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 New from Indiana 
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Joined: Tue May 10, 2011 11:23 am
Posts: 1
Post New from Indiana
My dad is 75 and was diagnosed with LBD after seeing 7 docs in three states with in a six month time frame. He had many tests, evaluations, scans, pet cans, MRI scans and has been off and on many, many medicine combinations. He stayed with my brother in AZ for six months going to senior daycare and has now been with me in Indiana for a year. It was my primary care doctor who looked at all the massive amounts of testing and information and suggested dad has LBD. I started reading up on LBD and thought, “Wow dad is the "poster child" for this disease". He was first diagnosed with severe depression, psychosis and paranoia. My mother died from cancer 5 years ago and dad refused to sell his house and move closer to family. He lived in the house he built for my mom and us kids by himself. He made it a shrine for mother. I started to worry when he seemed so confused when I called to check on him. I lived 7 hours away in Indiana and he lived in Ohio. He started telling he saw things like a cougar feeding her cubs in his back yard. There are no cougars in north eastern Ohio. He then started seeing people who were not there and taking pictures to prove my deceased mother was visiting him. Then he believed his life was in danger and someone wanted to steal his money from the bank. It all cumulated with him running out into the road in front of a truck to get away from two men with guns. Fortunately, the truck driver saw him and took him to his bank where he had a public break down. I was called while he was at the scene and had to make decisions from long distance. The police had him sent to a hospital psych ward where he stayed 8 days to be evaluated. Now, he lives in an assisted living facility here in Indiana because he wanted his own place and didn’t want to live with his kids. I am not sure this is the best place for him but he can’t live by himself as he can’t do many things he use to do. I can’t believe what a steep slope he has been on this year. He just keeps going downhill week by week. Then as soon as I have accepted his present state of mind he goes and has a huge lucid period where I can’t believe he is really that affected by LBD. It has been such an up and down ride with him and this illness. I have been reading here for a long time and finally decided to say hello and become a part of this community. Thanks for all the help you have already given me to date. God bless you all and your LO.

Tue May 10, 2011 12:15 pm

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New from Indiana

Welcome to the forum. I'm so sorry for what has happened to your father, and your family has had a tough go of it, starting with your mother's illness and death. It is good that your father was diagnosed and has been moved to an ALF and is closer to you. This must be a relief.

Yes, LBD is a real roller coaster ride and very hard on everyone. I am glad that you have decided to participate in the forum, as you will find lots of support and help. I'm sure I would not have made it through the last year since my mother's diagnosis without it.


Last edited by Julianne on Tue May 10, 2011 5:52 pm, edited 1 time in total.

Tue May 10, 2011 12:48 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New from Indiana
Hi Janny - so sorry for what you are going through, and I'm glad you decided to write and become a participant in the forum. You know what we've all been going through, and we can relate to your situation with your dad. So sorry, but welcome! Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Tue May 10, 2011 1:20 pm

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New from Indiana
Welcome to the family Janny. You may have been a silent partner until now, but the advice and support you will get by participating is second to none. God Bless, Ger

cared for Dad who passed away on January 28th 2013 R.I.P.

Tue May 10, 2011 2:07 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from Indiana
Welcome to the forums and glad you decided to say hi to all of us, lots of changes in a short period of time, I suspect this has probably been going on for a while and I am really glad you all were able to get a handle on his care before he actually hurt himself, we never know if we are doing the right thing but you are doing something and that's what counts !

Irene Selak

Tue May 10, 2011 5:32 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 194
Location: Portland, Or
Post Re: New from Indiana
Hi and welcome! Sad that you have to be part of this very confusing disease. We just went through a very long lucid period with my mom, too. She seemed so normal for about 5 weeks but I see signs starting to show up again, she's once again seeing people and things that aren't there.
Good luck, Ellen

Wed Jun 01, 2011 3:38 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New from Indiana
Welcome to the forum! Your father is probably where he needs to be right now. Trust me when I say that nothing you can do for him will stop the awful progression of the disease so you may as well go with his wishes to have his own place. God bless you for caring for your father in this troublesome situation. Hats off to your PCP for the dx. A really good PCP is a godsend.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Jun 01, 2011 4:46 pm
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