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 Acting Out/Combatitive behavior 
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Acting Out/Combatitive behavior
Another lewy leap--and, of course, it isn't enough to call 911 but it happens on a weekend when it's difficult to consult with doctors....My husband, Norris, has hallucinations and delusions -- friendly people sitting in chairs, or our house is a train station, Navy base etc. He's never been combatitive. He takes Sinemet/Stalevo for PD and Seroquel for anxiety. Exelon and Namenda made his PD worse and didn't help cognition. Seroquel helps his REM sleep.

For several nights he has been acting out vivid dreams. Last night he seemed somewhat awake, yelling "Help, Help" I patted his arm and told him he was ok, to further awaken him....he slapped me in the face saying "you're robbing me, you're robbing me", finally I got him quieted and he seemed to doze.

If this is a beginning of what some of you are experiencing that I have read on the forum, what medications have you/your doctor's tried? I hate to see him too medicated and non-coherent, but this acting out could get dangerous. He is tired this a.m., but remembers the incident, remembers slapping me but had no interest in talking, had breakfast, then he felt quezzy so is dozing in his chair. I will call the Doctor Monday, and even though medications work differently for "lewys" wondered what worked for your LO's. Carol :cry:

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Sat Sep 22, 2012 8:29 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Acting Out/Combatitive behavior
This is one aspect of LBD that I have been fearing. I'm sorry you are going through this, it must be so hard. I will be watching this thread to see what the others have to say. My thoughts and prayers go out to you. I wish I could help right now.
God bless,
Terri

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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 22, 2012 9:21 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Acting Out/Combatitive behavior
carol...

i'm so sorry you and your hubby are going thru this....

my normally gentle quiet hubby, has these outbursts too.. so far i havent been slapped.... looks, anger and get your in face type of behavior, has been scary enough...

i've been advised to think ahead of time, a place where i can go and be safe in the house.. and call for help, if need be.. till the episode passes....

when these happen, its not my hubby anymore... a new violent angry person, has taken his place... we live on a couple acres, with no close neighbors.. and i do get frightened, especially if it goes on too long.. so far i have been able to redirect or talk him down a bit.. but i do worry about his safety (and mine.). hubby is on serequel and for him that has helped so far!!

most folks talk about quiet hallucinations or delusions.. kids playing, xtra people for dinner, and we have had those.. but mainly his are the violent. since he has ptsd, the docs feel a lot of that comes in to play with him and his hallucinations.. but who knows.??.

please stay safe.. let us know what the doc says and best of luck to you and him..
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Sep 22, 2012 11:01 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Acting Out/Combatitive behavior
Hi....I think my husbands episodes of acting out (so far) are scary, combatitive dreams and he wakes up, but isn't truly awake and thinks I am part of the dream. It seems to take him longer to wake up, even when he naps during the day. He has been mobile, walks up to 1/2 mile or more a day. I have to help him dress because he can't bend over because of his Parkinsons. But lately he has been a little shakey, his Parkinsons shuffle is getting worse, and in the morning he has been using his rollator walker when he first gets up, which he hadn't used before (we got it just in case). I dread it when he can't walk at all (we also got a transfer wheel chair just in case).

We will see what the Doctor says, I imagine she will increase his Seroquel (he takes 100mg per day spread out in 3 doses).

Take care...Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Sat Sep 22, 2012 11:28 am
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Acting Out/Combatitive behavior
For those of you who have been dealing with the combative behavior, my heart goes out to you. I had one this summer on a trip when my husband insisted I was 100 miles off course. He wasn't physically combative but it was still scary since we were in such a closed in atmosphere...the car. The next day he said he understood I hadn't been offcourse the day before but said he just couldn't get it in his head the day before. Mostly he is sweet and loving. I dread the combative stage if it happens because I have a fear of confrontation and have dealt with abuse in a past marriage. Prayers for all of us every night.

Susieg


Sat Sep 22, 2012 8:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Acting Out/Combatitive behavior
Susie, I don't think every Lewy becomes combative. My husband has been--still is sometimes--combative, insulting and often just cruel--not just to me but to the staff at the SNF. He calls the nurses and aides names, like ,'You fat, ugly cow', etc. :cry: and sometimes hurts them physically when they are trying to help him. As he has become more debilitated, this is less frequent. I know it's part of the disease and is related to the part of the brain affected by it. It's difficult to deal with sometimes but, thankfully, he's not always like that.

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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.


Sat Sep 22, 2012 10:12 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Acting Out/Combatitive behavior
Susie,
Pat's right they don't all become combative, just be ready for it just in case and by that I mean always keep yourself safe first !
It may never happen , I know many thaqt their mates remained seet until the end !

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Irene Selak


Fri Oct 12, 2012 9:53 pm
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Joined: Wed Feb 15, 2012 11:39 am
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Location: Victorville, CA
Post Re: Acting Out/Combatitive behavior
Carol,
My husband had his first episode a couple weeks ago and our doctor prescribed Seroquel, 25 mg. He'd not been taking it before. The way your husband acts is exactly the same as what I experienced. He acts awake, but I don't think he actually is. He remembers the next day and is very contrite. The Seroquel has helped. It may be a coincidence, but I had been painting John's big toenail for a couple days before the first ever episode of nighttime terror. I forgot to do it the next day and he slept fine. I remembered the following day and he woke again in the night and I couldn't get him to orient himself to reality. Then I had a thought. The next day I didn't paint his toenail and he slept fine, the next day I did, and he woke in the night. I brought it to the doctor's attention, suggesting that it could all be a coincidence, but interesting, nonetheless. I haven't painted the anti-fungal on his toe since and he's been sleeping through the night. I've read documents relating to medications for people with LBD and remember one that cautioned against anti-fungal medication but I thought this OTC external med might be ok. I realize it's absorbed into the skin and maybe that's what happened, I don't know. Either way, we're off the anti-fungals.

This is a scary aspect of LBD. I have an appointment with the Alzheimer's and Dementia Support Group in Santa Monica next month. Once in the program, I will have access, by phone, 24/7, so when these things happen, I can call and get direction from an LBD professional. I don't know where you live but perhaps there is a similar organization in your area. This group is through UCLA in Southern California. I live about 70 miles away but having the lifeline will be comforting.

I know this is not just a bump in the road, but another added challenge. I pray that you will find the help and support you need.
Terri

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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 Oct 13, 2012 12:38 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Acting Out/Combatitive behavior
Terri.

How interesting about the anti fungal external medicine. Norris does have some toenail fungus, and last year his Primary Care doctor said to rub mentholatum on his toes, he said it works just as well as the anti fungal cream.....and it has the added benefit of keeping the cuticles soft, so we do it each morning after his shower ....

He hasn't had an episode of sleep/wake or vivid dreams since the one I posted about. I called his Neurologist and she said to try increasing his Seroquel from 50 mg at night to 75 mg.....that was too much, so I dropped it back to the 2 pills (50mg) and he has been fine (as fine as lewy will let him be). He also takes one (25mg) Seroquel at 11a.m. and one at 3 p.m., it seems to help him get ahead of his "sundowning" and demanding to go home, or to the Navy base, or to pack and move....all of which he still mentions but I can didvert him and he is much more agreeable when I tell him I don't want to move, or the Navy base is a 12 hour drive .....

As for a contact with the hospital, we go to the Medical University of South Carolina in Charleston, and I can call his neurologist's assistant during the day, but I will do as you suggested and see what and who to contact for emergencies and off hours.

Our "lewy" advances of late are very soft voice, even whispering alot of the time, forgetting how to sit down in a chair or on the toilet, needing cues how to do it, and his Parkinsons poor balance/shuffle steps increases in the afternoon.....

Take care. Hope you are also taking care of yourself. I can still leave him alone for an hour in the mornings, so will go take a walk on the beach----the sound of the waves is my mental cleansing!

Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Sat Oct 13, 2012 1:06 pm
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Joined: Tue Oct 30, 2012 9:50 pm
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Post Re: Acting Out/Combatitive behavior
My husband was just diagnosed and today he grabbed my hair and wouldn't let go. Thankfully, I had my cell phone in my hand and my neighbor was next door to help. Doctor said she called him some stronger meds but that was four hours ago and pharmacy still doesn't have it. This is the first. He is paralyzed and is upset I won't let him walk. He has a broken leg because he tried it once on his own. I just don't know what to do. Just in the last couple of weeks he has gone down hill fast. Doctor says his life expectancy is 2 years. I haven't slept a full night in over a month. Not sure if I will last that long.
I sympathize with you and wish you well. If you find something that works let me know also. :x
Garys Wife....


Wed Oct 31, 2012 5:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Acting Out/Combatitive behavior
I am so sorry about your husband, and I hope you do whatever you need to so you can sleep and take care of yourself. What will happen if YOU get sick from lack of rest, exhaustion, and ill-health? Can you put him in respite care for a little while? Hugs, 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 Nov 01, 2012 7:51 pm
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Joined: Tue Apr 24, 2012 5:00 pm
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Location: Fayetteville, NC
Post Re: Acting Out/Combatitive behavior
Ted has always been the kindest man, but we also had those outbursts of hitting (mostly chairs, other objects with his cane) and the glares and accusations. I awoke one time to him standing over me asking me what that naked man was doing in my bed. It scared me because I wasn't sure how long Ted had been standing there, but I sternly told him there was noone else in our room and got Ted back in and settled down. We were using Seroquel and clonazapam and that seemed to help. Yes, if the Seroquel dose was too much, Ted would become rubbery, unable to move well at all (not that Lewy was letting him move that great to begin with).

Ted is now in a new nursing home and back on hospice (yes, the other NH doc was wrong in his assessment that Ted was not meeting hospice criteria). He's no longer able to get out of bed, and we can truely barely understand him when he tries to talk, but he has smiled at times and followed conversations. This nursing home (State Vet home) is closer and will even allow us to bring his dog in to visit. So, some blessings inbetween the currrent downturn we've been in. This has been fast also. Even so, the delusions and hallucinations still come around, but because he's bedbound, it's not so bad.

I am only 53, but am also dealing with some health problems obviously related to the stress of what this disease does to a family. Please take one day at a time, one moment at a time. I took myself to the doctor inbetween Ted's switch from the one NH to the hospital and now to the State Vet Home, and in checking me out to be sure I wasn't in danger of a stroke, they found a nodule on my thyroid...go figure...so, more testing yesterday. Meanwhile, I'm also hoping we'll soon be at peace for Ted's journey. I've been told they'll let me know when to call our girls in, that it's not time yet, but we are definitely getting closer.


Fri Nov 02, 2012 5:03 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Acting Out/Combatitive behavior
Jean - I hope your testing doesn't turn up anything bad. You are young and have a lot of years ahead, so it's good you are taking care of yourself. Some of these stress-induced illnesses never go away, the best we can do is manage them. From one who has BTDT, take care, 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.


Fri Nov 02, 2012 8:07 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Acting Out/Combatitive behavior
Jean, you will be in my prayers! Blessings and hugs!

I had some thyroid nodules identified many years ago and a very low dose of thyroid has served to keep them from growing. My last ultrasound showed one had disappeared and the other had shrunk.

_________________
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 Nov 02, 2012 10:50 am
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Acting Out/Combatitive behavior
Hi All:

I, too, am dealing with combative behavior from my husband. About a month ago, he began picking verbal fights with me, which mainly entailed him telling me that he wasn't going to do certain things, like get out of bed or get up from where he was sitting in the living room, to telling me that he wasn't going to help fold laundry. And he keeps telling me these things until I tell him to quit trying to pick a fight with me.

In the past two weeks, however, the verbal fights have escalated to one incident where he punched his feeding tube while I was feeding him to stop me from feeding him, after which he refused all care from me, including changing his Depends.

After that incident, I got him into a geri psych unit at a local hospital, but the psychiatrist wanted to give him Tegretol to get his mood stabilized. After researching that med, I chose not to allow the doctor to give it to him and I brought him home.

Oh foolish me!

Yesterday morning, which was three days after I brought my husband home, Mr. Hyde and his ugly, violent, mood appeared again, refusing his tube feeding, and then proceeding to kick at me, hit me, scratch me, and attempting to destroy furniture and the things on it. I managed to call my sister and shout into the phone for her to come help me. When she came through my door, my husband stopped his bad behavior. After a call to 911, back to the hospital he went, where he is once again awaiting a bed in the geri psych unit. When he gets back into the geri psych unit this time, though, I'll let the doctor do whatever he wants in an attempt to get my husband's moods stabilized. And IF I bring him home again, it will be for Hospice care here, with the goal of eventually letting him go. Otherwise I'm going to lose what few marbles I have left in my head.

My husband is currently on Namenda and Trazodone (to help him sleep). Seroquel was used at a low dose (12.5 mg) when he was in rehab recently, but we discontinued it after four nights because his hallucinations increased and became very worrisome for myself and the staff there.

Right now, I don't know what the right answer is. I am, however, staying away from my husband for a few days, hoping that he'll calm down and not be so combative.

Another behavior he is exhibiting is that if he's "mad" at me or anyone else, he purposely pees in his Depends, rather than get up and go to the bathroom. He is so much like a two-year-old child right now, but at 6'2" and 247 lbs, he's so hard to handle.

I know it's the disease that is causing him to be this way, but how it is affecting him and our relationship is pushing every insecure button I have about love. Thankfully I have a great family who is telling me to save myself and not to allow myself to go down with the "ship;" but, as you all know, it's very hard.

This is a very scary roller coaster ride for me, and since I don't like roller coasters, I want off; yet, feel duty and marriage vow bound to hang in there until the ride ends. God help me.

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Beth


Sun Nov 04, 2012 2:47 pm
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