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She is convinced that the community is run by a political cult and that the caregivers are stealing from her, laughing at her and taking actions to frustrate her. She has delusions and some aphasia and apraxia. Her memory is unpredictable. Diversion and distraction do not work for long. If I say that I'll bring her concerns to management, she gets very upset because she thinks they will retaliate against her. She insists that she needs to get out. Any specific ideas for responding to these repeated concerns? Thank you!

Yes, ask her doctor about anxiety medication right away. My mother did well with Ativan.

Good luck to you.
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Phoebe216 Jul 15, 2024
Thank you. She has now been seen by her doctor, and he is recommending medication.
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Definitely yes to meds. It's merciful. Your LO cannot control their moods and paranoia anymore.
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Phoebe216 Jul 15, 2024
Thank you for the input. Thinking of it as merciful is helpful to me.
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I feel your worries! My husband is at home with me but often is paranoid about people coming in to steal his cameras (he’s a retired photographer). He is taking quetiapine and memantine which help but it still comes back from time to time. I tell him all is well, I’m here for him and I (continually) show him the triple-locked door. After a few minutes it eases. But does come back from time to time. It sucks for sure. But it’s our new normal. Sending Light your way. Hang in…
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Phoebe216 Jul 15, 2024
Thank you. I’m glad you’re able to ease your husband’s concerns, even if it’s temporary!
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Your mother is correct. Believe her.

Who told you that your mother has delusions?

Political cult? Probably not. But maybe's it is her way to define a population or group of people all acting in a way that is not agreeable to her.

Your mother might not remember what she had for breakfast nor if it rained three hours ago, but your mother will remember emotional assaults, physical injustices and know which people treat her well. This is the essence of her core.

Listen closely to her. Hold her hands and look her in the eye at eye level when you speak with her. Ask her open ended questions.

You know your mother’s cadence and misplaced words (and odd garble) she uses better than anyone.

Do you have an inventory of what your mother arrived with? Is anything missing? It could be that when her wash is being done, she sees that her clothes are not there and she believes that her clothes are stolen bc really, her clothes are not there.

is the facility well run, clean with strong resident-caregiver ratio? Good, fresh food? Do the caregivers actively interact with empathy toward residents or just feed and change them? Are there Other MC residents who are at or near your mother’s abilities? Activities that meet your mother where she is and that your mother enjoys? Does your mother regularly go outside in the fresh air?

What does your mother do that requires distraction and diversion?

Keep in mind that your mother used to do whatever she wanted, within her own power, and now she might be “told” what to do or told what “not” to do. Unless she physically is hurting others or wants to drink poison or grabs other residents things…. What is your mother doing that needs distraction?

Do you or someone visit your mother at random times (day and night) at least three times or more per week?

Dementia is a hateful circumstance. For everyone. And yet, with so many rewarding moments that you never thought possible.

Retaliation is real. Not all aides and caregivers are perfect.

Once you see for yourself anything that bothers you, do let management know so that something can be done. Management might not be aware. Be specific in what your concerns are. Be general regarding which caregiver. This way, management will put a blanket order for the caregivers and no single caregiver will feel threatened.

i hope that my experiences help you.
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MikeinTexas Jul 13, 2024
Getting into their reality by listening was a big lesson for me. My wife felt cut off from family and friends and she was frightened. This has allowed us to find ways to make her more comfortable.

Don't be afraid of trying an idea and failing. Everyone is different, Do your best. That's all that you can do.
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*Meds (talk to her doctor about putting her on or increasing anxiety meds)
*Redirect the conversation by asking her an off the topic question to get her off of the repeat loop
*Laughter (my mom said Elvis was hiding in the building) roll with it if you can
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Phoebe216 Jul 15, 2024
Thank you, this is helpful.
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Tell her "I'm working on it" - getting her moved - and that she's safe NOW (with you there). Be in present time as much as you can.

FOCUS keeping her calm - no matter what you need to tell her.

RE-DIRECT (conversation / her brain focused repetitive words/phrases/thoughts

TOUCH: massage, stroking - may help relax her. Head, hair massages are good and often an area that is overlooked (I'm a massage therapist). Feet, hands - all good if it feels good to her.

EDUCATE RE DELUSIONS: Read books / do Teepa Snow's webinars or see her You Tubes.

Gena / Touch Matters
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Phoebe216 Jul 15, 2024
Thank you for your input.
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Phoebe216: An individual suffering from dementia does not possess the capacity for logical thought processes.
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Phoebe216 Jul 15, 2024
Yes. I’m not trying to reason with her. It’s hard to figure out how to make her feel safe without her feeling that I’m contradicting her or don’t believe her (and I’ve been doing my homework…these are delusions, not things that might be true).
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Seems her thoughts are causing her great mental anguish. Talk to her doctor about medications to help her relax.
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Phoebe216 Jul 15, 2024
Thank you.
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Yes to meds to keep our LOs from being so wound up. I feel like how can my mom possibly be happy when she's worrying about something that's not real and calling me and freaking out about it, etc. etc.??

She started on Trazadone and it seems to be taking the edge off.
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Phoebe216 Jul 15, 2024
That’s exactly how I feel! Thank you for your response.
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I'm with WhatWouldYou above. It took a lot of work to find the right facility for my mother. Why? Well the first facility was abusing her. I got this from the nurse manager I befriended who suggested I get my mother out of there because the management was hiring for nurses "untrained people off the street" to save money. Mom had told me she was frightened, and I didn't listen. That nurse manager was quitting the facility for this reason. This facility was recommended by the state's ombudsman for elder abuse. They should have known, but how could they know if all they'd done was inspect the facility, as if it were a restaurant.
The second facility was recommended by a friend, it had a large central area for dining and socializing, good food, and qualified nurses. However, after I had outfitted mom's room with her favorite things and clothing, these things and clothing disappeared a week later. She was wearing other patient's clothes. A nurse told me that the laundry wasn't sorted because they didn't have the staff or the machines to do individual loads. Also, the rooms weren't locked and wandering was common so missing things were bound to happen. This was the best place I could find, and mom eventually adapted. But, you can understand why a patient suffering from Alzheimer's or dementia would become paranoid.
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WhatWouldNanDo Jul 15, 2024
Agree one hundred percent, etevans.

Every heartbreaking thing you experienced is found almost everywhere. Thank you for posting.

We are responsible for our loved ones and we each are naive, emotionally stressed, and physically exhausted when searching for the first memory care facility.

We believe the marketing people and believe what we believe that we see.

Until we don’t.

Excellent advice to befriend a compassionate nurse/caregiver.

The mother of a friend of mine was in a memory care facility and for months her mom was terrified to go to sleep bc a man was “coming in her room”. Management said that her mother was paranoid and delusional; that her mother’s room was locked from the hallway outside and that there were no males on staff at night. The facility ordered additional sleep aids. One night, my friend decided to stay overnight in her mom’s bed with her. And…, yes. A man opened the window, climbed in, over the loud air conditioner and walked through her room. It was a caregiver’s boyfriend coming to visit when her resident's were asleep. Caregiver was suspended and fired.

I write this, not to terrify you, but to keep you in contact with your loved one.

Not every facility is horrific.

I’ll say it again. At some point, especially in early, mid and early severe stages, your loved one may not remember breakfast, but they know that they are scared, anxious and angry. Perhaps it’s difficult for us to understand what makes them scared, anxious and angry. Perhaps actively listening and trying our best to interpret will help resolve negative situations or at least lessen them.

Our job is to do our best. Seek assistance. There ARE medications that can take the edge off without compromising abilities.

When diagnosis is dementia, and when diagnosed dementia people are thought of as no longer a traditional member of society, many people, including some facilities, believe in warehousing humans. I am not a fan of warehousing humans.

Please listen with your heart and mind.

Act accordingly. Your heart will guide you. Your responsible self will take action.

I hope that my experiences help in your winding journey.

two books that have helped me:

The 36-Hour Day 7th edition (a friend of mine was a nurse at Johns Hopkins and speaks highly of the authors) and The End of Alzheimer’s Program..: it’s a bit clinical, get through the science and act on the nutrition.

thank you for reading until the end.


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