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Mom (94) has been in a memory care unit at the AL facility for about 18 months. Up to this point, while she has experienced some mild hallucinations (e.g. seeing an object that wasn't there), she's now telling me about staff taking her away from her bed for the night and making her sleep somewhere else, in an effort to "control" her and some other residents. She told me they are also trying to control her through her telephone in the room. Someone who visited from her church told me (only after I asked if she's noticed anything unusual in Mom's behavior, it would have been nice to have been told when it happened ) that Mom said the staff pulled her into the hallway, beat her with a rod and called her names. Needless to say, none of this is accurate, I live close by, I visit at least twice a week and walk in at all different times. Aside from the lack of any "physical" evidence of abuse, the staff there is nothing but caring and patient with her and all the residents. In fact almost every staffer I meet talks about how sweet she is. Mom is very meek and anxious by nature. Even when she wasn't in this decline I used to have to encourage her to speak up for herself, ask for more help going to the bathroom, etc. (she has some mobility issues). Now she won't share any of what she's experiencing with anyone but me or the few other visitors she gets. She's afraid of everyone and is pulling at her clothes, ripping tissues, etc. It's so heartbreaking to see her like this. I contacted the Director of Nurses and the social worker and told them what was going on. They are going to do the medical things - check for UTI, bloodwork, etc. I think this is beyond a UTI, though I know that can enhance symptoms. I told them she probably won't admit to any of these delusions to anyone on staff. I'm hoping there is some medication that can help. But also I wonder if anyone else has been through this with a loved one, and can offer any ideas (or just some empathy!) for dealing with this issue...

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This is so sad. One thing that I've read about helping folks with delusions is to validate the feeling. So it's clear your mom doesn't feel safe. " Mom, I'm so sad that you dont feel safe here. " "That must have been a scary feeling". "Will you let me look into that for you?".

My mom's several geriatric psychiatrists all told me that using psychiatric meds in dementia patients is something of a trial and error thing. There doesnt seem to be any real science behind what works for whom EXCEPT that it's a known fact that Haldol should NEVER be used in patients with Lewy Body dementia. It's probably worth it to make sure that your moms neurologist has no suspicion that she has LBD.

Good luck and keep us posted. We care!
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ESP505 Apr 20, 2019
Barb:  Thank you so much!  I actually knew to validate her feelings, rather than try to convince her otherwise - the fear is real.  I get that.
Also appreciate what you said about the psychiatric meds.  That's all good information.
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I'm so sorry that this is going on!. Why a Psychologist? Do you live in a state where psychologists can prescribe?
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ESP505 Apr 19, 2019
The psychologist cannot prescribe as far as I know but the APN can...so as long as they communicate she can get medication - I just need to ensure they are communicating..,gotta stay on it..,
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If she has Medicare, she has coverage for an evaluation for these issues. Don't wait for the APN to suggest this; sometimes medical folks are hesitant to suggest mental health evaluations because of stigma, or the thought that it means that it means that they think the issue is "all in her head". In the case of someone with dementia, we already know that mom's brain is broken and she is now displaying symptoms of a change in mental status. A change in mental status ALWAYS needs to be investigated from as many ways as necessary.

Your mother's psychic pain is just as real as if she had unremitting physical pain.
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ESP505 Apr 19, 2019
Barb: thank you...I’m so with you about her suffering being as real as anything physical. I’m advised that a geriatric psychologist ( not a psychiatrist, I know the difference) spoke to Mom this week and she (Mom) was “not forthcoming.”’ No surprise there. Good news is that this is someone who has evaluated her before so she can see the difference. Bad news is that We’ve run smack into the Easter and Passover holiday so I’ve not been able to have a full discussion with her on her status. Sigh. But hoping to get the medical evaluation by early next week. I’ll see her Sunday, she’s a devout Catholic so Easter means a lot to her, and it will give me a chance to put “eyes on.” Until I can have a full discussion with the psychologist next week. Sigh again.
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Does your mother have Medicare? Are you in the U.S.?
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ESP505 Apr 19, 2019
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I couldn't agree more strongly with the approach Barb suggests and your own thoroughness.

This point is perhaps just a sign of the times, though: do please bear in mind that it is not *impossible* that somebody is making your mother afraid. How are interactions monitored, especially at night time?
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ESP505 Apr 19, 2019
The facility has an RN on staff 24/7, right down the hall from Mom's room. The RN has supervising the aides on all shifts.  I may not have been entirely clear about the story of taking her "somewhere else" away from her bed - it wasn't another location within the unit, it was to another facility, in Mom's mind...along with about 10 other residents.  That didn't happen.
I'm not suggesting that she's never expressed discomfort with an aide who she thought was brusque with her, over the years she's been there, and I always have reported those kinds of things to the supervising RN or the DON, and they've always taken appropriate steps to address these things.  This is different.
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Has your mother been evaluated by a geriatric psychiatrist? That would seem to be the obvious road to take and I'm wondering why the facility isn't suggesting it.
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ESP505 Apr 19, 2019
Good question, Barb, thanks.  The APN who was going to visit her on Wednesday to do the medical workup may recommend that. I'm waiting to hear back from her, and they were going to see if her insurance will cover a mental health evaluation as well.
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