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Hi everyone, I'm new here. My husband and I (in our 60's) have been caring for his mom (88) for nearly five years now. She was diagnosed with Atypical Parkinsonism back in July '08...has been "seeng things" off and on since the beginning, mostly little stuff, nothing scary or threatening. Then around the end of last year the hallucinations started picking up in frequency and eventually came to a head early February. Her neurologist put her on a very low dose of Quetiapine and so far it's been helping but I got the distinct impression they could come back again at almost any time. The Parkinsonism has also caused her to be confined to a wheelchair which may be an unfortunate blessing because at least we don't have to worry about her wandering off. She's still moderately functional and living in her own home - between husband, home health aide and me she's closely monitored/ visited several times a day. She's also taking Exelon now to help with general cognitive decline...lots of other issues (which I'll save for another day!) but would really like to connect with anyone else who's had experiences with hallucinations. The incidents back in February were frightening and stressful for ALL of us...would welcome any advice, suggestions on how to deal/cope. Thanks in advance.

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Hi virtual! I've seen a number of your posts about your problems with your dad seeing stuff on his fingers. My heart goes out to you...it has to be so frustrating and disconcerting. I have to say though, your story about the two hallucinatory people that got married and then partied all night made me laugh out loud! My MIL's visiting nurse told me last week that she has a patient who has "parties" out on his front lawn all the time...he knows the people aren't real but will tell her sometimes there's as many as 30 to 40 of them out there!

MIL is still hallucinating now and then but they continue to be benign. Just the other day she saw what she described as a "big piece of wood" lying in the middle of the road outside her house (small country road, very little traffic) and a number of children playing around it, "rocking" it back and forth and "pretending like it was a boat". She's still taking a low dose of Quetiapine (12.5 mg/day) and it seems to be helping....so far...(keeping our fingers crossed!) We're just taking it day by day. She sees her neurologist again in August....hoping we can maintain the status quo until then! ((Hugs!))
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Hi ladyinred - welcome! You don't specify in your profile that your mom has dementia. Hallucinations can be brought on by a number of things, including progression of disease, some medications or combination of medications, and infections (like a UTI). Whatever the case may be for you, I know how difficult and disconcerting it can be to go through this. As long as your mom doesn't appear to be bothered or concerned by the things she sees it's best to just "roll" with them...don't attempt to discredit HER reality because you won't get anywhere, and will likely just end up upsetting her even more. Try whenever you can to just acknowledge & reassure ("I'll take care of it. I think I know where I can find some bug spray...") and then move on/distract ("How about a snack?"). If you haven't already done so I would definitely let her doctor know she's hallucinating. If the hallucinations should ever worsen to the point where she starts to feel threatened or frightened by them try your best to stay calm and reassuring, and put a call in to her doctor ASAP!
It IS a very difficult thing to cope with...I hear you! (Hugs!!)
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Its been a couple of months since I posted on this topic. Dad's hallucinations continue and some have gotten quite odd! For about two months now he has complained that his fingers are falling off. I guess this can be considered an hallucination? He has also, in the past week or so, begun "winding string" with his fingers. He has always hallucinated that he has catgut or string on his hands, but suddenly he has begun pulling it up, or winding it perhaps on a "spool", and one time he told me he had "wires" on his hands. So this stuff that he seems to see on his hands has gone from catgut to string to wires. He's always doing something with it and is very obsessed with his hands and fingers. The normal "people" hallucinations have stayed about the same, though he did mention the other day that the seven foot tall man must be a night security guard, as he sleeps all day; two of the hallucinations have gotten married and they had quite a party afterwards as it was still going on the next day; the seven foot tall man has a wife as tall as he is; he still thinks walls and doors are falling down and will yell for someone to come help him hold them up. His neurologist says that as long as he isn't frightened by the hallucinations, or afraid that they're trying to harm him, that its fine. I really do believe that some of what he thinks he sees are left-overs from dreams, as many of them happen in the morning after he's had a little sleep, or after he wakes up from a nap after taking morning meds.

How is everyone else doing with their folks? Yaya51, how is your MIL? Have there been changes either good or bad? Have any of you seen progressions in the hallucinations? Hugs to everyone...
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My mom only has hallucinations w/ bugs - but it seems to be happening more and more frequently. By far the hardest thing I've had to deal with in life.
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My mom has dementia and has been hallucinating for about 6-8 months with the hallucinations getting more frequent. I have to say, they are very frightening and disconcerting but I too have stopped trying to bring her to reality and just play along (although, it makes me question my own sanity when I'm doing it) and it satisfys my mom and she moves back into "now" and we go on with normal activities. I mentioned to the doctor just so it is of record but she has been on antipsychotics for a little while but then went off them as they didn't make much difference.
My mom lives alone and is alone most of the time with little to no outside interaction (long story, but this is the way she wants it and we haven't been able to bring her around to other arrangements).

Hallucinations examples:
1. She has imaginary phone calls (no phone, though she has her hand to her ear like she is holding phone) and she conducts two-way out-loud conversations between herself and other party (for example, my uncle, a doctor, imaginary cleaning company, etc.)
2. She believes neighbor has a laser on her from across the street and it shines nightly thru her window; so often she sleeps in living room where the "laser" can't get her. (I verified with her one night and it is actually an outside post lamp that shines that she can see. It appears to go on and off -- but this is because a tree limb blows and obscures off and on. I showed it to her; but she still recounts the same story. I told her the police patrol and she shouldn't worry.
3. Imaginary boyfriend; quite vivid. She has imaginary phone conversations with him and also one day she told me about him and their trips together. She said he was in the house; I asked to meet him. She took me to her BR and there she had a body pillow under the covers and she patted him tenderly and talked to him and said "he isn't feeling well and isn't up to talking right now"; she tucked the covers up more "over the pillow" and kissed it tenderly. Broke my heart (she has not had a boyfriend and was widowed 3 yrs ago from my dad. She tells me about the boyfriend now and again then says "was I just imagining him? I don't know whats happening to me"

These are just some other examples, and I just make sure she isn't having scary ones and I go along with them now and try not to get creeped out. She has seen geriatric PCP, psychiatrist, neurologist and other than PCP, others want to add more drugs. She doesn't think they help other than making her drowsy and "not feeling right" and she has discontinued. I didn't see a difference. She is 90, lives alone and I"m not in favor of more drugs at this point if they aren't going to improve her quality of life.

My mom also has auditory hallucinations and thinks there is "singing" coming from the vents in the house. She has called HVAC and they have made repeated visits and can't find anything. She heard it one day vividly and wanted me to listen at the vent with her. I couldn't hear anything but the heat coming on and off. She still called the HVAC people and screamed they were incompetent and to come out again. They called me and I told them to ignore the request.
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Yaya51...hope things are getting better. My Dad and Mom still live at home. Mom has been caring for Dad since he was diagnosed (married 57 years!) We speak about the possibility of a nursing home, especially when she's had a really bad day or night with him, but things seem to blow over quickly and are good again for a while. I think Dad sees hallucinations just about every day, but there can be a period of up to a week where he won't mention them. Then he'll say something offhand about one of them and when questioned will say that they've been around, just not as much as usual! Sometimes he'll say that they kept him awake the night before, or that he woke up during the night and one was standing by his bed. He's even seen one of them get "familiar" with my Mom! I think he may also have auditory hallucinations at times, because he's mentioned seeing a pickup parked in the driveway and hearing the men inside talking or playing the radio real loud. Dad also has some crazy dreams as you mentioned your MIL does. He also believes he and Mom have a 'duplicate' house that they need to take care of. I don't know if that can be considered hallucinatory or not. He will have his 4-month visit with the neurologist in July. I plan to go into the visit with he and my Mom and ask some questions concerning respite care. Mom could use some time off! She doesn't drive so I take both of them wherever they need to go. That's about the only "off time" she gets. I know that one of the nursing homes has a memory care unit that offers respite care, as does Hospice, I think for up to 5 days. My Mom doesn't want the home health right now, doesn't like people in the house, though the doctor has said he'll request it if and when she wants it. What a life!...for both the patient and the caregiver...
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virtualhorizon, thank you so much for sharing...your dad seems to have quite an eclectic repertoire! It stinks that he has to go through this, but it must help a little that he's able to understand and accept his hallucinations, at least for now (knock on wood!) How is your mom handling it? Do your folks still live at home or are they in AL?
Most of what MIL sees doesn't really bother her - random family members, occasionally her deceased husband (which creeps ME out), animals, kids, cars and construction equipment - but she doesn't always grasp that it isn't real. She's been seeing stuff off and on for close to 5 yrs. now. They occurred very sporadically at first, and the kinds of things she usually saw were objects (gold pocket watch, non-existent bandaids on her arm) and small animals. We weren't even sure at first if she was actually hallucinating (because we weren't always present when it happened) or just misinterpreting. If we suggested to her she might have been dreaming she'd contradict us at first - "I'm pretty sure I was awake." But then soon afterward she'd start to second guess it.
When she was first diagnosed with AP her symptoms were primarily physical/parkinson-like: imbalance, gait, tremors. She HAD already experienced a few small hallucinations before that, but we were so focused on the physical issues at that time that I don't think we even thought to say anything to her neurologist about it...and I'm sure if the doctor asked MIL if she'd been hallucinating the answer would have been a resounding no. The "H" word was synonymous with "cukoo" as far as she was concerned so she wouldn't have admitted it even if she'd known. Because her autonomic system seemed to be involved her doctor was leaning toward a diagnosis of Multiple System Atrophy - that was about a year and a half ago. After everything that happened in February though she might be seriously considering DLB now. She plans on administering a number of cognitive tests next visit - more in depth than the usual 8-10 questions she asks every time.
Due to a moderate to severe hearing impairment MIL also experiences auditory hallucinations - mostly she hears a man with a very nice tenor voice singing hymns or patriotic songs. A couple of days after she started the Quetiapine I asked her if she was still hearing him, hoping maybe the med had helped with that too. "Oh yuh, he's still there...he's got a chorus with him now" *sigh* She also asked me how to tell the difference between what's real and what isn't - not quite as directly as your dad did, but that was the gist. Since the thing that had upset her the most was the fact that none of the people she'd seen would talk or interact with her, I told her she could take that as a clue...if she asks a direct question and the person doesn't reply back then he/she's probably not real.
Funny you should specifically list cats, dogs and snakes - MIL's seen those too. Dogs mostly, but several cats as well and at least one snake. About a week after she'd seen a "fluffy gray cat running around" her porch we had to take her to the eye dr's for her annual checkup...at the end of the exam the dr. asked if she had any other questions or concerns about her vision, and she said, "Other than seeing cats in my house that nobody else can see, I guess not." The look on the doctor's face was priceless!
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My Dad, age 79, diagnosed with Alzheimer's (but we're beginning to believe its Lewy Body) has had hallucinations for 3-4 years. This was one of the main reasons for his diagnosis of dementia as it was one of the initial symptoms. He's used to them and knows that they're hallucinations most of the time. He sees the same hallucinations all the time, with a new one creeping in now and then: a seven foot tall man who sleeps a lot; a woman with long hair who goes through the clothing in his closet; several small children; a man with a pig snout instead of a nose; contractors working throughout the house, especially in the bathroom; several people who sit on the couch and watch TV; a little girl who sells trinkets; people having a garage sale in the house; cats, dogs, snakes. He says the people he sees aren't very helpful. Most of them seem to have some type of deformity. He also hallucinates that the walls and doors are falling down. Today he asked me how to tell if someone is an hallucination. This was something new, and I'm not sure what it means. I told him that my Mom is the only person living with him, so anyone else is an hallucination, unless my husband or I are visiting. He said that he thought my Mom was an hallucination once. Hmmm. He normally just sees hallucinations; a few times I've seen him talk to one, either an animal or small child. I don't know if the hallucinations will go away further into the disease or if they'll stay with him.
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HelpingHand and jeannegibbs, thank you so much for your kind words and suggestions. For the most part the stuff she sees is benign - kids playing in the woods across the street, a dog lying next to her wheelchair - and we usually try to sort of roll with it and then redirect...eg. "hmm, interesting....when's the last time you ate? Would you like a snack?" and that usually works. After a few minutes go by she forgets. But that day in February she thought there were people in her house going through her belongings, and what aggravated her the most is none of them would talk or listen to her. She became very agitated, and although we did our best to stay calm and be reassuring she wasn't entirely buying it - wouldn't stay still, eyes kept darting around the room. She thought a woman was inside her closet so we parked her wheelchair right in front of the door, gave her a flashlight, waited until she said she was ready, and then slowly opened the door so she could shine the flashlight in and see for herself that no one was there. It helped dissipate that hallucination, but then she was afraid the woman was hiding somewhere else in the house. We got through it..I ended up coaxing her to take a couple of acetaminophens which usually make her drowsy, then helped her get into bed. She got a good night's sleep and was much better the next morning - still seeing things here and there but they'd reverted back to the more benign kind. That same evening she started taking the Quetiapine and things have been calmer since. Just the other night she asked me what that tiny little pill was for (for the 10th time) and I explained (again) that it helps keep the bad dreams away. She said "well I had a crazy dream last night" and went on to tell me she thought her eldest daughter had come to visit but couldn't get in the front door so she tried climbing in through the bathroom window. "Would that be a bad dream?" She asked. (Yup.) I just said, "well it certainly was a crazy one!" ;-)
Jeanne, I actually think she may have DLB. Her neurologist was leaning toward MSA a couple of years ago but the cognitive decline and hallucinations are more symptomatic of DLB.
Thank you both again...I feel so much better knowing I've found a place where I can connect with people who understand. (Hugs)
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My husband had Lewy Body Dementia (which is also an atypical parkinsonism syndrome, as I understand it.) Many kinds of dementia include hallucination but in LBD they tend to appear very early in the disease and they are often benign. Actually, some of his hallucinations would have scared me (bats in the bedroom, a dead body in our bed) but he took them in stride.

Keep her doctor in the loop. If the scary hallucinations come back perhaps a change in medications or in dosage can help.

Don't try to talk MIL out of what she sees. It is very real to her. For example, I asked my husband if the bats were bothering him and if it was OK just to let them be. If they were still there in the morning I'd chase them out. That was OK with him. I didn't tell him that there was no body in the bedroom. I just agreed to stay out until the CSI team came, and distracted him with something else.

Sometimes it is hard to tell whether the person is having an hallucination (seeing something) or a delusion (believing something is there without seeing it) but in either case it is their reality while it is happening, and no amount of arguing or explaining is going to change that.

My heart goes out to you. Non of this is easy.
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I had a loved one whom I was the full-time caregiver for, 24/7, in our home, who experienced extreme hallucinations from Alzheimer's.

We had a geriatric psychologist evaluate and make suggestions. The most important thing he said, beyond the prescribed meds, was to step into my loved one's world, and this would be what would help me to help her most effectively find peace, comfort, and safety from the world that she was very realistically experiencing.

Briefly to elaborate the psychologist gave me this example that summed it all up so well...

He said that he once had a patient that he would routinely treat at a nursing home. He said, one day the nursing home called him, and said this particular patient was hallucinating very badly, and was repeatedly screaming I have to get home or my parents will severely punish me, over and over again. No one at the nursing home could soothe this patient. No one understood her uncontrollable outburst, or what had triggered it.

Well, when the psychologist came in, he stepped into her world, instead of looking at her & evaluating her from his reality, he assessed her from her reality, by finding out where she was at, by asking some very basic questions (like how old are you, where are we at right now, what's happened, etc.). By doing this, he found out very quickly that this elderly women thought she was only 16 years old, and that she had been out on a date, and when she saw the time on the clock, she thought she had broken curfew, and thus her incessant screaming, I have to get home, I have to get home, my parents are going to severely punish me.

So he had determined based upon her perception and reality of what was going on, her response was in fact very logical of a scared teen wanting to please her parents and who was being prevented from returning home and making curfew. And it helped him to come-up with a very simple & logical solution that brought her comfort and peace....

So the psychologist then reassured her, that he had gotten an extension of her curfew from her parents and not to worry. The patient stopped screaming, and experienced peace again, because the doctor's goal was not to get the patient to enter his reality, but to achieve a resolution within the reality she was operating in.

No medicine could have achieved that, but just some good old fashioned empathy. However, this is not to knock behavior meds, because my loved one certainly needed them too, and are often times needed in addition to behavior management.

I know this is a simple example, but no matter how bizarre their hallucinations, it only causes more fear for them, if we don't acknowledge what they see & feel (as some people have tactile hallucinations in addition to visual hallucinations), and reassure them by giving them a logical solution of safety from whatever it is that is very real to them, and causing them very real terror.

I know these hallucinations are scary when you see your loved one having them, but we have to always remember we have to multiply that by a trillion for what it feels like to them, because they don't have the ability to rationalize and understand on their own.

I'm holding you and your family in prayer. I know, from experience, how tremendously challenging these behaviors can be for both you and your loved one. BIG HUGS!! :) And I certainly commend you for hanging in there.
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