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 My delusions 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post My delusions
Recent posts about persistent and ongoing delusions made me remember my own experience with delusions. This isn't directly related to LBD, but if you are interested in an inside view of delusions, here goes mine ...

For the 3 days I was in ICU I had frequently recurring images of an assembly line conveyor belt, somehow connected to agricultural products. (I remember chickens in particular.) These images were somehow ominous and were distressing to me. They had a strong visual presence for me, but I am not sure if I was hallucinating. (I'm sure there weren't chicken in the hospital room. I just don't know if this was a recurring dream or I was awake and seeing things.) I don't think I told anyone about them, and that I knew they weren't really there. In retrospect a conveyor belt was an appropriate metaphor for what I was feeling -- dehumanized in an impersonal environment. Every few minutes a machine automatically took my blood pressure and recorded it in a machine. People would walk into the room and first consult a computer screen. Sometimes that is all they did -- they never had contact with me. I begged a nurse if she would take my bp by hand. Nope. Didn't even have the equipment to do that.

Then I was reassigned to a regular room. I felt wonderful. I was sure a new adventure was about to begin. In fact, I was sure I was in a video game of some kind -- not playing it, but in it. I was eager to see what would happen. I got settled into the room and awaited what came next. Not much. It probably wasn't going to happen till after dark. I looked in the little supply cabinet in the bathroom for game pieces. I tried to figure out what my role was and was eager to have instruction. The nurse call button the the side of the bed certainly looked like a game piece so I pressed it. I said I was ready! Ready for what? Whatever comes next. Is someone going to play with me or give me the rules? The nurse informed me that it was 3 am and I should try to get some sleep. Hmmm. Maybe not every one on this floor is in on the game. I wondered how I would be able to tell who was, and I gave that a lot of thought. Then I saw invoices for patient services (hallucinations? menu cards?) and I thought, my goodness! Are they billing insurance companies for this game time? No wonder it is so hush-hush. I had some ethical qualms about whether this was right, but finally decided that it was the hospital's problem and there were probably of lot of things I didn't understand about the set up. :!: Later that morning (but still on the same shift) I had some vague memory of my night's behavior and I called the nurse again and asked I had been behaving strangely. Yes, she said, but don't worry about it. I had my breakfast and settled into hospital routine, but the game delusion came back and persisted all day. As people came in and out of the room I tried to figure out if they were in on the secret or not. I tried to ask a few questions that wouldn't be too revealing of what I knew but would give me some clues. My son came to visit and instead of being glad to see him (I'd been longing for family contact for 4 days) I was vaguely annoyed that he was intruding on my game time. He sensed a less than enthusiastic welcome and was hurt. Unlike the conveyor belt this delusion was not at all distressing to me. It was exciting and entertaining. I wanted to be left alone to enjoy it. If someone had walked in with some chocolate coins and said "eat one of these game tokens every half hour," I would have been thrilled. Unlike our LOs, this delusion dissipated for me and left me none the worse for wear, with a vivid and puzzling memory, and a little disappointed.

My game delusion was annoying to the night nurse and hurtful to my son, but mostly just entertaining to me.

That was my one and only experience with delusions. I wonder if it is similar to the experience of dementia patients who live in their own worlds at times. Who knows?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Feb 18, 2011 12:29 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: My delusions
How interesting! I think the description fits what Mr B. experienced. One night I heard him and found him sitting in the middle of his bed talking to people, I asked if he needed any help and he answered for me to go on back to bed because he was having a good time talking with these fellows. He was laughing as he did quite often. [Keep in mind that he was completely blind] I felt that he lived his life in three dimensions; One in the real world, one with his friends that only he could see and the third with his family members who have passed on before. All at the same time, he saluted the troops while telling me he needed more salt, which lets you know why I use the tag line that I do, he introduced me to the strange people saying, "This is my wife, she's 85 years old but she's nice". I welcomed the pleasant exchanges with the nice people because it kept him from seeing just "Black" and pleading with me to turn on the lights, but when the terrors ie. fire, bad men, vicious animals, stc. came, I used the seroquel, melatonin, gabapentin, Advil-- Whatever it took to let him sleep. One morning when he woke up refreshed he remarked that he did not understand how I did that. I was puzzled as to what he meant and he said that he falls asleep in the swamp or others strange places and when he wakes up he is at home in bed and wonders how I find him. I said, "Honey, you can't get away from me, I will always find you." Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Fri Feb 18, 2011 1:06 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: My delusions
It does sound authentic, Jeanne. Thanks for posting it.

I am convinced that at this point, Dale is delusional all of the time... but I'm the one with the problem. He rarely seems overly concerned about it -but he does sometimes want me to act on his reality. He is sure we need to be on the plane or in the car immediately. He frequently needs money and asks for his wallet or credit cards. It doesn't seem to occur to him that lying in bed is where he really is. He wants to go home.

As Dorthea wrote, he talks to the ceiling most of the time. He seems entertained by the conversation.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Feb 18, 2011 1:10 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My delusions
That's fascinating, Jeanne! It would certainly be nice to think they are sometimes amused by their delusions. Derek seems always to be intense and agitated with his.

No delusions here, but I had an experience with hallucinations once in the hospital. I had a severe case of double lobar pneumonia with pleuritis. The pain was so intense--far worse than any I've ever experienced before or since--that I couldn't bear to breathe. It took a lot of demerol to get the pain under control and it made me hallucinate. The visual images were animals and they were all deformed. Like you, Jeanne, I knew they weren't real but could not dismiss them, either. I also experienced auditory hyperacuity and the sound of people speaking out in the hall became an unbearable cacophony. Derek is very sensitive to sound with his Lewy and I'm ever watchful that there is as little commotion and noise as possible and it's one reason he has a private room.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Feb 18, 2011 1:23 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My delusions
It is touching, Dorthea, that you always found him!

A woman who comes to my local support group with her husband has a father whose delusions are very long-running and consistent. He remembers them from episode to episode. It is like a private soap opera. They sound benign and entertaining. The only problem comes when he expects his daughter or son-in-law to participate. He is the governor of North Dakota. (If you are going to have delusions of grandeur, that seems pretty modest.) And the adventures he has are interesting, until he insists that they help him pack for the governors' convention and gets quite upset when they don't.

It sounds like what you are saying, Leone. The delusions seem to be a problem for you, not him. Have you tried something like this ... Honey, I'm not going to be able to join you today, but I hope you enjoy your adventures and I look forward to hearing about them later. I packed you these treats in case service is delayed. (Can he feed himself at all? If not, add "I'm sure someone will be by to help you with them." and stop in for that purpose, or have a helper to it.) ... If he insists on a ride or a packed suitcase or something repeat pleasantly but firmly that you aren't going to be able to join him today.

Obviously I have no idea if that would work. I know that I survived being turned down by the nurse and I even wove it into my fantasy.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Feb 18, 2011 1:39 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My delusions
You have fascinating insight into so many of our family members!


Fri Feb 18, 2011 1:59 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: My delusions
Jeanne.... In Dale's case, it isn't helpful to provide an additional story line. He has plenty of those already. I merely get his wallet, some money, old credit cards, and give them to him. He isn't going anywhere... so he eventually tires of them and hands them back to me for safe keeping.

What I meant when I wrote that it was 'my problem' is that I wish he was still 'of sane mind.' I'm grieving the man he once was. I am not having any problem dealing with him. He is not arguing with me. There are no confrontations.

And yes, he can feed himself finger foods. He can no longer use utensils.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Feb 18, 2011 7:33 am
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