Hi Irene,
I hope you can help me with a question or two. My Mom has has LBD for about 5-6 years. It's hard to be exact about when it began. Since her diagnosis a couple of years ago I have been reading about the symptoms etc. The progression is what I am confused about. My LO has been putting along on kind of a plateau. She has had some decrease in her bladder control, but basically not worsening. This past week has been terrible. She was up during the night for 4 nights now She has never done this before. She went to bed at 10 last night, up at midnight, right back in bed, up at 5:30 AM, right back to bed, up at 1PM, showered, ate, sat on the couch and now been asleep for almost 5 hours. She was weak today and very shakey. This is a very BIG change. I am concerned that we might need to get a referral for visiting nurses or hospice. We have an appointment tomorrow and hope I can get her there. Do LBD patient have terrible days and bounce back, or is this sudden decline to be expected? I just need advice.
Thanks,
Sallyann

Hi Sallyanne,
Sorry you are going through a rough time with your Mom right now and after reading your question the 1st thing that came to mind was , many times with LBD if there is a sudden change I would have to think infection, has she been checked for a UTI, that would account for the sudden up at night, something is bothering her and she can't express it and I am hoping this is it because if it is she can go on an antibotic and everything should be where it was.Normally if there is a sudden decline it is linked to something else. Good Luck let me know how she does at the Dr and I would check out Hospice and see what they can offer, all's they can do it turn her down right now if they think she is too high functioning. Requirments for Hospice is terminal Disease and she has that.

Irene,
You are so smart !. My Mom did have a UTI. We started some antibiotics. He did a mini mental exam on her and she scored zero. The doctor (who I work with occasionally), was really sad. He said to me, very gently, this is not early, or moderate, it's severe dementia. No DUH! I think because he knows me, he's cautious about how he tells me information. He wanted to make some changes to her meds. I just told him I didn't want to make any med changes until the UTI cleared up. I told him I thought that was problably the cause of the fatigue and getting up at night. So, on the road to recovery!
Thanks for your help.
Sallyann