Hi everyone, not sure where to start but, my mom 73 has been diagnosed with LBD/un-determand. She has had a history of UTI's for years. In fall of this year she was diagnosed. She is in complete denial of this. She has people that she talkes to on a regular basis. My dad is home with her and he is a realist ( has to see it, feel it, touch it,ect.) and is having a very hard time dealing with this. He gets frustrated with her and her "guests" and delusions. The people and things she see's and talks to are VERY real to her. Sometimes the "guests" are out to harm her. She has done desturbing things and we are not sure how long she has had this but she says that her doctor doesn't know what she is talking about and wants a second opinion. Which we have coming up next month! I would like to know if there is a questionare that I can take to this new doctor of questions that I should ask. Her doctor now has her on Lorazepan and Zyprexa for anxiety. I hope and pray that the new doctor can help mom and dad understand what is in store for us all.

Hi - you should be able to get a lot of ideas on this forum, where we are all dealing with LBD in some way or other. Someone suggested that I get the pamphlets they provide, which I ordered yesterday. I want to get them to my dad's drs., some of whom don't seem to know much about LBD.
I have found all the info. here very helpful - you might want to do as much reading as possible before you see the dr.
Also, you'll find lots of helpful supportive people on the forum. Lynn

I suggest you read Dr. Brad Boeve's "Continuum" paper on the proper treatment regimen for LBD. (You can find it on lbda.org by doing a search.) You've said nothing about dementia drugs your mother is taking. If she's not taking any, that's where I'd start. The situation *might* improve with dementia meds.

Zyprexa is not the first choice of most LBD-savvy neurologists for an antipsychotic.

And not all with LBD can take Ativan (lorazepam).

So...start with Boeve's paper, ask questions accordingly, and you can't go wrong.

Lynda,
Welcome! The best way to try and understand LBD is to educate yourselves.You are right her visions are very real to her and perhaps if Dad tells her he understands she sees these things but he can't it might open the conversation better for them, a great deal of caring for someone with LBD is the caregiver has to except whats going on.
Good Luck and read the Boeves paper as suggested !

Also, contact your local chapter of the Alzheimer's Association and see if they have a class on dealing with dementia-related behavior or a support group your father can attend. In our area, the local caregiver resource center teaches such classes, and they are terrific.

Thanks for the info. I printed out a lot of papers to look over. Boeve's paper is alot of good information. I need to get book to understand some of the (Doctor wording) but I will catch on. Thanks sooo much for all the help.

I have a 1-inch three-ring binder that I keep my LBD information in. I've got a copy of the Boeve Continuum in there. I have the medical reports from the LBD doctors that I've consulted (be sure you ask for one when you have an appointment). I have printouts of some conversations on this forum. I have names of caregivers that I can hire at a moment's notice, etc.

Honestly, I have that binder with me all the time. It has been so helpful because I never know when I'll need that information quickly. The free pamphlet that I've recommended to people is called, "Facts about LBD Lewy Body Dementia". You can order it off this website under the Professionals tab when you click on "order free patient handouts". There's lots of other good stuff there too.

Keep in touch. You're among friends. Good luck to you and your family.