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 Belligerence 
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Belligerence
Kathy, I agree with you about putting your foot down with doctors about prescribing certain meds. It's what I will continue to do.

I wonder how many on here have pets that they've taken to the vet, only to have the vet find something that he/she is convinced is causing the pet pain and that your pet must obviously be laying around all the time rather than being its usual self....which isn't true; because as you've observed, your pet has been its usual self, frolicking around the house, eating and drinking as it usually does. And at the time you wonder whose pet your vet is talking about and how he/she could possibly know whether or not your pet is actually in pain, only to have your vet tell you that you must be wrong about how your pet is acting at home. Your pet couldn't possibly be doing anything other than laying around writhing in pain.

Sound frustrating? Well it is, and that's how I feel every time one of my husband's doctors doubts what I'm saying about what I'm observing with my husband at home. His new neurologist here even doubts that he has LBD, so I'm going to have to educate that doctor when we see him again. Grrrr. As if I need this in addition to what this disease is doing to my husband!

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Beth


Sat Jul 28, 2012 11:34 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: Belligerence
I read that in my research from the beginning -too many dr's don't know about LBD,and you have to educate them. First neurologist prescribed Haldol (!), first psychiatrist hadn't even HEARD of LBD. Now we have a great psych. and the neurologist who prescribed the PD meds will probably not see us again. WE have to be the advocates, and it's a duty I've taken on willingly, because I see the outcomes.


Sun Jul 29, 2012 1:02 am
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Joined: Mon Dec 12, 2011 3:46 pm
Posts: 19
Post Re: Belligerence
Hello there,
Thought I would send a note. Have not been on here for a while - looking after my Dad with LBD. Re belligerence: the meds definatly had my Dad acting out in a belligerent way. Yes, they can be belligerent without the meds - but in my experience, the medications, at least for my Dad, made it exponentially worse - not better.

Dad was on a chemical mix over medications which I always maintained were not good for him, in his case. Because they were "not working" - the doses were continually upped. I mentioned my being concerned of the side effects and was poo-poo'd (because of not being a doctor, or clinician or having training).
They were finally persuaded to try weaning him off the anti depressants (yes, that is right - 2 of them), the exelon, and they leave out doses of seroquel when his blood pressure is too low. Dad is much much better - deteriorating to be sure, but not nearly as "belligerant or aggressive or resistant" et cetera. For me, it is all palliative now - if he is less anxious and aggressive without the drugs even though this has him not living as long and dying sooner - then, personally, I am fine with this. It is about him and providing him as much comfort as possible.

And the win-win is that he is way happier, follows directions way better, eats 3 awesome meals a day, and the nurses and aids "like" him better.... so what more could I ask whilst he is suffering such a horrible disease ?

Hope this helps....


Tue Aug 28, 2012 2:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Belligerence
Glad to hear your dad is better. Antidepressants often have a decidedly adverse reaction in the elderly, particularly those with dementia. I'm always surprised to see how often they are prescribed. As a clinician, I had many of my patients taken off them in consultation with their physicians and not one was the worse for it and many improved. With almost any medication in the elderly, less is better.

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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.


Tue Aug 28, 2012 2:09 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: Belligerence
I think that's what we all fear -that we can't take care of them any longer and they resent us for it. Luckily, my husband got better by removing a drug. I don't know what's in the future, but I did find out that I can't do this if he's belligerent. Period. All I did was cry. I don't know how the professional caregivers do it, tho I've heard that LBD patients are usually worse with family. Anyway, I feel for you so much, but I'm sure you've made the right decision for yourself and him. I don't know whether it would work to say, "If you act like this I'm leaving, " because logic doesn't work for them any more. I'm so sorry - we all feel for you, but you have to try to be strong and know your limits. What is it with men with LBD and guns? My husband is on about that a lot, thinks there are drug dealers and thieves everywhere, wants to shoot the snakes and bears he sees. We got rid of his guns long ago, but he still talks about using weapons. The disease must hit weird spots in their brains that bring out these tendencies. Did your husband hunt? Mine did, so guns were familiar to him. Anyway, hope you can feel my good wishes and hugs coming your way - I may be there soon enough.


Tue Aug 28, 2012 5:41 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Belligerence
Interesting---my husband was never a hunter nor a gun enthusiast. His only [to my knowledge] experience with firearms was in the British Army. But once,back in 2007, he thought the neighbors were shooting at us and wanted my 12 gauge shotgun [which my father had given me years ago]. Fortunately, I had hidden it [and hidden the shells in another spot] and I told him my BIL had borrowed it. Scary. You're right--Lewy seems to trigger a violent nature in their brains that had lain dormant before. I gave the shotgun to my BIL and later had to hide the knives and scissors as he tried to stab me one day when he thought I was an impostor. :cry:

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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.


Tue Aug 28, 2012 6:09 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: Belligerence
Oy! Things do get exciting! Trying to stab you?? My husband hasn't tried anything like that, and I THINK his frailness would prevent it -plus he doesn't really know where I keep the knives, so I could beat him there! (We gotta laugh sometimes.) Yeah, I marvel at the weirdness that comes out of his mouth -he's gotten obsessed with sexual things lately, which I also hear is common. The topper was when he hurried into the kitchen with his cane when I was cooking (this after he'd JUST been reading the paper quietly) and demanded, "What about the project?!" When I asked which project (silly me), he stuttered, "Why, the one - the one about sex and citizenship!" Of COURSE. I hope that research can cure this disease, because when I'm not laughing I'm crying. Or exhausted trying to keep up with what he'll do or say next.


Tue Aug 28, 2012 6:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Belligerence
Yep, Lewy does have its funny moments. Once when I was helping him in the bathroom he told me there was a piece of wood in his pants. I looked and--you guessed it--an erection! :lol:

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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.


Tue Aug 28, 2012 9:32 pm
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Joined: Mon Dec 12, 2011 3:46 pm
Posts: 19
Post Re: Guns. Could it be a fear of violence and unable to prote
The Guns - that is so interesting! My Dad was so worked up over guns for about 4 months or so ... Of Note: he is such an unbelievable softy - in a good way - completely non violent. Never hit nor shouted. He did not swear not did he even say Oh God. He even stopped fishing because he didn't like killing the fish. LOL. He was completely against hunting and/or harming animals, birds and insects ... and had no respect for people who were into guns... but the LBD brought visions of people in bushes with guns... I pegged it as a fear of my Dad's because he was so non violent that he feared violence...and guns were a symbol to him... but interesting to hear that other LBD'er caregivers have experienced the same thing...


Wed Aug 29, 2012 2:50 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Belligerence
Pat, lol lol :lol:

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


Wed Aug 29, 2012 9:19 am
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: Belligerence
It was so helpful reading this thread. My mom continually tells me I am not her daughter. She says that I just want her to die. I have been dealing with her trying to get a lawyer to sue me for not allowing her to leave the Assisted Living with my dad who has Alzheimer's. I explain that they cannot go by themselves because it is not safe so lately she has been trying to get me to take her.

Last week, an envelope arrived from the Clerk of Court addressed to her about guardianship. She wants me removed as guardian for both of them. Something she said in a one of her rants on Tuesday night made me wonder how she knew certain things. Yesterday, I called the court myself to be certain that I was doing everything I needed to do for her as guardian. As soon as I said my name, the secretary said, "Yes, I know who you are." I was stunned and said, "Uh!" and hesitated. Secretary said, "Yes, we have gotten daily phone calls and letters from HER." Then, she says, "I will tell you like we told her, we will not give advice. You will need to get a lawyer." I said, "Well, I have not called for advice. I just want to be certain there is nothing else I should be doing to satisfy the court." I shared that her money was in an account at the Assisted Living so that she could spend the $200 per month that the court allowed when ever she wanted. The secretary interrupted me and said, "You have money in an account at the Assisted Living?" Yes, I said. Mom had told them that I refused to allow her to spend any money or buy anything....that I was neglectful and not taking care of their needs. Lewy was so convincing that I think they believed her. The secretary says quietly, "We told her she could have Social Services investigate." She was so apologetic at that point. I feel certain Social Services has been called. Thank God I am having her Social Security check sent directly to the Assisted Living and they are placing her extra $66 per month in her personal account to be used as she needs or wants it.

I have a call in to the neurologist and will ask about the Seroquel. I'm wondering if that would help us as well.

A huge thanks to all of you who have taken the time to post on this thread!

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Thu Sep 27, 2012 5:09 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3426
Location: Vermont
Post Re: Belligerence
K - I don't know how you are still sane and dealing with your parents' situation. You must be a very strong and healthy person. All the best to you, Lynn

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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.


Thu Sep 27, 2012 2:52 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: Belligerence
LTCVT wrote:
K - I don't know how you are still sane and dealing with your parents' situation. You must be a very strong and healthy person. All the best to you, Lynn


I really am not sane any more. I try to look at things objectively, but DH's mom died 3 weeks ago and he was in the hospital shortly thereafter for a heart cath. I am reeling just thinking about trying to care for him and my parents at the same time. We are now looking at him retiring this year at age 62. I never thought we would be at that point. He loves his job and is so sad now. He will bounce back emotionally, but I really just need to stop the world for awhile and get off for a few days, but I can't. The time will come and the Lord never gives more than He and I can take together.

Thanks so much for your post and for caring. You have no idea how much that means to me.

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Fri Sep 28, 2012 5:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Belligerence
K-you will be in my prayers! God bless you and keep you sane. I do hope you will get a break soon.

_________________
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 Sep 28, 2012 6:12 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Belligerence
Tuesday night I had my first experience with overnight terror. He started flailing his arms and I reached out to steady him and try to wake him up. He was awake, struggling with me. Ended up pushing me off the bed. Wondered where I'd gone and I told him I fell off the bed. He didn't say anything. I got back up and went to him and he grabbed both my arms and said, "you aren't going to let that dog get back up on me." Then he said, "get out!!!" So I went into the family room and sat in the recliner. I was scared. I had shut the door to the bedroom, hoping to hear if he came out. He did and I didn't hear him. I saw the light from his flashlight before he got in the room. I jumped up and turned on the light. He was contrite and apologetic. He asked if my arms hurt. I told him it was Lewy, not him, but he needed to go back to bed. He said he thought I was going to try and give him another shot to kill him and he wasn't going to let me. (He'd had a pneumonia shot at the doctor this day.) I contacted the doctor at UCLA and she called in a prescription for Seroquel, a very low dose to give him at bedtime. The next night he took the Seroquel (I'm very mindful of the side-effects possible.) He did much better but I was still with "one eye open," so I went in the guest room and slept. The following night was ok, though he was suspicious about the Seroquel, saying it made him shake all over like he wanted to die. The only shaking was from being cold. Last night he started his first night with the CPAP machine. Took his Seroquel about 10:05 p.m., went to bed just after 10:30. Got him all set up. Went to sleep pretty quick. I told him to wake me up when he needed to use the bathroom and I would help him out of the mask. At 2:30 a.m. this morning, I awoke to find him opening the cabinet doors of my nightstand. When I woke he was agitated, all the lights were on all through the house, and he was carrying a 1" diameter, 18" long steel bar. I asked him what he was doing and he said he was checking. "What," I say. He said someone came up to him and clear as a bell said, "John, I think you've been robbed. So, I'm checking everything." I asked him what he was carrying and he said a "steel bar." I said, "Where did you get it?" And he said, "out in the tool box." Soooo, he had walked all over the house, turned on all the lights, went into the garage, retrieved this steel bar, and I didn't wake up until he was standing beside my side of the bed opening my cabinet door. I got up and told him no one was here. We hadn't gotten robbed. He had been dreaming. He still continued his journey looking in closets, etc. He remembered on my nightstand was a jar of coins, he asked if it was still there. He went to our closet to see another jar of coins that was in there. I gave him another Seroquel. I have to ask the doctor about that as it was just over 4 hours since the last one. I finally got him settled. We put the mask back on and I went back to bed. He was pretty restless. After about 40 minutes, I just suggested that we take the mask off. He had already worn it over five hours and there was really no need to wear it all night on the first day. He can take time to get used to it. After I removed the mask, I told him I was going to sleep in the guest room and I did, until 6:15 a.m. And, here I am. He is very high functioning but I'm so worried about this new nighttime behavior. I have no help. Reading the other posts, I'm thinking I need to get some.

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat Sep 29, 2012 10:14 am
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