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Her primary doctor says there isn’t anything they can do. He says there is nothing we can do to convince her that they aren’t there!

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My husband suffered w/ this….dx as delusional parasitosis….3 doctors & 6 months later. Finally a Psyciatric dr gave him an antipsychotic that slowly stopped the torture he endured. The several dr’s we consulted first had heard of it but never witnessed it in a patient. My husband had “engineers & trains under his skin & fish hooks caught in his belly button”…& much more. His entire chest, arms & legs were covered w/ bruises & scabs where he had tried to pick the “creatures” out. Today, 18 months later, he is free of them & the antipsychotic is no longer needed.
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WendyElaine Sep 2021
Wonderful result!! But sounds like a very tough journey.
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Their skin is immensely thin and fragile. So long sleeves and moisturizer helps. If she picks while sleeping, try putting cotton gloves on her overnight. If this seems to happen no matter what type of distraction she is given, so that she picks automatically it may be only a medication will help. My mom was on Ativan for a while. It helps quell them from doing repetitive behavior quite so intensely. It reduces agitation.

To me, what might can work will be very very interdependent on how far into her dementia she is. If it’s really early and she can go and do activities (like pay attention & watch a movie, do knitting, read) so that she’s occupying her mind on other things, that is way different than a mom who cannot remember 5-10 minutes ago or that she ate breakfast 3 hrs ago. If she cannot be at all distracted that way different than a mom who can.

Could it be that your mom is actually not early dementia but more end or mid stage? Has she been able to get any testing done in depth to somewhat determine what type of dementia she has? Is she getting more than the clock drawing test done each and every visit to her MD? I ask cause I found that most gen practice doc or even internists, well they to lump “dementia” into 1 category. But in reality if they have Alzheimer’s it’s different than Lewy Body or FrontoTemporal. The drugs are different too. Like if she’s Lewy, and she’s on Aricept, it’s contraindicated for Lewy. But Excelon is the RX for early & mid stage Lewy & it worked well for my mom who had Lewy. Hallucinations for Lewy are very common. For Alz not so much but they all get “false beliefs”. Knowing which one she most likely has ime makes a difference as to how to deal with stuff in early to mid stage.
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Schedule an "emergency" office appointment for her to have a full dilated eye exam to rule out vitreous floaters or other retinal issues such as detachment, macula degeneration or bleeding. There are types of macula problems that will introduce illusions. Once cleared of eye issues, if the imagined problem still exists, offer her an alternative. Rather than uselessly trying to reason and discount what she believes, offer to remove the "worms". Sit with a jar and have her point out each for you to take away, telling her you will put in flower bed. Then apply her favorite scented moisturizer. You may even offer to do that first to "make the worms go away." Sounds silly but discounting what she is experiencing will result in agitation with clawed arms and hands. God Bless.
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I think that I would buy a cream and tell her it is worm poison and it needs to be covered after it is applied, so long sleeve shirts are needed. Oh and it only takes a couple of applications.

Print a label and secure it over the cream in case she wants to see it.

I would also be checking around for a geriatric doctor, I think there are meds that can help calm her down.
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Get her to see a psychiatrist. He is more suited to dealing with hallucinations.

Sometimes, older folks "pick" because their skin is dry and irritated. Dry giving her lotion to smooth on her arms so they feel better.
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Hi - my mother is 89 with advanced Alzheimer’s. We had a similar issue with delusions (leading to severe skin picking), anxiety, lack of appetite and other issues. After trying several anti-depressants and anxiety meds which only made her sleep more our integrative doctor recommended Mirtazapine/Remeron. It helped a lot. Skin picking disappeared. She regained her appetite and actually enjoys her food (although she lost her sense of taste 5 years ago). It significantly reduced her anxiety and depression and helped her engage more. She still sleeps a lot but is much better able to engage. Another symptom that was helped was hyper-sensitivity to touch (not allowing us to hug or kiss her) and extreme anger.

Just to be clear - it hasn’t solved everything and there are times (especially in the bathroom or getting in or out of the car) when she is anxious and high strung. But the family would agree she is probably 80% better.

She was started on 15 mg., then it was increased - first to 30 mg., now 45 mg., within a pretty short timeframe without side effects. It has been a tremendous help.
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I’ve experienced something similar a few times with family members. I’ll brain storm with you a bit in case my experiences can help.
Picking is an issue for many with dementia. I’ve never read or seen anyone pick and hallucinate. But I’m not a health practitioner, just a family member.

hallucinations.
One time was a hospital delirium. It went away on its own.

A second time with a different person, it was sodium levels being off. This after a head trauma. Once the sodium was balanced, the hallucinations went away.

The third time was a person going through detox.

picking
CBD oil helped DH aunt. I think I noticed she would pick more when anxious. We used the drops under the tongue. But I’ve read here on the forum where some used the gummies. I’ve never tried those.

About the sleeves, it might help as aunt didn’t pick any area not readily accessible but it’s hard to cover up the face and ears. She did pick the lower arms but her ear seems to be the most frequent.
In your moms case, part of her preoccupation might be seeing the worms so hopefully she won’t start picking her face.
There doesn’t seem to be an accepted or standard medical treatment that I’ve been able to find for picking.
Aunts geriatrician was fine with whatever I came up with. She was sympathetic and would discuss it with me but there doesn’t seem to be a known treatment for the picking. The CBD oil I suspect had a calming effect. I also tried allergy tablets, band aids. When asked about it “what happened to your ear”
“Oh, I did that”, she would say.

Of course, checking for a UTI is always on the top of the list for any accelerated dementia behavior as it can be the problem.

I have another aunt who has Parkinson’s and probably Lewy Body dementia. She did hallucinate at one point. She’s bed bound and non verbal these days. Her daughter is who introduced me to CBD oil and she gives it a lot of credit.

What I’ve read about hallucinating with dementia seems to indicate mid to late stage not beginning stages. Does your mom see a neurologist?

Take care of yourself. Some of the behaviors we seem to just have to accept. If this upsets your mom, I would try for a geriatric psychiatrist to get her on something to calm her. In DH aunts case with her picking, it was only me it bothered. There are side effects to the medications that can sometimes cause dizziness or falls so we sometimes have to choose the lesser of two evils. But well worth checking out.
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Wandusi: Imho, perhaps she needs to see a neurologist.
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Talk to her doctor about Gabapentin it helps with nerves to relax them. Why a doctors would day there's nothing they can do I know they can help I take Gabapentin for mine.
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Maybe her skin itches or burns so she thinks it’s worms in her dementia state. Sit with her and rub some moisturizing lotion on her arms and legs . Tell her the lotion will keep “ them” away or keep “ the feeling” away. You will not be able to convince her they do not exist sadly. 💜
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