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My mother is 86 and in the late stages of cerebeller ataxia. (Atrophy of the cerebellum) She has been unable to walk for over 3 years and began having visual and audio hallucinations about 2 years ago. Over the last year or so, she has been seeing ants, fleas and bugs in her bed.
Lately she sees bugs in all her food. It is so bad that she struggles to eat anything and chokes from eating too fast before the bugs eat it all. Her neurologist is most unhelpful and would not tell me anything about what to expect. She has been taking Clonozepam and Buspirone for year to mask some of the symptoms of loss of motor control.
I am running out of ideas about how to get her to eat and would appreciate any educated advice. Here are some videos from about 3 months ago.

dropbox/s/1mp5anwy3lif2h3/3-Food%20Bugs.mov

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72 reasonable good health, on trazadone for sleep, taken at night, this was 4:00pm. Got into my car which was parked on the 3rd floor of a concrete parking structure, 90 degrees, 90 % humidity, started car and saw dozens of small ants moving around on a towel I had covering the other seat. Shoved towel on the floorboard and looked to see if there were any on me. did not see any. Got home and cleaned out right seat and floor and could not find a single ant. Wow, I looked for about 30 minutes to see if there was a single ant or dead ant and nothing.
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I have an uncomfortable feeling you'll already have thought of all these, but just in case you haven't the notes below are from the NHS website, which also explains that later age patients will essentially be treated in the same way as people with the inherited condition. I know it says 'pain' specifically, but it seems to me to go on to describe a broader range of sensations. Hope this gives you something to discuss with your mother's medics, maybe? I have no idea what brand names the drugs mentioned would go under in the US - but I'm sure wikipedia would be helpful there!

Neuropathic pain

Damage to the nerve endings can result in nerve pain. The medical term for nerve pain is neuropathic pain, which is often experienced as a burning, aching or shooting pain, or sometimes tingling, in certain parts of the body.
Traditional painkillers such as paracetamol or ibuprofen aren't usually effective in treating neuropathic pain, so you may be prescribed a number of medications, such as amitriptyline, gabapentin or pregabalin.
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Thomas, it sounds as if she must be getting that sensation from somewhere. Did you say the neurologist was unhelpful? :( Is this symptom reported by other sufferers? I think I'd be looking for highly specialised advice on this: is there a support group specifically for cerebellar ataxia?
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She likes the taste of liquid soups, but insists bugs get in through the microwave. There are no bugs in her coffee though. As long as I take away microwaved food before she starts seeing bugs in it, she seems OK. The biggest problem is the ants. She has lotion and aloe vera gel in a box in her bed she can use when needed, but the ants sting through her clothes.and nothing can stop them, or her screaming when they attack her.
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No. She says someone is telling her someone is telling her someone asks her not to use whatever the red sheets rad are, whatever color she is using. The sheets are the ones she preferred when my dad was alive, She doesn't know who it is. Reason is irrelevant. I started giving her the new anti-psychotics two days ago. No. No notice yet.
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Thomas, if you were to eat with her, eating the same food (I eat a sandwich, now you eat a sandwich) could that help? Does it also apply to liquids, like soup, proper custard?

I'm not being flippant - does she say what the bugs are telling her? I'm wondering if they say anything that could be useful in knowing how to reassure her. I'm not suggesting you pretend you can hear them too, just looking for clues about what's going on in her head.

This is also a serious question: how is her appetite? Is it easier to get her to eat when she's hungrier? I know you can't be there all the time, but could you work with the staff to time main meals for when you can be around?

Poor lady. I hope things improve for both of you.
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Boy Thomas, I feel for you. I have two suggestions, but I have no idea if they would work. First, one thing some parents do for toddlers who are afraid of monsters is to get "monster spray". Then they make a big show of spraying away the monsters at bedtime. Or they let their child have the spray bottle to handle it themselves. I wonder if you could get a spray bottle at the Dollar Store and fill it with colored water and a bit of vanilla or some kind of scent and slap a "Bugs-B-Gone" label on there and "spray away the bugs" for your mom.

The other idea would be to have some friend come over who's a "Pest Control Specialist" and have them "treat" your house for bugs. Move your mom to another room while they "treat" her room. Put some kind of spray in there so it smells different. Have the specialist tell her that her house is now bug proof. Make it as elaborate as you'd need to in order to get her to believe it. I don't know if she'd remember it the next day or not...

Again, I have no idea if either idea would work, but I'd start with the Bug-B-Gone idea. It can't hurt. I can't imagine how frustrating it must be for you...
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Like I said, the ants can come out within a minute or two of laying her down on clean, fresh sheets after a bath. She says she can kill them one at a time, but it takes a while and they always co e back. She says she can talk to them too.
She can't identify any of the faces she sees, but thinks I know who they are. A woman used to come sit on a picture frame and sing to her. She hated her because it kept her awake all night and she kept yelling for her to shut up and stuffing her ears with tissue.
There is only so far I can go pretending to recognize her hallucinations. If I can see them, why won't I get rid of them? I don't want to be in that position.

I found one of those personal drink blenders on clearance today. There are several containers that can seal out the bugs and let her use a big straw. I suppose that is the best I can do. I wonder why bugs are such a common hallucination as the brain detetiorates. It seems like a primitive reflex when control is lost. I haven't been able to find much information on it.
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when mom woke up crying and thinking diotomecious earth in the home was burning her i redirected her to the possibility that shed lain and slept hard and was sweaty, maybe a quick shower would help. we took the shower and it somehow stopped the burning sensation. you dont accept their reality with them at 100 % , you sure dont change their minds -- you redirect and find a compromise ( imo ) .
( wed had a battle with bed bugs but were already winning it by this point )
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I don't agree with accepting too much of their reality. There is no there there and there is no going back. It is an endless rabbit hole with no exit. If I pretend to see her hugs, then I am responsible for getting rid of them. Otherwise, I am just being cruel and paranoia escalates. You lose their trust completely if they think you are part of a conspiracy to torture them. That is the cruelest choice.
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Oh, and have you seen the new anti-bug place mats? They keep bugs away from anything placed on them for 35 minutes. They aren't like anything you have in your home now, but they are available at Target, Walmart, etc. :)
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Reason is pointless with hallucinations. I sure get that! But I like JessieBelle's suggestions for sharing her reality. There are bugs in her bed. Doesn't matter if you can't see them. Doesn't matter if there is ice outside. Doesn't matter if you have just fumigated. There are bugs in her bed. I like that you tried the ant traps! I'm sorry it wasn't more effective. But rubbing a nice anti-bug lotion on her when she goes to bed is worth a try. Accept her reality. There are bugs. Try to help her deal with it.

Hugs to you and your mom.
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She has never had much imagination and is very hard-headed about her opinions. I have not been able to get her to see her hallucinations as anything other than what she insists they are. Her older brother and two of my cousins were not able to see them either, but that didn't help her accept their unreality. I got some ant traps to set on her bed She was interested in them and thought they might work, but had no effect after a few hours.
Even with fresh sheets right after a bath, the ants came out within minutes. Snow and ice outside cannot convince her that there are no bugs in winter. Reason is pointless with hallucinations. Reality is only real when it is shared.
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Thomas, I wondered if there was anyway to work with her hallucinations. If she sees bugs, maybe they could be good bugs that are nutritious and don't eat the food. They were put there to give her the special nutrition she needs? The bugs in her bed and the ants stinging her are terrible. I wouldn't know what to do, but my heart goes out to her. Maybe you can use an "anti-bug" lotion on her skin at night -- something that would be soothing for her skin and to her have the property of keeping the ants from biting. I don't know if this would help, because I know almost nothing about cerebellar ataxia. I hope you can find something that eases her mind so you can enjoy more time together. I know it is a difficult disease and you are wonderful to be there for her. Big hugs to you and your mom.
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I only asked if she was seeing bugs to make it clear on the video. This has been going on daily for well over a year. I keep trying to tell her she is having hallucinations, that they are not real, but she refuses to even consider they are not real. I have heard "medical experts" say you should not try to convince them they are not real and not leave them alone. Obviously, they have had no personal expetience. She often wakes up screaming at night because the ants are stinging her.
I do have some experience dealing with hallucinations, my brother has paranoid schizophrenia with psychosis and went off his meds a few years ago. This is not related. Bug hallucinations are quite common with dementia. Cerebellar ataxia is rare and is hereditary, but ony passed on through females. The cerebellum is also near the visual and auditory centers. I am only guessing that they are related to her seeing faces, bugs, etc., and hearing them also. She tells me the bugs talk to her and sees nothing unusual about that.

I do use a travel mug and large straws for juices and smoothies. I suppose I will have to liquify everything from now on. Just as well, she had several more teeth pulled last month due to periodontal disease. The nursing homes in Oklahoma are rated "F" and I could not leave her to minimum wage caretakers anyways.
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I watched the video and hear a voice repeating "do you see bugs?" which is downright cruel power of suggestion. It might help if you told her she sees strawberries or something pleasant. Please.
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sharper lighting in the room maybe ?
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The poor lady! Wouldn't it be dreadful to see bugs in your food? I hope her doctor can narrow down the possible causes and take corrective action.

Meanwhile, would she enjoy taking some of her meals as a smoothie drink? If you serve it in an opaque container with a straw, so she never has to look at the food, would that help?

This is a perplexing problem. Do let us know of any progress you make. We learn from each other!
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Hot chilies, nutmeg, moldy rye bread, sea bream (fish) and our old friend coffee are five foods with a history of causing hallucinations.

.Antidepressants such as amitriptyline, imipramine, trazodone and amoxapine can cause hallucinations,
.Digoxin can cause formed and unformed visual hallucinations,
Propranolol can cause visual hallucinations,
Benztropine and trihexyphenidyl can cause visual hallucinations,
Hallucinations are reported with cimetidine, clonidine bromocriptine, levodopa, methylphenidate, antihypertensives, corticosteroids, antineoplastic and antibiotics.
If she is taking any of these call the MD and get meds corrected.
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