What happens when they have begun to have hallucinations?

I have Lewy Body and Fronto-Temporal Dementias. Hallucinations are a part of Lewy Body Dementia and can be exacerbated by other dementias as well as some medications, fatigue, health issues, and other problems.

As a caregiver, you MUST understand that hallucinations occur in the patient's brain -- in our reality, they are not a part of your reality. They are caused by a malfuctioning of the brain, whether it be a side effect of medication, fatigue, lack of sleep, or actual brain damage (as in the case of dementia and tumors). They occur without warning and we have no real conscious control over them, although most of my visual hallucinations disappear when I look directly at them.

My neurologist, like most other medical practitioners, don't recognize anything other than "hallucination"--false sensory input (could be sight, hearing, feeling, tasting, smelling). In my own experience I like to categorize them a bit further, into "misperception"--experiencing one thing but thinking it is something else--and the traditional hallucination--experiencing something that is completely false.

For several years I have misperceived things I see (early on I mistook a barrel in a neighbor's yard for Thomas Gainsborough's The Blue Boy, not the painting, the boy in the painting). Then there was the bear in the back yard (a corner shadow), the buffalo grazing on our empty acre (an old trailer filled with junk), and a lot of other things in shadows and from the corner of my eye.

Then there was visitation by a British Revolutionary War soldier, complete with wig, ruffled shirt, red coat, blue pants and white leggings, but no face or feet (I last saw him standing behind my doctor during a visit). I have also had visits from the Kentucky Fried Chicken's Colonel Sanders, first as a boy of twelve (I don't know why 12 was the age), then as an older man (30ish), then as we see him in commercials; in each instance he was dressed in his white suit and black tie, but as a boy didn't have the moustache and goatee (I don't know why).

More recently I have hallucinated my granddaughter darting from room to room (she wasn't here), a small white fluffy dog darting from room to room (we have a black dachshund), and a couple of nights ago our dog became a large black wolf until I turned the light on. I also frequently hear people talking, as though the radio or tv is on in another room and turned down low enough to be indistinct; yesterday I distinctly heard a fairly deep male voice call me "PaPa" (as my grandchildren do), turned to respond and our dog was standing looking at me! (does she really talk?).

Only twice have I been frightened by the hallucinations. Both occasions were at night, both began as voices that woke me up and were accompanied by things that moved in the shadows. The first time our grandaughters were here and I got up to see if one had the tv on; it wasn't, the hallucinations followed me from room to room, my wife and dog were asleep so I went back to bed and to sleep. The second was essentially the same thing, though the grandaughters weren't here. This time the voices became louder and softer when I moved through the house. It wasn't really frightening, but I did have the urge to leave to try to get away from the voices; instead I took an extra xanax and went back to bed.

What should you, as my caretaker or companion or visitor do?
Rule 1 - DON'T ARGUE. It is MY reality and you'll never convince me otherwise.
Rule 2 - Be loving and supportive. As much as you may want to, don't become impatient and shame or belittle me (remember Rule 1)
Rule 3 - If appropriate, express interest--get me to talk about it (there may be something in the room you can remove or change that will end the misperception)
Rule 4 - Join in, if appropriate. My wife and I joked about the soldier (I'd tell her he's here, she say Hi and ask how he was doing). It made life so much easier.
Rule 5 - And this should really be Rule 1 - Be sure I and everyone else is safe. If I think someone is in the house keep the guns and knives out of reach (don't forget the baseball bat). Keep everyone else away from me. Call 911 if necessary and get away from me yourself (I may be 73 years old, but hallucinations can cause adrenaline rushes and if you add that to 6'2" and 290 pounds it will take a lot more to subdue me than my 5'4" 100+ pound wife).
Rule 5 - With any change, ALWAYS consult with the doctor. Could be normal disease progression, could be med side effects, could be need for med adjustment, could be an infection. Also, if the patient is end stage, seeing and conversing with deceased people is not unusual.

I'm sorry, I did not mean to ramble on so long. I usually find my visual hallucinations somewhat entertaining (my neurologist once suggested I take out a subscription) and my auditory hallucinations are annoying.

But such is life on the Lewy Body/Frontal Temporal roller coaster.

Whatever you do, don't tell your mom what she is seeing is not there. I found that talking about what she was seeing, people in the bedroom, etc, would not hurt her and that i would stay with her to make sure she was ok, leave lights on, pray, watch something light on TV. I noticed that when my mom asked to go to bed early, she had less episodes, if I tried to keep her up, it was worse.

If she was on gabapentin or (neurontin), that is well known for causing hallucinations. My mother was beside herself because "something was hanging on her back door" and she was frightened. As soon as we stopped the medication and it metabolized out of her system, all the bizarre side effects from that medication stopped. Talk to her doctor because there are several medications that treat anxiety and sleep disorders in one pill. My mother takes Seroquel, which is typically not a sleeping pill, but it has worked beautifully. It actually treats depression and other psychiatric issues.

Sunnigirl1--In response to your question "I am curious as to how you have the insight to realize that it was an hallucination." Lewy Body and FTD are interesting in what they take from you, what they leave behind, and the little gifts they give.

Mostly I use logic. I have always believed that if I understand something I can deal with it; hence, I have studied the research, etc., plus applied all I learned over 35 years working with developmental disabilities. Logically, if you experience something that at the same time no one else does, it's you, not the environment. I know Blue Boy is a painting, in whatever art museum wherever in the world, so it can't be in my neighbor's back yard--got to be me. I key a lot off my wife and dog, as well as other people who are around. If they don't react, I know it's me, and if it's me I can either figure out what reality is, or enjoy the moment (hence, the entertainment). No one reacted when I saw the British soldier standing behind my doctor, (both his nurse and my wife were in the room) so I knew it was me.

I am determined not to let Lewy or FT, or the combination thereof, overwhelm me. have no doubt that as my disease progresses the time may well come when I cannot tell the difference or figure it out; until then,

There is a lot of life after diagnosis. Enjoy it. And NEVER GIVE UP.

My mom (91) has had such episodes in the last year and she has dementia. I've narrowed down what I think has caused her hallucinations: pain killers when she was having back issues in terms over being over medicated - even too much over the counter pain relievers seemed to cause it. Once she was off them she was herself again. Another reason I think It happens is because she is sleep deprived due to anxiety she brings on herself for reasons unknown - once she relaxes and gets caught up on her sleeping she's fine again. Only once was it a UTI and it was a slight infection. For the most part I found that if she takes strong meds on top of her regular meds she's not herself. Her doctor prescribed an anxiety medication, low doseage that is to be taken only in case of such episodes which simply calms her to the point that causes drowsiness and then she sleeps. Now I'm able to see an episode starting and when that happens I soothe her by praying for her, breathing exercises and sometimes giving her a warm shower. I have found that pain or fear will sometimes cause her to get agitated which is my cue to soothe her before a full blown anxiety attack happens. She always gets agitated when she has a doc visit, fearing the worst even if it's just a routine visit. Sometimes I can get her to recognize that she's working herself up and she will calm herself. I now know her body can't handle lots of meds other than what she normally takes and I always make sure I know what the side effects are when she has to take something new. Hope this helps.

My mother would hallucinate things like spiders on the wall, hear knocking on the door, etc. - it was mainly when she was on the med sertraline. I'd check the side effects on her meds & ask her dr. if her meds could be causing it.

My mother is 91 and sees people who are not there, usually small boys and people rehearsing for a show! The dementia nurse said not to worry unless she gets scared or distressed. At present she finds it quite interesting and we often discuss the little boys, where they live etc. I never try to tell her they dont exist

A couple things could be causing this. First of hallucinations are very common in dementia patients, also does your mom have macular degeneration by any chance? People with macular deg also experience these. My mom has had Macular for over 20 years and has had many episodes. More recently she developed dementia she is 92. With the dementia has come many episodes one recently where she was sure the doctor who just visited the home she lives in was dead out in the yard. She was upset for several hours about it. I have noticed an increase in her anxiety lately so the doc is starting her on an anti anxiety med to see if it will help. Sometimes there are no clear answers or solutions to the problems our loved ones face and that is the frustrating part of this journey.My best to you and mom.

This is not uncommon with dementia, or reaction to certain meds. If the hallucinations are not harmful, don't correct her, just change the topic. If they are unmanageable or very often speak to the dr. If not, i would just deal with it as adding more meds to the mix isn't always the best route

Mrranch2--Thanks for your candid and detailed descriptions! It's very helpful to learn from someone who has the condition but is otherwise rational and able to see around the disease. My father starting having hallucinations a couple months before his death at age 90 and I usually went along with them except for one--although he was bedridden, he was convinced he was standing and wanted to be put back in bed. I answered that I was perpendicular to him and my feet were flat on the floor. Because he was a man who had always been very logical, this explanation made sense to him.