Dear Irene,
I feel for what you have gone through. We know they can't help their delusions but it is such a hard thing for a caregiver( spouse, daughter, son) to endure, not to mention totally exhausting for all. Thank you for telling of your experiences.

Dear Mary Angela,

Your husband's capgras is almost identical to my mother's with my dad.
The last week she wants NOTHING to do with him, doesn't want him around. I tell her what you told your husband, that he loves her so much and will do anything to help her,also that her mind is playing tricks on her. She thinks we are being deceived into believing that and one day we will find out the truth.

I am bewildered tonight by today's events and thinking more of the same tomorrow. Then I feel ashamed and guilty for even thinking that.

Hello to all,

I read your thoughts and experiences and I see so many similarities in what I am going through with my mom. She has been diagnosed with LBD for just over 6 months (maybe 7). She has hallucinations a lot. Her reality is distorted. She is very paranoid and suspisous of everything. She has good days and bad days...Meaning that she has these spells. They usually start with her seeing these "bugs" (and other things, but they vary, unlike the bugs). Then whoever is taking care of her at that time usually goes without sleep for a night or two while she has all these hallucinations. Then about the 2nd or 3rd night the bugs start to attack her, making things very unsafe for her. She forgets and disregards all safety measures and sometimes we wonder if she is going to fall out of her chair fighting with these bugs. She is a fall risk anyway. Has anyone experienced something like this? I mean, she hasn't had a spell in about 3 weeks, but we are certain it's right around the corner. The hallucinations are always present, just about. If my dad and I are talking, she hears everything wrong...Even if we are talking to her, she mishears almost everything. I don't know how to respond to her...I try not to get hateful, but it really drives me crazy, having to repeat myself all the time, sometimes more than once. I am so sorry I don't have any encouragement or advice to give...But please know that you are not alone. This group has already let me know that there are so many others going through the same things as me.
If anyone out there needs a friend to talk to, please don't hesitate.
Thanks for listening,
-Chrsity

Chrsty
My mom started seeing bugs about 5 or 6 years ago ....long before any dx was ever made.The family always thought something must be wrong but that was her only symptom back then.Most of the time she was fine and had no other problems excecpt for her complaints of bugs biting her all the time.She sprayed so much spray we thought she was going to poision both herself and dad!
It wasn't until mom started seeing children in her livingroom and hearing gospel singing ever night, that we started to get worried.She was dx about a year and a half ago....but we now know she's had LBD for a lot longer than we knew.Looking back, all of the odd things she would say or do then...now makes sense.
Mom still does o.k. at times.....making some relatives or friends question us as to why we think something is wrong.But, more than not she's got a wild tale that she believes, a "friend" talking to her through her invisible headset or a fear of something terrible about to happen.She is very confused at times and she too can't hear anything.She has hearing aids...but refuses to wear them!
For now, it's one day at a time.Good luck with your mom....I know it's a stuggle.

Kay,

Thanks for listening and thanks for the reply. I will pray for your entire family. Hang in there as will I!

Marji,

My husband has two sleep disorders in addition to LBD -- REM Behavior Disorder (REM-BD) and sleep apnea. The REM-BD causes the thrashing, kicking, talking and sometimes yelling or cursing in his sleep. [He takes Mirapex 3x a day for this.] Most of his dreams are scary for him and sometimes he gets angry, yells at "dream people," and tries to hit or kick when he feels threatened. Every once in awhile his dreams amuse him and I'll hear him giggling or laughing out loud.

Because of the intensity of the hitting and kicking, however, his neurologist told me I shouldn't sleep in the same bed with him anymore because it wasn't safe for me. Also, our bed is quite high and sometimes my husband would thrash around so much he'd fall out of our bed which is quite high off the floor.

Eventually, we shifted our sleeping arrangements to the family room sleep where we have two couches. I can still keep watch over my husband but I'm out of reach. Even though I sleep in the same room, I still have a motion sensor positioned strategically so if he wakes up and starts to wander around, the siren will wake me up. I found that I couldn't rely on the sound of his movements to wake me up.

If YOU need to sleep in a different room, a baby monitor and motion sensor could help considerably.

Cathy Thomas