Hi everyone, I am new to this forum, I actually joined last October but has taken me awhile to participate. My 86 year old mum was diagnosed with LBD in July last year. I am an only child, and a mother to 3 teenagers. Sadly after mum was diagnosed (and a 9 week hospital stay) she was unable to return to independent living & we sadly had to place her in a nursing home. Prior to my mum being diagnosed I had never even heard of LBD.. What a rollercoaster ride the last 6 months has been for us all. My mum had been complaining of hearing music constantly, so we took her to her GP who prescribed Serenace, after taking these meds for a week and no improvement we took her back to her doctor, who then doubled the dose of Serenace!!. This is when things completely fell apart for her. Within the space of a week, this once independent, fully active women was completely bed ridden, unable to walk without assistance or even get out of bed. Her auditory hallucinations increased from just music playing all day to threatening voices that wouldnt stop. We ended up calling an ambulance after her GP was too "busy" to fit her in for an appointment after things became unbearable. She spent 9 weeks in hospital and was there diagnosed with LBD.
Mum is now living in a nursing home and is on the Exelon Patch and also Serequel, these two drugs have somewhat helped mums hallucinations but she is still declining slowly. Her short term memory is almost gone, and as no two days are ever the same, you just have to roll with what the day brings. Most days she is confused and forgetful but we are trying to make the most of the "good days" as we know these wont last forever.

So that is our story in a nutshell, sorry to have rambled on abit. LBD is such a horrible disease, & I have found that even with caregivers and medical personnel its still not widely known about. I have lost track of how many times I have had to explain to caregivers & the medical staff at the nursing home exactly what LBD is, most just say "yeah its the same as Alzheimer's!!

This looks like a friendly supportive place to be, and I look forward to getting to know you.
Its nice to have a place to come to like this where people really do "understand"

Hugs
Robyn

Welcome to the forum, Robyn! So sorry you have to be here. We care! Hugs and prayers.

Welcome to the forums Robyn. I too am amazed at how many medical personnel we see that have never heard of this disease.
Ellen

Hi Robyn,

Sorry to hear about your mother. It seems that Serenace is the Australian name for Haldol. What a dangerous medication! Did your mother have any parkinsonism symptoms before Serenace was given?

LBD common co-occurs with Alzheimer's, so it is likely your dear mother has both.

Robin

Welcome Robyn - yes, so many of us have had similar experiences. This is a great place for support and information so I hope you'll stop back often. Lynn

welcome robyn.. hopefully in reading the posts on here, you will find some answers, that will help with your questions, about what is going on with your mum... if not, don't hesitate to ask.. lots of wonderful folks on here, that selflessly share their knowledge....
wishing you and your family well...

Hi Robyn,

Welcome! I am new as well, and my story sounds so close to yours. I am an only child and have two teenagers (13 and 16). Everyone here has been really great at answering questions and giving support. I hope you find that it is the same for you. I know it's tough dividing your time between your mother and your children. Hang in there, and know that you are not alone.

Thank you for the warm welcome, it really is nice to be where people truly understand what is happening & the rollercoaster ride that we all find ourselves on.
I look forward to getting to know you all, hearing your stories, offering support & no doubt asking a million questions myself. I hope today was a good day!!

Keep smiling

Robyn

Robyn - do a search on the topics that are most important to you at the moment and read lots of other postings when you can. There is a ton of info. on here, and sometimes, just knowing that someone else is or has gone through what you and your LO are can be a comfort in itself. Lynn

Robyn,
Sorry for the circumstances that bring you here, but glad to welcome you to the community. I don't post as often as many, but I definitely feel the support and caring that forum members offer here. Is your mum on any drugs for dementia symptoms? Aricept really helped stop Mom's slide, I believe. But each person's reactions and symptoms are unique, for sure. Welcome.