Having to interact with others does seem to tire him out a lot. I try to sit there and just be quiet with a book or my laptop unless he wants to talk or have me push his wheelchair outside (didn't want to do that at all this time despite the lovely fall weather in MD).
The hospice nurse thinks he is starting to shut down. The almost not eating thing has been going on about a month and is getting worse. He drinks some, but who knows how much he should be drinking? He eats just about no protein - everything "tastes horrible". He does drink a little Ensure, though but not much of that either. Lynn

Do not underestimate thier ablilty to remember, think or reason at any given time. I have seem it time and again where mom will try and tell me something and when I figure it out it's amazing. One night (example) she trying to remind me to take her denture out of the solution before I left the room as they're only suppost to soak 10 min. because of this soft liner. I forgot. Many times they are prisoner in their physical and mental body. Lewy, how sad!

Laurie, you are so right! How many things we attribute to cognitive impairment are really just inability to communicate effectively?!

I, too, think my dad sometimes is cognitively better off than his verbal skills can handle. I notice some of his caregivers know what he is saying or intending to say and others are clueless. I think that's why he gets mad at the same people over and over, like one of the nurses he has. When she walked out of his room a couple of days ago he said "I can do without her" and I totally understand why. She is the one who's been telling me and his CNP that he "didn't have an agitation issue" - she has a total lack of nonverbal and verbal cues from him. I don't know how she is with others there, but she is completely tuned out to my dad. Thank goodness her new boss is totally the opposite. Lynn

Went to visit dad yesterday and two of his friends were there visiting when I arrived. They were having a great chat and a laugh and dad was coming out with his quirky little comments and we all had a relaxing time just laughing about what they were doing and dad informed me that they were both "Gunnas" like him always gunna do this and never finished anything in their life. Funny, mum and my sister had said this to me but in a derogitory way, and here was dad admitting to it and having a laugh, go figure! His friends were very complementory on his current condition as his speech is good and the fact they we were all able to talk was great! One of his friends was actually in hospital during dads stay there before he was put into care and he was telling dad how he had sat by dads bed and talked to him and defended him when dad lashed out at the staff saying "He was a very kind man and this is not who he really is" He was truly an angel and dad could not remember him even being at the hospital and apologized about the fact that he unintentionally had struck out at his friend while having one of his delusional episodes. I told him that one visit the doctors came to see him on their rounds and when they went to pull the curtain around for privacy half the hooks had been ripped off by him. (We all laughed at that too) He had no idea, and when we talked about it later in the mood room i said that I do believe in angels and what were the chances of this friend being in hospital at the same time as dad and being able to sit with him when mum and I were not there and defending his honour. We both had a sob at that and when I apologised for breaking down dad said " don't be sorry it is good to have a cry just get it out and you will feel better" He is so in a good place at the moment and I pray he can continue to be this good but at the same time bracing myself for a fall. One last thing I want to share is something else dad said to his friends, He said " You know some of the stuff I say is not true, and didn't really happen" that blew me away like he owned it. When i asked about mums visit over the weekend he said it went well. That he started to tell her about some of the things he was seeing and she got dimissive so he said he just stopped talking about it and saved the stress of another argument. Another turning point, I hope he can continue to mend his and mums relationship to a point.

Irene, when my LO was having the balance problems back in June, we went to a ENT who told me her hearing far exceeded any one
her age. The Frequency reponse line showed she had hearing that was very sensitive. Lately her speech has improved. Usd to be when she
took her temps (False) teeth out at night I could not understand her. Now I can. Also her REM sleeling I have been confusing with hallucinations. She told me last night she had to pick up the papers for the baby she adopted in New York. She has a lot of moments that she is totally with it. They only last for -10 minutes but what joy I get from them. Thanks to this support page, I am able to deal with this a lot better

Oh yes, by the way. The backward balance problem was apparently caused by a reaction to the Azilect. When taken off it, the condition corrected itself

Leone, I have experienced the same thing with my LO of seeing people and then saying there really isn't anyone there is there. Then she started asking more about why.

Glad the backwards balance issue is resolved, sometimes we think we are doing the right thing with all the meds our LO's take but in all honestly less is better!

My husband has been 'seeing people' since before he started Stalevo [similar to Sinemet]. While levodopa-carbidopa drugs are known to cause hallucinations, these are also common in LBD. I've tried dropping one of his three daily doses for several days and haven't noticed any benefit but have seen increased stiffness.

Pat,
For a long time we used them too and slowly dropped the dose from 4x a day down to one only at 6 am that helped getting him moving for 7am , I know the first dose we dropped was the nightime one as it didn't matter as he was in bed anyway, He remained on the Exelon almost until the end but I never really seen any major improvement, at his next appointment they were going to start the Namenda but he passed before that happened. I really don't know the right answer for the drugs, just very hard getting the right combo !