thanks to all for the info and support.

It looks like there is going to be a lot of trial and error to get meds that may assist. The Aricept appears to be causing a lot of enhanced weakness which was not apparent previously. I am going to stop for a few days to see if she improves.

The symptoms may be the RA rearing it's head since she is in increased pain within her joints. She is taking increased doses of Naproxen which definitely helps with the pain level.

Lynn, no support groups that I know of for LBD, there is a Parkinson's group down in Dover.

Merle,
Not sure of distance but there is a group in DE see below, I hope it is something you could use:

Delaware Valley Lewy Body Dementia Support Group
When: Third Tuesday of each month, 6 p.m. – 7 p.m.

Where: Rockland Place, 1519 Rockland Road, Wilmington, DE 19803. 302.777.3099.

Who: Caregivers and loved ones of those with a Lewy body dementia diagnosis and who reside in Delaware, Pennsylvania, and New Jersey are welcome to attend.

Contact: Erica Browning, 302.299.7281.

Thanks Irene but Delaware is a stretch from New Hampshire but I appreciate the feedback.

Merle

Yes Merle,
I agree it is a bit far, I just assumed Dover DE, sorry! I'll go back to my corner now LOL!

I just noticed that it has been about one year since posting here. This will be my final input regarding Karen. she was admitted to Hospice about two weeks ago. As I write this Karen is entering the last phase on going into permanent retirement. The LBD has finally caught up with her. Her symptoms finally took a major downturn about one month ago. The doctor evaluated her and recommended hospice as the next step.

Her mobility was down to zero, hallucinations were increasing substantially and started having problems with swallowing. This ended up so badly that she could no longer take any food or water.

all I can say is that LBD is bad........

Merle, I missed your earlier posts on the forum because my mother was just diagnosed in 2/2010 and I hadn't found the forum yet. But anyway, I just read through all of your posts and just wanted to say that I am so sorry for the course that Karen's illness has taken. My mother is also taking a downturn at this time. You are right--LBD is bad! I wish you and Karen strength and peace during this phase.

Julianne

Hi Merle - I hope Karen's ending is as peaceful as it can be and I'm glad she has the support of hospice. They will make sure she is comfortable. I was thinking about you 2 when we drove through NH a few days ago. Sending you a hug. Hang in there and please come back here for support when you need it. Lynn

Merle,
This post certainly was sad to read, I do hope Karen's final journey is peaceful.

Irene - I had to laugh when I saw your posting to Merle because I figured you thought he meant Dover, Delaware! Are you back in your corner yet? Lynn