Illusion, hallucination or delusion?
Every night lately, my DH asks me questions like, "where is everyone else", or "where is the little girl", or "where is the dog"? I understand the dog question, because our dog died after us having him for 10 1/2 years, but the other questions confuse me. There are just the two of us living in this house. Sometimes he asks where we are going to sleep tonight, although this is our home and we have a bedroom. I want to know how to explain this to his neurologist. What would you call these kind of questions?
Comments
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An illusion is mistaking one thing for another, such as thinking the sound of dogs barking down the block is children playing in your house. A hallucination is seeing, hearing, or having another sensory experience when nothing is there, such as seeing the children playing in the house when there is no one there. A delusion is an idea, such as believing that "they" are looking for you, or that you are the king. A belief that you're not home, that the place you are is not the place you belong, would be a delusion.
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What you are describing is exactly the type of concerns my DW expressed daily earlier in her dementia journey (she is now in Stage 7e and on hospice.). When we got back from an outing she would search the house wondering where “everyone” was. When we would take our lone dog for a walk she would fret about where the “other” dog was. Where were her (long dead) parents? Occasionally when returning to our home she would refuse to go in, convinced it was not our house. And so on.
I consider these delusions, probably based on memories of earlier times like when our house or her childhood house was full of people. I wouldn’t worry to much about a label for this, but I definitely advise just making a written description of these behaviors to give to his neurologist just prior to any visit. Hopefully then your neurologist will know what the issues are and be sensitive enough not to have to extensively discuss this in front of your DH.
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My DH has asked questions like these for a couple of years. He asks the same question of “where did everyone go” daily and asks about dogs and other people, like where did the guy go that was just here. I guess I’m use to these type of questions and just reply something like they already left, or I didn’t talk with them but sure they will be back later. As far as asking about the bedroom, he also asked that for quite some time and now forgets where the bathroom is during the day and I have to show him where it is. Not sure if there is a name for this, but sure others may chime in.
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My husband with Alzheimer's does this exact same thing! Always asking where are the people, when are they coming, where is that woman, etc. Sometimes he sits on the front porch just waiting for them to come. He also asks many evenings where do we sleep. I usually just say I don't know where the people are or no one let me know, but we can let them in when they arrive. Luckily he doesn't get too distraught or worried so I usually just move on or distract.
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My wife's delusions/hallucinations are real to her and sometimes terrifying. It tears at me to see her so confused and scared. I'm hoping to get some relief from our doctor next week….hang in there mathreader
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This was my sister (Peggy) starting about a third of the way through stage 6 to the beginnings of stage 7. In her case it was The Lady, who was always trying to hurt one of us. I never did figure out who The Lady was. And the way my sister referred to her, you could hear the capital letters in The Lady. Needless to say, there was no one there.
Occasionally Peggy would forget where her room in memory care was, or even that she had a room. One time she told me she was going to have to sleep on the couch because she didn't have a room.
Then there were the times when she'd see birds fluttering around in the trees outside her bedroom window (in memory care), and swear that they were cats. We'd just remark that the "cats" were cute. Usually I'd just roll with whatever was happening.
When The Lady hallucination got to be too much, we'd increase Peggy's medications.
I'd consider what your DH is going through more as delusions, than hallucinations (unless he's seeing the dog or the little girl.)
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Thanks, everyone. I didn't know that this was a common event in Alzheimers, so your responses make me feel not so alone. It's hard to describe this life as a caretaker to others who haven't or aren't going through it. I am having to learn so much. Like to give instructions or explanations in short, one step sentences. I find my self not wanting to start conversations because it's so much work to explain the simplest things. It's a lonely life, isn't it? I'm off topic here, but venting because it has already been a difficult morning. Thanks to all of you for your responses and what you do.
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it is a lonely life. Like you, I often don’t start conversations. I always think before I say something, I miss having a partner to talk to about anything. We do still laugh though, so I’m very lucky there. I dread the day he stops laughing.
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The fact that nothing he says may make sense is something that takes getting used to. But like trotting along, I am fortunate that my partner even in late stage 6 now still has a sense of humor. We are able to laugh frequently, which helps a lot. Many times it's at nothing, or at something silly like me helping her put her pants back on. You hold on to anything you can.
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Before my DH’s doctor’s appointment, I wrote down things I wanted the Dr to be aware of and then handed the folded paper to the nurse while my DH was on the scale. She gave it to the doctor prior to him coming in the exam room, so we didn’t need to discuss anything in front of my husband.
I wrote:Daily hallucinations: sees people and animals that aren’t there.
Daily delusions: makes up stories in great detail that aren’t true.
Occasionally wakes up at night very agitated and takes the bedding off the bed and remakes it over and over. He says he’s too hot, no too cold.
Mood swings with many angry episodes, calls me names and orders me to get out.
His doctor prescribed Seroquel at that visit. Although the hallucinations and delusions are still happening, there is no agitation or anxiety during the episodes.
Example: The other night he asked me very calmly if he was in trouble. I asked if he meant in trouble with me? He said … no, just in trouble. I said … no you’re not in any trouble. He said … I wondered because that man has been standing there looking at me for about 15 minutes. I said, “Oh, no you’re fine; not in trouble.” And that was that … no fear, or anxiety … just a conversation. It was very different before he took Seroquel.1 -
It's terrifying when they have hallucinations. So sorry. Please read the book "The 36 Hour Day" available on Amazon. It really helped me with my husband's behaviors after his diagnosis. It was recommended by a nurse. When I communicated with my husband's doctors, I would send them a monthly email and list all the behaviors my husband was exhibiting. I used the list of behaviors in the document "The 7 Stages of Alzheimer's" If it was something like agitation I would send them a more urgent message. It really helped me communicate with them and I also used the document to see how he was progressing and what to expect in the next "stage"
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@mathreader and @trottingalong I hear you about not starting conversations. Nothing about dementia lends itself to a brief response. Even now that Peggy has passed away and people ask something about her, I just answer briefly and move on.
And you know what @trottingalong , your DH may still have a lot of laughter in him. Peggy and I used to laugh and joke about stuff all the way through stage 6. Not so much after she hit stage 7, but even then I could sometimes get a smile out of her, or even a "you're so funny" in response to some good-natured snark.
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I read that book about a year ago, but maybe he wasn't far enough along for me to feel like it helped. I do own it, and I will try again. I like your suggestions on communicating with the doctor before we get there.
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Yes, enjoy the laughter. I feel like we don't laugh very often anymore. It's sad
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Hello. Simple instructions such as "Can you please take this to the TV room?" results in a blank stare or confusion. My DH has Capgras Syndrome (thinks his wife has gone away and I am a care giver sent to take care of him) He follows me around the house, never gives me a moment to myself. If I sit for a moment to read, he is right beside me, usually asking something that I can't understand. If I sit to watch a TV program, he stands in front of the TV until I finally give up. He can no longer dial the phone, turn on the TV or make a cup of tea. Within an hour of him being with someone else he becomes very agitated, worried I'm not coming back. I understand what you are going through.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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