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 Acting weird 
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 75
Post Acting weird
I am in my fourth heart with LBD. It has been an interesting journey. I have had contacts with a number of others with LBD and one of the issues I suffer from and now know others do also, is doing things that are out of character for me. For instance, making a paper hat an wearing it during a Church Board meeting! My wife corrected me and I got angry because she was so abrupt. Looking back, I know she was trying to keep me from embarrassing myself. There are other times when my actions were out of character.

Evenings are my hardest. Sundowning is a real part of LBD. Especially days that I do not get out in the sun. Noises on the television make me yell and scream. Sometimes I loose my temper and have fits of rage that are uncontrollable. That is when my wife steps in and calms me down. Again, this is out of character for me.

Crowds and social events are overwhelming for me. I would much rather stay at home, in my familiar surroundings. A good day for me is a day that I don't get dressed! That means I have had no contact with the outside world. So, I have no upsets in my day. Again, I was a gregarious person before this disease. A public speaker, a Pastor, a military leader. Large groups were my energy source. Now, anything out of my normal routine is feared.

I now from emails from others with LBD that these issues are "Normal". Yes, I do weird things. So do they. It is part of the mental decline that LBD causes. But still, it is good to hear from others that are experiencing these issues.

Thanks LBDA!

Mon Feb 24, 2014 12:55 am

Joined: Tue Dec 31, 2013 12:55 pm
Posts: 16
Post Re: Acting weird
I can relate to what you are saying. My husband has LBD and he too was a pastor. The disease forced him to step down. It has been tragic and yet God has been faithful. My prayers are with you and your family.

Tue Feb 25, 2014 12:15 pm

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: Acting weird
Hi Donald,

I'm sure it must be very had to believe that something can change you so totally and then watch yourself from the outside in so to speak! I think we all have to remember that the brain is just a part of our body and when it's damaged it works differently. It's as though your leg is broken, you walk with a limp or you loose your sight and you bump into things. LBD damages pieces in the brain which causes the brain to do things differently or not at all. My Dad had a brain tumor which grew unnoticed until it affected his memory so totally that he couldn't remember that he'd just eaten a cookie. When he went in the hospital we'd tell him he had a brain tumor that caused him to forget all short term memory. Then we'd leave the room and return he'd ask what was wrong with him again. His longer term memories and everything else were fine, just the short term memory. That's how crazy the brain can be! So try not to be too hard on yourself - it's the disease causing the actions, not you!

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Wed Feb 26, 2014 2:14 am

Joined: Mon Mar 24, 2014 9:50 pm
Posts: 3
Location: Arizona
Post Re: Acting weird
My husband, diagnosed with LBD 2 years ago, was also a pastor - is this common in pastors? His cousin, who is the same age as he is (81) also has LBD and she is a pastor's wife. Is something strange going on here?

Mon Mar 24, 2014 11:50 pm

Joined: Mon Jan 27, 2014 11:10 pm
Posts: 88
Location: Canada, Ontario
Post Re: Acting weird
Hi All; I don't think it has anything to do with being a Pastor. My husband was an industrial salesman and he has LBD. It is definitely God giving some the final test to see how they accept anything that fate throws at them. Trust in His all knowing brain and He will see you through. Anne

Tue Mar 25, 2014 1:02 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Acting weird
Donald, my husband also found social events overwhelming. He especially hated chatter.

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 Mar 26, 2014 10:56 am

Joined: Sun Nov 10, 2013 9:25 pm
Posts: 3
Post Re: Acting weird
My husband shares the dislike of socialization. He is a young 56 diagnosed 7 months ago. He appears to have a rapid progression dementia. I suggest you honor your new dislike of socialization. My husband is exhausted simply by a nurse visit at home. He finds that he is more "himself" if he simply doesn't socialize until the evening. By that time, he is often deep in the disease, and then he likes companionship.

All the best.

Tue May 06, 2014 8:57 pm

Joined: Wed Nov 13, 2013 3:30 pm
Posts: 116
Post Re: Acting weird
My husband is only 53.... diagnosed 7 months ago.

Routine and quiet are VERY important. He can handle church, because we're a small congregation and it's part of his routine, but he cannot handle the movies or parties with more than 4 people. It's too much input into brain.

Thu May 29, 2014 7:43 am

Joined: Thu May 15, 2014 10:41 pm
Posts: 167
Location: Phoenix, AZ
Post Re: Acting weird
My Dad got to the point where he was very stressed out by the presence even of his beloved dog. He worried that the dog wasn't getting enough to eat (every 15 minutes). When Dad moved to an ALF, we could feel his relief. The 24/7 worries of home were removed, and he had a small space that was his own private sphere. There were other challenges with the move, but the difficulties were outweighed by his level of newfound relief in the privacy and significantly reduced stimulus.

Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.

Thu May 29, 2014 9:33 am

Joined: Sun Mar 30, 2014 5:11 pm
Posts: 129
Location: Hawaii
Post Re: Acting weird
Hello everyone! Overstimulation is certainly a major problem with LBD patients. And it's always changing, evolving into smaller and smaller circle of people that can be tolerated at any given moment.

You, as the caregiver (or primary one at that moment) have to monitor the environment constantly. People, outdoor noises, TV (eventually had to turn it off for my mother, as the hallucinations associated with it were frightening), even pets! Too many things caused unnecessary worry. With visual and auditory hallucinations, there's already a lot happening with our LOs!

Donald, you may want to avoid too much stimulation from TV by avoiding certain rage-provoking shows or limiting viewing time altogether. I feel for you, having this disease, but your courage in writing in and trying to function to your fullest is inspiring! AnneAAA

AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.

Thu May 29, 2014 4:21 pm
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