My 65 yr old dad was recently dx with LBD after previous Alz. and PD. He's really failing and it's hard to see this once very vibrant strong man reduced to shuffling and constant reminders. Complicating matters is that he lives several states away and his primary caregiver either doesn't care to find out info about LBD or can't accept it so getting meds taken correctly has been a big issue. Dad also has extreme paranoia and believes people are trying to drug him. He's been anti-drugs his whole life and so this plays into his paranoia and delusions. Makes getting him to take his meds challenging! My sister and I are trying to work through gathering information about LBD and trying to decide what to do next since he is at home alone most days and really shouldn't be.
It'ss great to have this network and so we'll be checking in to see how people live with LBD on a daily basis and what we can expect.

Thanks all for being here.

jmon,
Sorry you have found a need to be here, but welcome!
Robin

Jmon,
Welcome to the forums, I too am sorry for your need to be here but I am sure you you will learn a great deal here, it is hard when a Loved one is so far away .

Hi - when I was told in late June 2009 that my dad "has had dementia for 2 - 3 years but now is unable to hide it" I got home care givers who came in early a.m., lunch time, then 8 - 10 at night. In between times he started falling, calling neighbors to pick him up off the floor. He went downhill very fast. Within 3 weeks he was in the hospital (my idea to have rescue squad take him to hospital after last fall to find out why he was falling. He could not do anything for himself, even sit up in hospital bed. From there he went to a nursing home/rehab center, then moved in to Level 2 asst'd living. I know that I could not take care of his needs - he needs EVERYTHING done for him. Because his decline was so rapid, it caught me totally unprepared. Start looking for alternatives - this rapid decline could be in your future and for me, it's better to be prepared, especially with a parent far away. I drove the 1,000 miles roundtrip every week or two this summer to take care of stuff that kept happening. I had to leave my youngest son, husband, home and my life to take care of all this. It was a nightmare..... Things are somewhat stablized for me with him in asst'd living, but I still get "emergency" calls all too often.
I hope I can help someone else who is going through the early stages of dealing with this. LTCVT