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I'm a caregiver for my 92 year old Mom. In the past 4-5 months she has been having hallucinations and delusions on occasion. She has had 3 fairly bad "episodes" where she doesn't sleep for 2 days. I've taken her to a geriatric psychiatrist where she diagnosed her as having dementia. She instructed us to give her a very small dose of risperidone when she is having the hallucinations. I don't think it is working at all so they want to double the dose and give it at night, even when she isn't having hallucinations. They want me to bring her in any time I call for advice or have questions. Is this normal? Also, I don't know if I should make Mom aware that she has dementia (we weren't told what kind was suspected)? She is pretty sharp when she's not having an episode and I don't want to upset her and I want her to have the best quality of life she possibly can. Someone in my family called her crazy when she was having an episode so now she is constantly saying she's crazy, even though I reassure her she isn't. I'm worried if she knows she has dementia that she will think that even more. Am I wrong for not wanting her to know?

My mom was having a fairly clear day and she looked me in the eye and asked me what was wrong with her. I promised her early on that I would never lie to her. Having said that, I don't think she needs to hear the "D word" because I am afraid it would cause her to lose hope and just give up. I took a deep breath and paused a moment to gather my thoughts and I told her as honestly as I could that she has a memory problem and that it is kind of like if you have a big filing cabinet and you know what is in that cabinet and can go right to the file you want because there are neatly typed labels on each file. I said her brain was like that but somehow the labels have all come off the files and now her brain is having trouble figuring out what files it needs to access and where they are. I told her some files might be lost and never found but that some files would be discovered here and there as we go and maybe we can put labels on those files so her brain can find them again. She listened and said Okay, what do we do about this. I said take your medicine, eat your food with lots of protein, get plenty of rest and do your memory games like your crosswords and your games on your tablet. Try really hard not to isolate yourself from everyone by withdrawing. Fight to stay connected to us. She paused a long time and looked at me and finally said, "Okay, let's do this." I feel I still told her the truth, but I didn't take away her hope. All the things I told her she could do will keep her healthier and happier. They may or may not prolong or slow the downward progress, but they can't hurt. She might not remember the conversation tomorrow, but she did take it in.
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Reply to 12LittlePaws
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Moms66angel Nov 20, 2018
What a wonderful way to explain the situation! I may tell my mom that when she asks me again what happened. I was crying just reading it. Your mom sounds like a wonderful woman as well. Best to you both.
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Are all the hallucinations visual?

I feel a bit irresponsible asking questions like this actually - I'm not qualified and shouldn't meddle.

But I have to say that if I were you I'd have steam coming out of my ears by now. ALWAYS BE POLITE 😇 - of course! But it's quite possible to be perfectly polite and still take a cattle prod to your mother's doctors if need be.
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Reply to Countrymouse
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My mom had several strokes so I'm pretty sure it's vascular dementia even tho they didn't tell me either. Why is that? My mom is 91 and would say she was crazy or stupid. I tell her she's not, touch her and gently explain about the strokes and memory loss. She feels better knowing what caused it. She's also had a few hallucinations and I've done a lot of crying, but I listen to her and do my best to make her feel better, and that makes me feel better.
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Dear Need Advice,
Yes, it is usual, customary, and reasonable (UCR) for the psychiatrist to have the patient brought in to be seen when you have questions or a change in medications is required. Especially at first.

People are different. Some do well with the facts, more information, and would normally seek that out. Others are content with less information, and can go through life not knowing. It could be your Mom is repeating the word crazy instead of really thinking she is crazy. Maybe you can gradually introduce another word to replace "crazy". For example: You are not crazy, you just had a "senior moment".

It must be confusing and painful for you to watch your mother decline in this way.
You are a good person to want to protect her.

Did she start any other new medications in the last 4-5 months?

Was she checked for a UTI at her regular physician's? In the elderly, a urinary tract infection does not bring the same symptoms, and a patient can have hallucinations with a UTI. Do not accept a dip stick urinalysis, get a more thorough testing. imo.

It is also common for physicians to think differently about the PRN (as needed) use of a medication, versus the regular dosing to build up the med to a therapeutic dose. Some psychiatrists are more familiar with "off label" uses that could possibly benefit the patient's needs. A lay person may describe this as "thinking outside of the box". These are all questions best asked of the psychiatrist, and a second opinion could help.
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Reply to Sendhelp
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I think it depends on the person who has the dementia and the family circumstances. My mom was present when the doctor diagnosed probable Alzheimer's. I have promised that I will treat her as the intelligent adult she has always been, so I do occasionally discuss the Alzheimer's, especially when it has an impact on something in her life that needs to be changed or addressed, such as when I had to move her to a retirement home. I'm new to this, too, but it seems reasonable to have to bring your mom in when there is an issue with the medication not working. The financial aspect, unfortunately, but a reality, is that it allows doctors to charge more for Medicare services. The journey down this road is a tough one for the person who has dementia and for the family, but I'm starting to realize that the choices you make have to be the ones that work for you, even if they are not necessarily the way someone else would handle the situation.
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I have never heard of using medications like this prn (as needed) as a long term strategy, it is my understanding that they must be taken daily in order to build up a therapeutic level in the body. Are you certain you are understanding the psychiatrist's instructions?
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She likely has some idea of that already as it sounds like she has some awareness that things are different than they used to be. Saying it isn’t critical. You could always remind her that she is 92 and may have more forgetfulness as that is common. Her brain has been around a long time... but that she can just keep doing the best she can. It’s unfortunate about someone using the “crazy” word but medical issues can cause symptoms like these even in children ( like with high fevers, etc) so she’s not alone in learning how to deal with new bodily issues.

Overall, she needs assurance of her safety and gentle reminders. My grandma is 98 and can be lucid sometimes but more often lately she just needs reminders, assurance, and lots of love. I tell her she is forgetting some things and that we’re trying to keep her safe which is why she is in assisted living. That seems to work along with lots of reorientation of things that I suspect she’ll be more likely to recall. Take care!
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Reply to Target456
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When my mother wondered whether she was "going crazy" I said "no" and just mentioned that some changes have taken place in her brain that have caused her to become unable to remember things. I added that being "crazy" implies being completely out of touch with reality, which is not the case with her.
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Reply to jacobsonbob
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What investigations has the geriatric psychiatrist done?

Is your mother's health otherwise pretty good? (making allowances for her being a 1926 vintage!)

As you say your mother is pretty sharp when not having a crisis, and she herself is seeking explanations for what is happening, then I personally feel that it is wrong not to discuss her condition with her. But at this point, depending on how reliable you think that diagnosis is, I don't think there's any need to drop the D word on her specifically. Ask her what she thinks, ask her about how she's feeling, reassure her that she and you and her doctors will get this figured out. But don't tell her any lies.

And tell that family member he's not too big to go over your knee and get spanked.
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clb2930 Nov 16, 2018
Mom’s health isn’t great. She’s got fairly severe copd and her diabetes isn’t well controlled but we are working with her primary doctor on that. I don’t think she really knows anything is going on. She talks about things she’s hallucinated about after her episode is over like it was just something that happened and she’s fine with it. (the last one was someone made a huge mess in the kitchen). That’s why I’m not in favor of telling her. The psychiatrist did the memory test (which I flunked) and asked her some questions. No other diagnostics. Mom has no idea why she’s there or what she’s there for.
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So, the psychiatrist first prescribed this med "as needed" and when that didn't work, wants you to give it regularly. Are you doing that?

Psychiatric medication management on the elderly is often a trial and error procedure.

Call mom's pharmacist and get an explanation of how this drug works.

Did the psychiatrist order any imaging of mom's brain? Do any testing, like the draw a clock test or ask her to remember 3 words, ask her who was President, and if she knew where she was?
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Reply to BarbBrooklyn
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clb2930 Nov 16, 2018
They just told me to increase the dose today. Before we were just to give her the pill as needed. So we are starting that tonight. They have done no imaging, just the questions, remembering 5 words and there was one written “test” that I didn’t see. She did ask lots of questions to determine if she was depressed.
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