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Topic Auditory hallucinations Go to previous topic Go to next topic Go to higher level

By lynn On 2009.07.21 20:57
My husband told me today that he hears someone telling him to wake up and that he hears someone ringing the door bell at 5:00 am. I don't know if these are true auditory hallucinations since it is when he is sleeping. I feel he is having dreams and can't tell the difference. Has anyone experienced this?

By Tara On 2009.07.21 23:28
Oh, you bet!

My dad would always ask if someone was knocking at the door, if someone had asked to speak to him, etc. Too many times to count. Most of the time, he would be lying down, and at first I chalked it up to "dreaming". But after it happening so many times, I had to concede that something other than dreaming was taking place.

Maybe this is not what you want to hear, but he now has severe dementia. I wish I had better news. I'm just glad he still remembers who I am.

By lostdaughter On 2009.07.22 01:13

My mom also experiences what you describe. When she first started experiencing hallucinations she described them as dreams. In a little more than year she has gone from what could be written off as dreams to actually participating in the hallucination. It happens mostly at night and that's what frightens me. Sometimes she stays in bed but will have her eyes open and respond if asked a question but have no recollection later. Other times she will ask if someone came into her bedroom, if we had company, say a strange car was in the drive, etc. when those things didn't happen. She accuses others in the household of doing things we didn't do. She has also had some hallucinations during the day and that seems to be happening more frequently. The worst times she will get out of bed and try to do things. One night she was insistent she had a baby that had to be taken care of. One night she wanted to cook breakfast at 2:30 AM (something she can't do at any hour). One night she let her cat, who stays inside all the time, out the front door and was outside trying to get her back in. That night she claimed that people tell her to do these things and she can't stop herself.

I know all this sounds scary and it is. It terrifies me to think what she might try next. So far, all the meds prescribed to help have only made it worse.

I agree with Tara that this probably isn't what you want to hear. I had no clue about PD dementia and hallucinations until I found this board. I knew something wasn't right but no doctor had ever mentioned the possibility and we'd been through the wringer trying to figure out what was happening with her. I wish I'd known about the possibility. I was broadsided at a time when I was exhausted and mentally spent.

I think you're wise to take notice. I now document some of the incidents (time of day, what she said and did and what she recalls). You might want to consider taking some notes and talk to your husband's doctor if this continues. I've found that trying to recall details is difficult when we start discussing falls, medication, etc.

Best of luck to you. We're here if you need to talk.

By WitsEnd On 2009.07.22 10:48
My experiences with dad was similar. It sounds like the beginning of PD dementia. Dad had active hallucinations where he thought the tiles in the floor were moving, a man was stuck in a sliding glass door (his reflection in mirrored closet doors), etc. There were times I think he was also reliving his world war II days too. He was difficult to communicate with at those times because what he would say wouldn't make sense.

Good luck and hang in there.

By bandido1 On 2009.07.22 13:14
Patient Bob here---guess what? I experience both vivid dreams and auditory hallucinations. Just the other day I thought someone was greeting me at wake up time, but my spouse denied it. My hallucinations are not as extreme as those described, but are very vivid and sometimes bizarre. My own sense, if I have any tells me it's medications. So far, my neuro rules out dementia. Bob C

By lynn On 2009.07.22 14:34
thank you all for your input. My husband hasn't yet been told he has dementia. It is on my mind when these things happen. I guess you just can't help but worry about it.

By WitsEnd On 2009.07.22 16:02
Patient Bob -

Tara mentioned the meds making it worse. You also mentioned meds. Any suggestions on which meds help/hurt this? Maybe a discussion with the doc might be in order. I know adjusting my dad's meds made a huge improvement several times throughout the course of his treatment--wouldn't help to ask, right?

By LOHENGR1N On 2009.07.22 17:25
Yes discuss the medications with the Doctor. If You look the medicine up online you can find side effects for them. You'll be surprised at the number that list hallucinations. Carbidopa/Levodopa (Sinemet) is one, a little know fact to the public and Us Patients and caregivers/partners. Ergot (a fungus on rye) is used in making it. Ergot has been theorized as the cause of the Salem Witch trials and the French Revolution, it also is used in manufacture of LSD. These ARE mind altering Drugs We use to fight Parkinson's Disease!

Many know I cringe when posts on or about dementia show up. So before I start ranting and raving on this I'm going to try to clarify why I feel the way I do. I live alone, others like Peter also are out here alone basically. To Caregivers/Partners, trying to get a grasp as to what's happening, the two D's aren't much different. Dementia and Delusions. Both are subjective calls, delusions come on quick and can be dealt with by adjusting medication or introducing medication. Dementia comes on slow and cannot be corrected or "cured". Now to Myself and those alone out here, if a Doctor calls Dementia we're done! Off to an institution or to someone Who is family but doesn't want Us and feels forced into caring for Us now. Either one ain't good! Once it's on the medical record Dementia won't come off. Live alone? They're Demented, handle daily living? Demented they can't. So I hope You can see why it is a sensitive subject to Me.

Changes, always question the Medicine, dosage, effects (not only upon introduction but also cumulative) and make sure the Doctor considers everything including rate of onset of problems etc. before writing dementia. I made both my Neuro and primary care Doctor promise me they would scrutinize any diagnosis of dementia (if I was in accident or needed operation and ended up in nursing home for rehab and med's schedule got goofed up. And some doctor in there wrote dementia down) and strike it from medical record if delusions or any doubt was present. Take care, best of luck and hang in there.

By Tara On 2009.07.22 19:21
For Dad, it was Mirapex (pramipexole).

Now, it did not cause the dementia; it only worsened it, because he had dementia before and after it. But while on it, he was a total psycho.

By lostdaughter On 2009.07.23 01:10
We've discussed the possibility of dementia and the hallucinations with mom's neuro on several occasions. He basically blew us off and said it was the progression of the disease. Last week her PC doc instructed me to contact the neuro AGAIN (it's about a weekly event) and ask for suggestions on ways to deal with her getting out of bed during the night and doing less than normal things. Just a couple of nights ago she called the med alert company twice, telling them there was a man in the house and asking them to call 911. I spoke with the neuro today and was speechless when he asked how long the hallucinations had been going on. I reminded him that we'd brought them up on several occasions but he acted like he didn't hear me.

No one will ever convince me that the majority of these doctors have a clue how difficult it gets on everyone involved if the patient has dreams and hallucinations like mom does. As I've said in previous posts, it's doubly hard because mom is very paranoid and does whatever it takes to try to cover up just how bad off she is. So far it appears she's doing a good job with her cover.

By WitsEnd On 2009.07.23 10:25

Your situation reminds me so much of dad that I have tears in my eyes as I type. My heart goes out to you. Your mom is sundowning. That's how dad's dementia first started. My first clue about dad was the call I got about a man being stuck in the sliding glass door and that someone was breaking in his truck. The things he said were totally crazy. I called 911 and told them that he was halucinating and had an altered mental state and it took me 45 long minutes in traffic to drive where he was. The paramedics made it there first, but he refused to go to the hospital and said nothing was wrong. I insisted and the finally diagnosis was PD dementia.

As things got worse, the sundowning started earlier in the day. The number of days it occurred got more frequent. He wandered at night and had to be put on sleeping pills to keep him in bed.

I would recommend talking to the neuro to get the meds adjusted to see if that helps. She can't be left alone now and she is going to need sleeping pills at night.

And I agree with you.....I hate it when the doctors say well the thing that is wrong the most with him is that he is "just old" and don't take complaints about hallucinations and others problems seriously. The only thing you can do is change doctors or keep squawking until they try adjusting the medicines to see if that can help.

Hang in there.

By bandido1 On 2009.07.23 13:09
Hi evryone: after reading AL'S comments on dementia, I thought I better charge up my speech recognition software and dictate an answer. I'm also going to shift gears and veer away from the tough love approach.

Actually, as I recall, the neurological examination given to me over two years ago cited milder dimentia. At age 75, that was not especially surprising. However, one must recognize that the DX was based on a series of questions asked and answered---no blood tests, cat scans etc. I would guess most of you longtime contributors to this forum would agree I do not exhibit signs of severe dimentia, if at all. The hallucinations I experience are, no doubt, related to my meds. Fortunately for me and my family, they do not involve issues of safety, bizarre behavior, or what I would call sexual misconduct.

I do not recall mentioning this in this forum, but I have a theory that there is a correlation between hallucinations and brain activity in general. To put it as a delicately as I can, the less you use your brain for other mental activities, the more likely you are to hallucinate with the drugs. I expect this comment will trigger a flood of responses. Please don't pick on me!

Al and Peter will, I hope, have a few things to say about my theory. Bob C

By lostdaughter On 2009.07.23 13:43
Your theory makes sense to me. My mom uses her brain very little. She has no interest in doing much of anything and has no hobbies or friends. She sits in a chair thinking of things that need to be done that she isn't capable of doing. Other than that, she watches television. That's it.

I rarely miss reading one of your posts and am surprised that you've been diagnosed with any dementia at all.

I appreciate you sharing your theory. I don't know of anything that can be done about my mom's situation but there is a lesson for all of us in your theory to use it or lose it!!

Thanks for sharing!!!

By lynn On 2009.07.23 14:31
Bandito- Your comment makes perfect sense. I try to keep my hubby as active and engaged as I can. today, I checked out an adult service program offered by the jewish community center that seems great. They offer all kinds of programs thru-out the day and the client can pick and choose. There's a full time nurse to administer meds. My hubby wants to stay active and I know he will give this a shot. He just needs some extra support these days with the PD stuff. I'll let ya'll know how it goes.

By WitsEnd On 2009.07.23 17:43
That Nintendo Brain Age game is supposed to keep you thinking. I got one and it really seemed to help. Apparently that use it or lose it theory is a good one (or at least good for marketing games).....

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