Mom was recently diagnosed with LBD. She admitted to some forgetfulness in Aug, 2012 and by Dec, 2012 it was apparent that it was no longer safe for her to be alone, so we moved her into my sister's home. Here we are 2 months later and she has hallucinations and delusions and paranoia and talks/mumbles non-stop. She is constantly trying to figure out what is first or real or where the epicenter is or where the 2nd coming will start and quotes scripture poorly. She talks to the devil and cries and thinks people have on masks.... etc, etc. She only sleeps an hour or two at a time. She really doesn't have much memory loss at all. I'm just wondering if this is "normal" LBD, and/or have others experienced such a rapid decline?

Our mother has declined very rapidly but she had a major stroke that took away her ability to compensate. The delusions and paranoia have been very bad. This morning I arrived at my parent's house to find her sobbing. She had thrown all the covers off the bed, cleared her bedside table and undone her brief. She said that Dad was torturing her and he hated her. Now just last night Dad had sat by the bed and had his arm over her and his head on her pillow while she scratched his back and they talked. We're doing our best to keep her in her home but my father is wearing down both mentally and physically. When Mom started Aricept, her nights were much better. She was still delusional but didn't get as agitated and upset.

Fast decline seems to be one of the characteristics of LBD, and different people experience different types of decline. My dad became paralyzed, disoriented, incontinent, immobile overnight. He was able to regain a few ADLs, like eventually relearning to feed himself and walking a little bit for a while. He went from living in his own home by himself with aids coming in a couple of hours a day to being hospitalized, going to rehab then to assisted living. I am so glad he and I had chosen an assisted living place BEFORE he needed it. When he had his huge decline it would have been very difficult for me to have to find a place for him to live while trying to deal with the hospital, his house, his bills, his finances, etc. Being prepared ahead of time can be an immense help. Sending cyber hugs, Lynn

You're all in my prayers! Dealing with this disease is so heart-wrenching and frustrating. God bless you.

Sounds familiar. My mother calls me all night and all morning if I leave the phone hooked up. She is so frightened of everything and can't tell reality from fantasy/lucid dreams. She also has all sorts of pain - frequently a phantom sort of pain. I feel so sad for her and so defeated by this disease. I am absolutely terrified that I will someday be in her situation. I can't imagine wanting to live like this. My mother spirals - she gets slightly more functional and then gets worse. She is always desperate, frightened, angry. I don't know what to do. Current Assisted Living (with memory care) is now preparing to ask her to leave. I can tell - they don't feel that they can meet her needs. But she is horrified that we will put her in a nursing home and in all honesty, she cycles and I can't imagine there not being spans of time in which she would be inappropriate at a Nursing Home. The head nurse at the current facility, however, thinks that she has declined a lot in the last two weeks. If it is like the last two years, she will return to a less serious level for awhile and then start the decline again. It really breaks my heart. I am not sure that there is an uglier disease. I think that I would rather have some form of dementia that I was less aware of. What a horror to constantly be aware of what you are losing.

Liz

I can relate so much to what you are saying, Liz. Once my dad was put on Namenda and Aricept, he was less in the "lala land" mode of dementia and became so much more agitated and depressed because he became so aware of how bad off he was physically and mentally. Because I was not asked if he could be put on these meds, and because the CNP and psych. would not take him off of those, it was a constant heart-breaking battle. Looking back, I should have moved him out of the ALF and brought him to the state where I lived because there were no other choices for his medical care where he was in rural MD, and he could not be in an ALF without a "dr.", who was basically his CNP. If any of you are in similar circumstances where, no matter what you do, the medical team will not change your LOs meds, despite the problems they are creating, I'd recommend moving them to another location where you can get other medical personnel. It is so heartbreaking to see our LOs in this awful state and not be able to get the help for them that they need. Big hugs to all, Lynn

My Dad was diagnosed with DLB last summer, but I think he's had it longer than that....like for a couple of years before he even had his stroke, which he had in 2011. Since he's had a stroke it's more difficult to determine whether or not he hallucinates or not, but he did go through a stage about 2 months ago where he was constantly talking, and even more so at bedtime. He'd just chatter on about things even though we couldn't understand him, and finally fall asleep while talking. Not for very long though maybe only 15 minutes, then he'd wake up and chatter somemore. Since his diagnosis, he can't feed himself, dress himself or take care of any ADL's and is incontenent. This disease is really aggressive! I wish I knew what was next!

Karen,
Just wanted to welcome you to the LBDA forums.

Hi Irene, thank you for your welcoming!