Hi,
My dad is 73 y/o and has LBD. I am 36 and my sister is almost 30 . I moved from MA to the southwest a year and a half ago. At that time my dad had already been in a nursing home for at least 6 months, maybe longer. He had his first delusional episode at age 66. They showed up around once a year the first few times, then more frequently. I was staying with him for a few months about 3 yrs ago and noticed that he didn't read or hike anymore. The memory and other cognition problems were not apparent to me for a bit longer and no one else in my family believed me until after he went into long term care and they saw his inertia and none of the fiesty personality that had been like a trademark. My sister says she thought I was nuts and had no clue why I was saying he couldn't take care of himself. I was just glad when a community psychiatrist saw (his own personal one still won't believe it) and filed with adult protective services. I was leaving a dangerous domestic situation, and not only could I not help, I really really just needed my dad back. Not that I need that less now. He was my best friend and I doubt I'll ever come across another person who understands me the way he did. We were like 2 halves of the same person, ADHD and all. I am aware that this is likely the future for me, but I wasn't ever planning on saving all my money to have fun and not spending it til I hit 80.
I have not been back to MA for over a year. Part of that is the fact that I'm not real big on bumping into my ex. But a lot is my inability to deal with seeing my dad. It stinks. I hate that I've ditched him- not the moving, the emotional part.
My sister and I share DPOA and as I am a psych nurse (go figure) I research and translate the med/psych for her and we make medical choices together, although I am the one who will be making the calls in emergencies. I'm ok with that. We talked and I know his wishes. He's a DNR, DNI, DNH and just started with hospice. Physically he can still does raise hell when he's there. He goes somewhere else in his head for periods. I think the staff likes him better that way.
Glad I found this forum, no one has heard of this stupid disease even in Boston. They act like we are making it up even at the LTC he lives at.

Well, welcome to the forum! Hope you will find the time to read as much past material as possible. We are all in this together and I hope we can be of help and support to you as well as learn from your experiences. God bless. PS: I'm also an RN but quit in 2005 to take care of my husband. Worked only briefly on an acute psych floor before moving on to trauma, surgery and then home health.

Sorry to hear about your dad, and your inability to deal with seeing him. Is your sister able to visit him?

I appreciate your posting a positive APS story as there don't seem to be many of these!

There's an active LBD support group in the greater Boston area, and some good LBD MDs there. You can find support group info on lbda.org.

I hope hospice is a help to your dad.

Alas, your story of not being believed and of having to deal with professionals who've never heard of this disease is not rare.

I hope that you will be able to visit your dad in hospice, for his sake and yours. I suspect that you will regret it if you don't see him again before he dies. On the other hand that is just a guess, and you gotta do what you gotta do.

Welcome to this forum!

Welcome to the LBDA forums, sorry for your need but glad you found us, there is lots of info here and I know so much is helpful to people who need so helpful idea's
Good Luck !

Thanks everyone....
I will definitely regret it if I don't see my dad before he dies. I am putting aside money. It isn't end stage, so although I'm not putting it off, I need to be at a spot where taking a week off of work would not leave me unable to pay my rent. I'm barely squeaking by.
The list of diagnoses under his name in the med book is alarming, absurd, and ignorant. We knew he'd been having psychotic episodes for years. (Pesky dept of homeland security) When we went to see him I asked for the med record and that was when we learned he had "dementia (of the alzheimers type)" close at least. That was not the best way to find out. It was the day before thanksgiving.
We had a neuro consult paid for with what hadn't been spent down. The doc made a provisional diagnosis and his findings were spelled out pretty clearly. They lost the paper. We had never had a copy and they say they don't think he ever saw a neurologist. His current ones- dementia, chronic paranoid schizophrenia, major depressive disorder with psychotic features, bipoalr disorder.....towards the bottom he is diagnosed with mental retardation. It's like, really, REALLY? If nothing else- don't they understand that one person cannot have all of those illnesses.
This is the wrong section for rants.... I believe I should be in symptoms etc....

Sounds like they just went through the DSM and checked off some diagnoses at random.

In any case, a clinical diagnosis of LBD is usually wrong. The only way to get a confirmed diagnosis (for most neurological conditions) is with a brain autopsy. You can read about that in a special section of the Forum.

Also, LBD typically co-occurs with AD so for someone to give a family member a diagnosis of AD isn't so far off.

Thank you for your openness and honesty.
I agree with Jeanne in hoping you can visit your dad. And Robin's idea about contacting a support group might lead you to the right medical professionals who can straighten out the apparent diagnostic mishmash that has been done to him, thereby getting him better medical support.
You are in my thoughts and prayers,
Pat