they aren't at home, so she wants to search for them. When we try to keep her from going outside unsupervised - she isn't able to safely move from place to place as she's mostly restricted to a wheelchair- she turns aggressive and nasty, claiming we've hidden her (nonexistent) children from her and occasionally takes swings at us and even bit mom one day. It's shocking how strong she can get when most times she struggles just to get out of her chair! She makes up elaborate stories around how she got these kids and what they were doing each day to justify the things she says about them. She wants to search houses that don't exist and go to places that don't exist to find them. It's impossible to provide her any proof that these children don't exist, of course, and even if you gently correct her at the beginning, she forgets and the cycle starts all over again. She's threatened to call the police, have us sent to prison and also threatened to kill us. I've caught her searching the places where her guns used to be (long ago removed.) Does anyone have any idea what to do to calm this behavior, for her own good and everyone else's? We'e tried to be as caring and loving as we can (of course it's scary not to know where your kids are) but no amount of distraction seems to work. Telling the truth doesn't work. "Therapeutic lying" doesn't work. We're at the end of our ropes here and at the point of burnout and I'm really concerned about my mother's health from the stress of all the constant fighting. This happens on most days but doesn't occur to the same degree every day; when she isn't in "that mode" she's reasonably easy to deal with. We've been to a doctor and she has medication; it does help her sleep through the night which is good, but we need some idea for how to deal with the violent and nasty behavior since the medicine doesn't seem to be acting on that. We have another appointment with the doctor but it will be months before we can get in. Is there anything we can do, or is the only choice just to deal with it and hope for the best?

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It must be frustrating if mom is in anguish over her delusions. I'd ask for a psychiatric referral for a doctor who regularly treats patients who have dementia. Explain what she is going through. I'd explore medications that can reduce her anxiety. When I treated my LO's mental anguish, she became so much more content. Seroquel, may help for sleep at night, but, my LO's daily med for anxiety/depression (Cymbalta), keeps her calm most of the time and she's not sleepy at all. In fact, she also take Seroquel at night. Neither of them make her particularly drowsy though. She stays really alert during the day.

I'd also llook on You Tube for Teepa Snow videos on handling people who have dementia. She has good tips and demonstrations for how to go into their world and keep them calm. I'd caution about pointing out things to prove her wrong, dispute her, etc. since, it's not likely to work and even if they do, she'll forget.
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If you can get a daily journal going to record when the “ kids” happen and what else was happening within an hr or so of the “kids”. There could be something triggering this part of her Sundowning. And something you all maybe can have control over. Like TV program, sound of a bus, etc.

My moms 1st NH was nearby a college. From her room windows she could easily & clearly see outside and onto campus edge & student parking lots. By springtime she would go into rants about gypsy orphan children living in apartments upstairs. She was visibly worried about their safety & that somebody needed to take care of them as they looked tired... worried.. then it totally stopped. Then in fall, it started again & more intense. Fortunately she kept her worries to me & family rather than with staff. One day I’m driving out of NH parking and had to wait for group of college kids to pass by and it dawned on me. OMG it’s the gypsies.... boys with earrings, kids with tats, loud fluttery clothes, trudgeing backpacks, no parents around and their walking right below moms windows!!and as they turned the corner from an upper floor they would look like they disappeared into the NHs awning covered entrance. Moved mom across the hall where her view below the was the NH garden. When I asked her later if she still saw them, she gave me a very studied look and very matter of fact told me, “No, they moved”. Lol.
Mom had Lewy Body dementia and had had prior visual hallucinations when she was in IL, like seeing small nonthreating animals (cats, rabbits), and seeing carpet like cobblestones. Visual distortion is a hallmark of Lewy. You may want to read up on Lewy to see if your mom has other Lewy-like behaviors and let her gerontologist know as the medications for Lewy especially for psych meds are different.
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Try contacting the Dr even if you are only able to speak to his nurse. She should discuss it with the Dr.
Seroquil does not work for everyone. Sometimes it actually makes things worse. There are plenty of other things to try.
If her behaviour becomes uncontrollable which it sounds pretty close now don't hesitate to call the police and EMS. She can be taken to the ER and the Drs there can have her Baker Acted.
I am sure you would like to continue to care for her at home but the situation is becoming more and more dangerous for everyone concerned so it may be time to consider memory care. No one wants to do that for a loved one but it may be time to "bite the bullet" Do come back and let us know how things work out. Your experience can greatly help others in a similar situation.
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GardenArtist: Unfortunately I don't think she's at the point where she can mistake a doll for a person just yet, although I think that time may come soon. She also believes the kids are older/teenagers sometimes, so that's a problem as well. But maybe soon that will help!

gladimhere: We talked to the doctor about it once before and were able to get the prescription modified. We started with one 25mg tab, then 1 1/2, and now 2, one pill given at lunchtime and another around 4-5pm. It works for perhaps a week before she resumes the same behavior. She seems to adapt to the medication super quickly. I'm afraid if we just increase the dose, she'll just adjust once again. Maybe another med will help but sadly we can't get another appointment until November. I don't know if the doctor would be willing to work out details like that over the phone although we got the Seroquel prescription adjusted that way, so who knows?
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My mom started Seroquel 12.5 mg once a day, about 4:00, giving the med about an hour before her behaviors began. Over the course of three years on the med the dosage was increased to 75mg, still about 4:00 p.m.

How much is grandma taking? It may be time to adjust the dosage or maybe even try a different med. Check with her doctor.
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If she's legally blind, would she be able to recognize the difference between a large doll and a real child? The doll would obviously feel differently, but maybe you could find one that's "lifelike."
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No we don't, that's definitely something to look into. I wouldn't be surprised if that was what was happening, it may be that she needs some of that type of medication too. My grandfather got very poorly from UTIs a few times before he passed away so we had some suspicions here too.

Thanks so much for your help.
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My mom once had seven UTI's in eleven months. Then got a urogynecologist on board that prescribed meds that kept the infections away. Do you have home test kits for UTI's?
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Yes, she was checked for a UTI twice, once low-grade (treated) and once negative...she also has an appointment with a urologist, but it's another one with a long wait.

We haven't contacted the police at this point, but it's definitely something to keep in mind.
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Has she been checked for a UTI lately?

And have you notified the police that there is someone living in your home with dementia? It will simplify things for you if she ever does call the police. They still respond, but at least have an idea what they are getting into if they are called.
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Yes, she's also on Seroquel. We tried the "spending the night" scenario too, but then she demanded to go out to go to the house in question and get the kids, often with violent threats against the kids for daring to be out. Then she has to be stopped (she sometimes mentions driving and she's legally blind!) and the situation starts again. It's incredibly hard to break the thought process. She can't understand why we won't get on board with searching in irrational and unsafe places for them so that creates even more frustration and resentment. We can postpone it sometimes by taking her out for the afternoon, but it often resumes the moment we get home.
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My mom had the same issue, part of her sundowning. Giving her Seroquel each day helped alot. Other times I told her that child was spending the night with a friend, a real childhood friend's name. Or she went to the neighbor's cabin for a couple of days. Went for a bike ride, etc.... Studying for a test at the name of a high school friend's house. It takes creativity, for sure, and very difficult to deal with.

Is grandma taking any medication?
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