My Mom has Lewy Body Disease. She is in a secured unit of a nursing home and is is the moderate to severe range. She is 67. Recently I noticed her eye contact is getting worse. She seems to look down and to the side when talking and then we aren't sure if she is talking to us or hallucinating. This started once in awhile but is every visit now. Sometimes she squeezes her eyes shut and doesn't seem to realize she is doing it while talking. Has anyone else seen something like this? Is this a common symptom?

We know those we care for are not the same as before.If we were to be bothered by all the out rageous things they say and do we would need a psychiatrist.
The language can hit a core at times but what can we do.
I have an aide who comes once in a while.She laughingly said to hubby she would have to go to church every day if she had to listen to his sweet words.She told him those kinds of words come stright from the gutter.She was not serious.She has been around long enough to know the affects of dementia.

Yesterday as I was bathing hubby heaccused me of having a friend.I got caught off guard.He siad go meet your friend.Then I knew where he was going with this.I just continued what I was doing and began singing xmas carols, they were playing on the radio in his room.Of all songs it was I am gettin notin for xmas as I have been nottin but bad.He did begin to laugh as I was singing and dancing.No more mention of my so called friend

What is it w/ our LO's & swearing? Mom was the same too, lol.

And yes there were some words/phases that came out clear.

When Mom would be trying to talk to me & I couldn't understand, rather than have her get all frustrated I would change the direction of the conversation. With something like you'll never believe what/who (file in blank), pause take a breath & then tell her about it.

Many times I would see a "look of relief"(relaxation of body) because she didn't have to try & carry on a conversation with me.

I know this situation is tuff Hannah-I think about you & your Mom daily & wonder how things are going.

Hang in there, you're doing a great job!!

And another thing re speech...
Have you noticed that phrases seem to come out more clearly? Two or three word parts of sentences that are commonly said like, "I don't know (garble, garble, garble)" or "(Garble, garble), some day soon (garble, garble, garble)

And why DO swear words come out so clear? Because they are emotionally charged? My Mom NEVER swore till she got LBD but now she curses like a sailor!

Hannah, I so understand.The only time hubby speaks and you can understand it when he is made at having to take a bath.Then the bad words are very distinct.He will holler then.I tell him good for him as that is good for his voice box to holler.It seems to make him think, what the heck is wrong with this women.
I can understand their flustration at us .I mean they know what they are saying , My hubby says a nice 4 letter word when I am unable to understand him.He says that plain enough.

Mae,
My Mom talks quietly too and also has the lack of facial expression. The thing that makes understanding her speech the hardest though is the garbled words. About 75% on a good day and 95% on a bad day come out as just noises. It seems that they make sense to her though because she gets mad if we don't understand. There is another lady in the unit who has 100% garbled words - no resemblance to real words at all - but she is very expressive and uses alot of intonation. She comes to talk to me and I feel so bad that I can't understand because she too seems to think in her own head that her words make sense. If I say, "I'm sorry I don't understand." she looks at me in amazement and shakes her head like I am a real dummy. Saying, yes, mmm, mmm-hmmm, oh, thats true.... and etc only go so far. The aphasia is, to me anyway, the most frustrating symptom because communication is so vital with someone who is ill.

Hannah, My husband who has Parkinsons with Lbd dementia has that same stare.I will say something to him and he will never move his head or blonk an eye.Like he is out there in space thinking of something else.
One of the symproms of parkinsons is they become very stoic.My husband has very little expression to his face.Really does not make much in the way of eye contact when you speak to him.I will sit with him and talk like we use to do.He shows no response and his facial expression rarely changes.
He will deliberately ignore me as he does not want to be bothered.
Only when he gets bathed does he show any changes.
He accepts me on different terms then he does the aide.I do believe her having cared for him for five years makes her tasks familiar to him.He is not always nice but he listens when she has to be a little assertive.He had her when he did not have dementia so she remains in his compfort zone.
He does not accept me as the one that is to bath him.He accepts me as the one who feeds him and keeps him safe.Most of the time he likes my presence but he does not wish to be bothered.
There are so many areas where he knows what is going on.Especially when it relates to any discompfort in his body.
LBD is so much different then AD.
The most difficult thing is trying to understand what he is trying to say.His voice is so low.If I were to ask him what he said he gets so upset.
We do have problems with his opening his mouth to eat , at first.He thinks his mouth is open but it is not.We usually have to tell him to open wide .That usually works.YOU CAN SEE HE TRIES TO OPEN BUT SEEMS THE MESSAGE IS NOT BEING DIRECTED BY THE BRAIN.If we are able to get a small taste in his mouth and he likes it, he opens.Also noticed when he is almost done eating the same thing happens.He is able to tell me if he wants more or not.If it is a day when he is really mad he will not open his mouth
This is where we have problems giving him his meds.The nurse from the VA came for his monthy visit and said she would see if any of his meds come in liquid form.

Hannah Im sorry its worsening for mom.
I think I would ask the PCP it is sounds like he knows a little more than most.
I never came across this phenomenon looking into LBD thats why I figured it was maybe the same as AD. But then again I dont think anyone pays as close attention to our LO's like we do to see this happening or give it much though.

Just to update...
I talked to Mom's neurologist about this shifting of her gaze and he said that it is a symptom that the Parkinson's aspect of her LBD is worsening. So I wonder if this is specific to LBD and Parkinsons?? Anyway he said it is a common thing as the disease progresses and as with other symptoms will get more frequent and will not go away.

Hi, Hannah.

My mom also suffers with Lewy Body Dementia. The behavior you describe really does increase as the disease progresses.

Right now my mother is in the very late stages, and does do the eye-closing/squeezing thing quite a lot. As Mz.Lisa mentioned, I believe that often she is having some hallucinations and delusions and is trying to shut them out. But she also does this when she is overstimulated, such as if nurses are coming in that day, of if I have somehow irritated her by trying to feed her when she has no desire to do so. She will even ask me if I can't go find something better to do! (My poor mom ) ...I guess she just needs to get rid of me sometimes

Our Home Health RN (who used to be a hospice nurse) told me yesterday that such behavior is very common as the body continues to decline. She also mentioned reduced thirst and appetite, and increased strange little fidgeting at the sheets or whatever is handy. My mom is now doing all of these things.

{{{HUGS}}} I know this is very hard on you. Try to not notice these things when you visit with her, and let your hearts do the visiting instead. What a blessing that your mom is still at least able to talk with you! Even this is going by the wayside with my mom. Try to enjoy her as much as you can.

Hannah what you are going thru with your Mom are not uncommon symptoms for later stages of Lewy Body.

I experienced these behaviors with my Mom also who had LBD. I felt it was her minds way of coping with everything. At times she would also have hallucinations with her eyes squeezed shut. The worst was when she thought she was on fire but during her life she never was.(BG intersting about resident you encountered w/fire too??)

Mom recognized my families voices & even though she didn't look & see us, she still called us by name. As her disease progressed, she rarely would open her eyes & this was taking place while she(staff) were still getting up, dressed & into her wheelchair each day.

I know witnessing this is extremely hard on the family. When Mom entered this stage I would just talk to her, tell her about my day, what the kids were up to & how much we all loved her or just sit quietly with her & held or massaged her hands. I always tried to be upbeat even though I knew in my heart Mom was slipping further into the disease.

For some the later stage can take yrs, for my Mom it was only a couple weeks. LBD is a vicious disease & I thank God Mom didn't have to suffer a long time.

My prayers are with you & your family Hannah. Keep us posted & God's strength

Boy does that remind me of MIL down to the floor and right is a hallucination in my experience and to the left shes accessing memory lil trick I learned from my grandfather years ago telling if a person is telling truth or fables
Works real good with this I found.
So my thought is if thats the case maybe something she doesnt want to see in her minds eye because it disturbs her so thats why shes shutting her eyes tight or could be she is desperately trying to remember.
From what Ive heard Hannah they are aware of the loss of control even when their in the midst of something like this. What a horrible feeling that must be for them I cant even imagine other than when I was sleep deprived you see yourself doing something that makes no sense like placing the gallon of milk on a shelf in a cabinet rather than the refrigerator....Ok so I lost it one morning *chuckle* you shut your eyes shaking your head and in your mind your sayin "You IDIOT WTH was that?!"
But do you see what I mean we know its wrong but the body just keeps chuggin along in that direction.
Hannah maybe a picture chart might help you out?
Like common things that you and her talk about so when she is having difficulty you could pull it out maybe she could point out to you what she means when you cant understand her
Like a bed, light, book, music, dog, cat, pen/pencil, paper etc. Can she still write? maybe you could get a small dry erase board for her.

hannah, thanks for the extra detail. i didn't mean to imply your mom has post traumatic stresss disorder. i guess i should have addressed that to bg and her situation. i had a resident who would go from combat to the next day being dressed and waiting at the door to go to the american legion all for bingo or a chicken dinner. sometimes family can confirm incidents in the past to give an insite to the behavior. although no two cases are alike i can tell you that daisy does some of these things, not wth her gaze but her responses. it is hard for her to put together full thoughts or follow a conversation. often times i just do as you do when answering. it doesn't make sense to us but they are more satsified if they just go ahead. at first, when i met daisy she could recount things pretty accurately from her past and recognize her family and pictures of her family and of herself. slowly she would start getting them worng or just draw a bland. eventually she forgot everyone but me and one of her sons. now she doesn't remember either of us but knows we are familiar and friendly faces.now she just pats our hands and says 'you'll take good care of me, won't you,honey?' it makes it more difficult for you if her speech is so difficult to understand. really the only thing we can do is to go with the flow. corrections don't help her remember, some things just aren't there. you can still try, keep alert for facial signs of agreement or anger and you will start to get clues as to how to respond. don't know if any of this makes sense. sometimes daisy wil jsut sit and count her fingers over and over and in correct sequence but can't guess if i hold up three fingers. there is no rhyme or reason to any of it. daisy will also close her eyes, even if just for a minute and when she opens them it's Oh HI. how are you this morning?the sight of us is always new to her and a nice surprise.. and if i give her dinner, she will say she just ate and refuse. if i take it away and serve it from the other side wthout her seeing me coming up to her from behind she will say 'Thank you honey' and eat the whole dinner without hesitation. i'm sorry i don't have the answer. just sharing my experiences. take care.

This message has been edited. Last edited by: fat, dumb and happy,

More details...I'm not sure how helpful I can be because her speech is so difficult to understand that it is hard to know if she is talking to us or hallucinating. It doesn't appear to be a distress or post traumatic stress type reaction. We will be talking about normal stuff and her gaze will be on the floor and to the right. Sometimes she will then look up and say, "What?" or "Isn't it?" or something like that as if we are in mid conversation in her mind. Much of my responses to her are "oh" or "Yes" or "I don't know" because I can't understand her speech and she gets mad if I ask her to repeat something. When she has her eyes closed she will be talking and then suddenly look at us and say, "Oh hi.". It is only very recently that she has not recognized my brother and I 100% of the time. I wondered if she was aware of her gaze being off - in the sense of looking away on purpose - or if it is a worsening of her poor communication skills in general.

hannah, i have seen this behavior before as described by bg but i would need more specifics to understand if it applies to your mom. i have a feeling that it is very much like post tramatic stress disorder. flashbacks in a time we cannot visit. keep us posted and add more details. one thing about this disease for sure is that there is no for sure.

Hannah glad to see you back.
I actually saw a resident do this last week so Im wondering myself about this.
I think it has to do with the hallucinations or the memory they are in at the moment.
Do you mind giving a for instance for us?
Like what were you talking about with her at the moment.
The resident I encountered was fine one moment talking then went into either a hallucination or a memory of the fire and I mean it was almost like he was truly in the midst of it squeezing his eyes shut and talking/yelling thru it.
No amount of coaxing from me could bring him out of it the poor thing was frightened so bad.