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 Dad with LBD 
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Joined: Mon Aug 08, 2011 11:22 pm
Posts: 2
Post Dad with LBD
My dad is only 59 and was diagnosed a few months ago with LBD. We actually started noticing changes in him about 4-5 years ago, but it was very slow and gradual at that time. He would do something strange, and we would discuss it as a family, but then he would seem ok again. However, recently the progression is escalating on a huge scale. Over the past year, he has become more and more aggressive. It started with just being almost impossible. ALWAYS complaining about everybody. He went from a grandpa that loved to be around his grandchildren and take them places to someone that has completely driven the grandkids away. He became just downright mean. His memory has gotten horrible. He forgets where the glasses/plates are in the kitchen in the house he has lived in for 6 years. He tries to put on my mom's shoes. Can't remember how to do very simple tasks he has done all of his life. He is also very unsteady on his feet. Like he doesn't know how to keep his balance anymore. He is almost like an 95 year old instead of a 59 year old.

The way this diagnosis came about was not easy. My mom had been trying for YEARS to figure out what was going on. She even called his Dr. about a year ago and talked to him. My dad would refuse to go to appointments, and when the MRI and CT scan came back normal; he insisted he was fine and that proved it. We were afraid for my mom because of his aggressiveness. She has been verbally attacked over and over. He went over the edge one day, however, when I was visiting with my almost 16 year old daughter. We were in the kitchen talking and my dad was in the living room. My daughter being a teenager, did not like what my mom and I had to say and had a snotty response. My dad snapped. He came flying into the kitchen and got in my daughter's face and started screaming at her. I went to grab my son and my keys so we could get out quickly. Unfortunately, he started hitting her over and over again. My mom and I both ran over and tried to pull him off. My daughter was covering her face and head and while my dad was hitting her he was yelling at us to "get her off of me!" He then put his hands around her neck and started choking her. My mom and I were prying his hands off and he finally snapped out of it and started saying, "I'm sorry, I'm sorry." I took my daughter to the police station and made a report. My dad has NO memory of what happened that day. The only thing he remembers is yelling at her. Because of this incident, our whole family has been torn apart. My children have been traumatized. My 13 year old son witnessed this as well, and was trying to throw things at my dad to make him stop.

He was told by the police that he HAD to go to the dr. immediately and go to counseling or he would be arrested and sent to jail. This is how he finally got the diagnosis. His dr. sent him to a neurologist who gave him the diagnosis. None of his other family would believe it. My mom took him to another dr. for a second opinion, and he received the exact same diagnosis.

Wed Aug 10, 2011 9:35 am

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Dad with LBD
Welcome to the forum. I am so sorry to read about the trauma your family has endured, especially your children. The only good thing is that it brought about a diagnosis, and now you can begin to deal with that.

I am glad you found the forum because you can find a lot of support and information here. Maybe we haven't all been through what you have, but we have all had our difficulties and heartaches. I hope the forum will help you as much as it has helped me. It was a lifeline when my mother was diagnosed and continues to give assistance and support.


Wed Aug 10, 2011 10:33 am

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Dad with LBD
please share your journey…

I am taking the same journey as your Dad…

it is all so unfair…protect everyone…I am starting to understand how important that is…

remember you can't count on your Dad for anything….he is counting on you…and everyone else

Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years

Wed Aug 10, 2011 11:01 am

Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Dad with LBD
My heart and prayers are with you and your family. You will get through this nightmare that is called Lewy Body Dementia...

My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Wed Aug 10, 2011 1:05 pm

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Dad with LBD
Hang in there, with the right meds he may become easier to live with. It's such a balancing act and will take time. I hurt for your children. By the way, welcome.

Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.

Wed Aug 10, 2011 1:36 pm

Joined: Mon Aug 08, 2011 11:22 pm
Posts: 2
Post Re: Dad with LBD
Thank you so much for your replies. My heart goes out to all of you as well. I am still in shock and denial that this can be happening to a 59 year old man. I just don't understand.

Wed Aug 10, 2011 7:44 pm

Joined: Wed Mar 02, 2011 1:04 pm
Posts: 252
Post Re: Dad with LBD
Sorry you have to be here, but I am glad you found us...this is a wonderfully supportive group!

I, like Craig am on this journey too....

I am sorry for what you have been through but as others said I hope that at least the fact that it led to his diagnosis might mean it will lead to good treatment and some improvement...the medications have helped me tremendously.......

Take care,

Best wishes,


First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

Wed Aug 10, 2011 9:59 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad with LBD
My husband was very much like that in the early stages and also refused to see a doctor until 2005. He had changed from Dr. Jekyll into Mr. Hyde and I didn't know what to do. Medication finally helped but there were several years of meanness, violence and paranoia. He still does have some anger and agitation but Seroquel has reduced it immensely.

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.

Fri Aug 12, 2011 12:17 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Dad with LBD
Welcome, and I am so sorry for what you have all been through. I hope with meds your dad's anger can be controlled. Your poor kids, they must be very traumatized but with education about this disease they will learn that the behavior wasn't their grandfather, it was the disease making him do things he couldn't control. I wish you the best in this very hard journey. 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.

Fri Aug 12, 2011 10:13 pm

Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Dad with LBD
You will find supportive new friends at this site. Search the archives for lots of info. This site has been a saving grace for me; I hope it will be for you.

Donna (age 56) caregiver for mother-in-law Margaret (age 88).

Sat Aug 13, 2011 8:56 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dad with LBD
I just want to welcome you to the LBDA forums and sadly your intro sounded so much like the situation my family was in with my husband and his illness and he was in his 50's also not sure if the age has much to do with such severe aggression or not.
I do hope you can find some comfort here and it is a place for sharing !

Irene Selak

Mon Aug 15, 2011 7:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad with LBD
What a sad story. I'm glad that a diagnosis was finally made.

Mon Aug 15, 2011 10:55 pm

Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: Dad with LBD
I'm so sorry to hear your story. My husband is 59 and was diagnosed in 2003, but it took a couple of years. He went from outgoing to a hermit, but thank goodness he never became violent. My daughters were teenagers when he was first getting sick, and it was hard on them. They kept insisting that he could change if he wanted and they were embarrassed by some of his behaviors. Of course they know better now, but they were hurt--and that was without the violence. Your family will be in my prayers.

Wife of a 60-year-old LBD patient who was diagnosed in 2003.

Tue Aug 16, 2011 3:40 pm
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