Persistent Hallucination?

GothicGremlin

I'm not even sure what to call it. Peggy has a frequent, recurring hallucination of The Lady. When Peggy refers to The Lady you can hear the capital letters just in the way Peggy brings her up. This hallucination is really upsetting for Peggy. The Lady is always going to do something "bad."

Obviously there's no one there. The main trigger seems to be lunch time or dinner time. It's not exclusive to those times, but I'd say The Lady appears at meal times about 75% of the time. 25% of the time during some other activity.

Has anyone else experienced this with your LO? Hallucinations and delusions seem to be somewhat common in dementia, but I haven't heard anyone mention a hallucination that stays the same over an extended period of time. I'm baffled.

Jeanne C.

If you haven't yet, I'd mention it to her doctor. This must be so upsetting for you both.

This may be a dumb question, but is it possible that there is an actual person? When we were struggling with getting meds straight, my husband would mention the lady with the medicine. It was me, but he wasn't recognizing me as that person. It could be someone who Peggy sees at meal times who she reacts to?

BassetHoundAnn

Since The Lady is appearing at meal times do you think Peggy might be equating another resident or aid who is helping to serve meals with someone ominous from her past? Or a TV show? Or her imagination?

My mom recounts the craziest encounters with mystery people, and also supposed encounters with long-deceased siblings. I don't think they're hallucinations, but rather her mind trying to make sense of her surroundings and the "mystery people" around her by combining them with elements from her past.

She keeps insisting that her older brother and sister, both long deceased, are in the nurse's office or are residents in the memory care. She often insists the MC is her brother's house. It looks nothing like her brother's house, which was a hoarded shack. But I suspect she's remembering visiting her brother at the MC where he lived in the last years of his life. She assumes she's there with him and it's his house.

She insists that her second husband, long deceased, occasionally meets her for dinner. Sometimes she accuses him of avoiding her.

Several times she told me there was another resident who was knitting a sweater for her. I thought well that's crazy. Who in MC can knit? Then I met a volunteer from hospice who was visiting her every week, and she said she always brought her knitting with her. Mystery solved.

The other night my mom insisted there was some sinister person who was trying to get her tossed out and sent to a nursing home. Oh-oh. No idea what the source of that delusion might be.

The other day she insisted that someone took her shopping at a shopping mall in Minnesota that sounded like Mall of America. My mom has never been to Minnesota or Mall of America. Had she seen something on Spectrum News which the aids often have playing on the TV in her room?

I don't think these are hallucinations, although maybe they are. Rather it's her fractured mind trying to piece together baffling things like pieces in a jigsaw puzzle.

GothicGremlin

I don't think it's any of those things.... She eats by herself now - this has been the situation since around last January because she gets so agitated if there are too many people around. Sometimes M and I sit with Peggy in her room for lunch. Even there, The Lady shows up from time to time. Not a soul has come by, it's only the three of us. I've also been on the phone with her on the days I don't go in, and oftentimes The Lady makes an appearance. Someone from memory care will then tell me that there's no one in the room with her. She's seeing something, but I can't find anything that would trigger her in that way.

I have a caregiver who spends dinner time with Peggy if I'm not there, and she tells me that Peggy will bring up The Lady to her periodically. And again, they're in Peggy's room with no one else around.

Then there are the straight up hallucinations/delusions - easily explainable. Like when she's certain I'm there in person because she can see me in her room. But I'm not there, she's seeing the big portrait hanging on the wall of me, her, and my brother that my parents had done when we were in our late teens/early 20s. M says that she'll talk to the portrait as if me and my brother were actually in the room. Discomfiting, but easily explainable.

But The Lady. I have no idea what that is.

BassetHoundAnn

Wow. How very spooky. Those do sound like hallucinations. Do mention it to her doctor if you haven't already.

GothicGremlin

Yeah, @BassetHoundAnn it really is kind of spooky - and baffling. I've talked to Peggy's doctor about hallucinations before, but not yet about The Lady. I wanted to check here first to see if anyone has any experience with this.

I have a meeting with her doctor Tuesday about medications, so I thought I'd bring this up as well.

It's good timing because yesterday was just a day from hell for Peggy (and me too). The Lady was present, and I spent over an hour trying to calm Peggy down, but she was inconsolable. So much yelling, screaming, and crying. I felt horrible for her. Drugs helped her in the end, but man, it was terrible seeing her in such distress, and being mostly helpless to make things better. By the evening she was okay again, had dinner with my caregiver, with no mention of The Lady.

ButterflyWings

GG - we have not experienced this. DH gets increasingly confused when multiple caregivers or others have been in the house or calling via video which a couple of family members have begun doing at this late stage.

The different faces and voices totally throws him off now. It often makes him start asking for his wife when I am right there, which makes me sad of course. He gets a bit agitated and less cooperative at these times, but has not been distraught. And thankfully it hasn't resulted in a fixation on any one personality, or idea.

My heart goes out to Peggy and you. What a frustrating and apparently frightening thing for her to deal with! You don't think her reflection in the mirror is triggering something that escalates, perhaps ? Poor thing. I sure hope the Dr. can help in some way. Sorry you both are suffering with this.

harshedbuzz

@GothicGremlin

I am so sorry you and dear Peggy are living this nightmare. We were fortunate that dad's hallucinations were fairly benign. The visual ones were mostly pleasant and the auditory ones were mostly hearing children who weren't behaving-- so long as you didn't sit on the dead golf buddy or told the kids to go to sleep it wasn't anything that required management.

A man in out IRL support group was not so fortunate. His dear wife was a young, orphaned tween when the Nazis raided her home and took her beloved stepmom away. She survived on her own with help from neighbors and eventually came to the U.S. where she met and married her husband. As her dementia advanced, she time traveled back to that time in her life and was inconsolable. She often hallucinated "the men". This couple had a large, blended family with adult grandchildren, so she was literally never without a family member and yet the only thing that dialed this back was medication which really pained her husband.

The persistence of this hallucination makes me wonder if there isn't some factual basis to this. Perhaps there is some abuse in her background-- a mean babysitter or teacher or even a dear friend who was a victim and shared with Peggy who has taken the experience on as her own. My friend's mom grew up in Germany where her close cousin was raped by a priest as a young girl. It devolved into a he said/she said situation at the time and the girl was vilified. As mom entered the later stages of dementia, she assumed this story as having happened to her. In a similar vein, not long before dad went to MC, he insisted he'd had his knee replaced when it was mom who did.

HB

Quilting brings calm

Could she be seeing shadows or reflections in the lighting in the dining hall or her room?

mommyandme (m&m)

Maybe a very mean lunch lady from elementary school? Some of my lunch ladies weren’t very nice. Has anyone pretended to remove “the lady”? I imagine the ruse might not go well if after the act of removing her, she was still there.

I hope your meeting with the doc went well. Sorry for this pained situation.

GothicGremlin

Thanks everyone, I really appreciate all of the suggestions.

It's definitely strange, but like @harshedbuzz and @Jeanne C. suggested, I started wondering if a real person might be at the root of it. I've eliminated other possibilities - no shadows, no mirrors, no mean people in memory care, nothing like that.

I talked to her childhood friend D (part of Team Peggy) ... she hears about The Lady when she talks to Peggy on the phone. She remembered one incident from kindergarten that was memorable. I'm not sure that it was traumatizing, but maybe it was. They had a really mean kindergarten teacher and there was at least one incident where the teacher came down (probably too hard) on Peggy for something that she was doing. I could see Peggy holding onto this memory. It was still vivid for D. So maybe that?

The only other thing I could come up with was we had mean great-aunt when we were growing up. She was almost the stereotype of the short, heavy, very loud Italian matriarch who you don't dare cross. She was just generally mean and we did our best to just stay out of her way. So she existed, but I don't recall her ever doing anything to us.

I talked to M, who had regular contact with her from college to present day, and he couldn't put his finger on anything. Peggy had a bad ex-husband, but neither M nor I could come up with an incident besides him burning her high school yearbooks. That was a pretty nasty thing to do, but I'm not sure it's traumatizing.

So I don't know.

If The Lady is a manifestation of one of those three people, what would I do as a next step? I talked to my therapist about it, and she mentioned a trauma specialist, but would that even work in this case? I'm not sure Peggy could even participate in a conversation like that.

SusanB-dil

Hmmm... perhaps you could be the 'therapist', and see if you can find out what The Lady is up to at some point? She indicates The Lady is 'going to do something bad', so maybe try to narrow down what that is. I know, it may not work at all, but just a thought and you never know.

GothicGremlin

It's a good thought @SusanB-dil . I've sort of asked that question, but I haven't ever done it in the moment. I'll give it a try.

JJAz

https://alzconnected.org/discussion/66635/persistent-hallucination

Hallucinations are a common indicator of a specific type of dementia, Lewy Body Dementia. Also note that up to 50% of Lewy Body Dementia patients have been determined to also have Alzheimer’s or another type of dementia. Additional information about diagnosing Lewy Body Dementia from Alzheimer’s Disease is available at lbda.org

 Movement symptoms of Lewy body dementia

One of the core features of LBD is parkinsonism, which is an umbrella term that refers to brain conditions that cause movement issues.  Some people with LBD may not experience significant movement issues for several years, while others may experience them early on. At first, movement symptoms may be very subtle and easy to miss.

• Slowed movements (bradykinesia).
• Rigidity or stiffness.
• Tremors.
• Balance problems.
• Shuffling walk.
• Difficulty swallowing (dysphagia).
• Reduced facial expressions.
• Frequent falls.
• Loss of coordination.
• Smaller handwriting than what’s normal for the person.

 

Cognitive symptoms of Lewy body dementia

Fluctuating cognitive (mental) function is a relatively specific feature of Lewy body dementia. A person with LBD may experience periods of being alert and coherent in between periods of being confused and unresponsive to questions. This can change from day to day or within the same day. Other cognitive symptoms include a decline in:

• Planning abilities.
• Problem-solving skills.
• Decision-making
• Memory (Unlike in Alzheimer's dementia, memory problems may not be present at first but often arise as LBD progresses).
• Ability to focus.
• Understanding information in visual form.

 

Hallucinations & Visuospacial

Visual hallucinations, or seeing things that aren’t there occur in up to 80% of people with LBD and often (but not always) early on in the condition. Other types of hallucinations, such as hearing or smelling things that aren’t there, are less common than visual ones but may also occur. Other visuospacial difficulties are also common:

·      Decreased depth perception

·      Trouble recognizing familiar objects

·      Impaired hand-eye coordination

 

Sleeping problems in Lewy body dementia

Sleep disorders are common in people with LBD, especially rapid eye movement (REM) sleep behavior disorder (RBD). This condition involves frequent movements, such as flailing or punching, with yelling or speaking while sleeping. People living with RBD often have difficulty separating dreams from reality when they wake up. Other sleep issues associated with LBD include:

• Excessive daytime drowsiness.
• Changes in sleep patterns.
• Insomnia.

 

Dysautonomia in Lewy body dementia

Dysautonomia is a general term for a group of disorders that share a common problem — that is, an autonomic nervous system (ANS) that doesn’t function as it should.

The ANS is the part of your nervous system that controls involuntary body functions (functions you don’t consciously control) like your heart rate, blood pressure, breathing, digestion and many more.

People with LBD can experience issues with their autonomic nervous system, which may result in the following symptoms:

• Changes in body temperature.
• Blood pressure drops that appear to be falls.
• Dizziness.
• Fainting.
• Sensitivity to heat and cold.
• Sexual dysfunction.
• Urinary incontinence.
• Fecal (bowel) incontinence.
• Constipation.

 

Mood and behavioral symptoms of Lewy body dementia

People with LBD may experience behavior and mood changes, which may worsen as their thinking abilities decline. Symptoms may include:

• Depression.
• Anxiety.
• Agitation, restlessness or aggression.
• Delusions (strongly held false beliefs or opinions that have no basis in reality).
• Paranoia (an extreme, irrational distrust of others).

 

 

GothicGremlin

@JJAz -- thank you for this! I hadn't considered this. Peggy had been diagnosed with FTD and Alzheimer's, but this can always be subject to change. I'm going to ask her doctor.

Thank you again.