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 Agitation 
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Joined: Mon Feb 26, 2007 10:26 pm
Posts: 3
Location: NJ
Post Agitation
Hello, all -- This is my first posting. My father is 72 and is in a later stage of LBD. How late, no one seems to know. Dad has been ill for somewhere between 6 and 8 years, and until last March lived at home, with my mother his principal caregiver. He now lives in an Alzheimer's unit of a nursing facility 10 minutes from my parents' home, and he is declining. He is the only individual in the unit with LBD, and the staff is learning as they go.

My mother visits him every single day, and lately he has had fewer good days, with increasing agitation. By agitation, I mean that Dad becomes restless sitting in a chair and keeps trying to get up over and over again, as though he wants to go somewhere. It takes two people to help him back to a seated position and to try and soothe him, and this can go on for as long as the two people (usually my mother and an aide, but often my mother and sister) can endure. When he was stronger, a few months before, we would try and take a walk with him, and sometimes that would improve his demeanor. Sometimes it would make things worse. Now he is quite unstable on his feet, and although he can walk, it is only when assisted by two people, one on either side.

The only way to get the agitation under control, sadly, is for Dad to be helped back to his bed, until the agitation subsides. However, this means that he is spending more and more time in his bed (hours at a time), a fact that is devastating to us all. He has less and less interaction with others, and relies on my mother's daily visits (and other regular ones from my sister living nearby, plus intermittent ones from the rest of us living quite far away) for stimulation. Dad takes some Atavan already for agitation, but I'm not sure of the dose.

Does anyone have experience with this kind of agitation and is there any kind of medication that one might recommend to help quell the agitation? He seems so completely distressed during these spells, and they are increasing in frequency and duration.

We look forward to any light you can shed. LBD is such a cruel, inhumane disease. Dad was a gregarious, life-loving, independent man with a wonderful ability to connect to all around him.

Margarethe
Long-distance daughter of 72-yr-old father with advanced LBD


Tue Feb 27, 2007 10:47 am
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Dear Margaret,
Welcome to the forums, I am glad you found us and I am sorry that your family is dealing with LBD.
You ask about agitation, it is very common in LBD , I am not sure the drug Ativan is the drug of choice, there are warnings in LBD that it is second choice drug,that it should be used with caution as with all drugs, the drug of choice with least problems is Seroquel(Quetiapine)It has the lowest incidece of EPS (Extrapyramidal symptoms).I wish you and your family well! :)


Tue Feb 27, 2007 11:10 am

Joined: Mon Feb 26, 2007 10:26 pm
Posts: 3
Location: NJ
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Irene:

Thanks for your post. Dad was taken off Seroquel, as he did not tolerate it well. Ativan was introduced at a low dose to help some, and it did, for awhile, but the agitation has increased again.

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Margarethe
Long-distance daughter of 72-yr-old father with advanced LBD


Tue Feb 27, 2007 11:48 am
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Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
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Margarethe,
wow i read your question and sat here in amazment, it sounds exactly like my mother in law JAckie. were you told he was in the later stages?? or are you just guessing since he was dx so long ago. Jackie does this any time she is awake which is getting less and less during the day. we usually just try and get her to sit, it does not work then we put her to bed. it seems to us that is what she wants.
the more I read your question the more exact they are right now. sometimes it take 3 of us to move her. always at least 2 if we can get her to walk(hardly ever anymore). she sleeps most of the day the only time Jackie is away is when we are feeding her. she can't feed herself anymore, does not use the bathroom anymore,
does he have any sleep issues rem sleep disorder??? Jackie will talk for a long time at night. Jackie does not take anything for this I am terrified to givve her anything new for fear of a bad reaction. I just started her on Klonopin for sleep(advice from website). I gave it to her twice and now she sleeps until 5 in the afternoon so I stopped. not sure what I am going to now.
It you could write some things down that your dad does or dosn't do I would be curious if they are alike in other ways as well.
I know I was not any help but good luck.

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Phyllis
taking care of Jackie 74 years old mother -in-law


Tue Feb 27, 2007 2:51 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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If Seroquel wasn't effective or well-tolerated, there are other choices in the family of atypical antipsychotics. We have found Zyprexa *extremely* helpful in completely eliminating the agitation Cal experienced - the difference is dramatic and takes less than 30 minutes to see with the oral form, <10 minutes with the injectable.

There is information on using Zyprexa in LBD in Dr. Boeve's paper at:

http://www.lewybodydementia.org/Boevelink.php

including typical doses and schedules.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Tue Feb 27, 2007 2:51 pm
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Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
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Jackie did not do well on seroquel. I am not asure so late in game I want to start trying all these new meds. it is not so bad that I think she needs to be treated for it. just putting her to bed makes her feel better. I am not sure where she stands in the (stages) of lbd if she is in the later stages just keeping her comfortable I think might be better. I would be interested in other opinions.

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Phyllis
taking care of Jackie 74 years old mother -in-law


Tue Feb 27, 2007 2:58 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Phyllis:

Eeep. Titrating doses can be really difficult. I'm not sure how much your M-I-L is getting, but try a *tiny* amount right at "bedtime" - the smallest one that is marketed in the US is the .125mg orally-dissolving tablet, but doctors *usually* prescribe the .5 mg regular tablet, which might be too much for her. I'd try half of what you're using now, and then half of that if it's still too much, and sorta split the difference. There is a liquid version as well - that might be easier than some tiny fraction of a tablet in terms of getting the precise amount.

It could take her up to a week to "catch up" on missed sleep, too.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Tue Feb 27, 2007 3:19 pm
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Joined: Mon Feb 26, 2007 10:26 pm
Posts: 3
Location: NJ
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Eric and Phyllis:

Thanks for your posts. Since I am somewhat removed from the day-to-day with Dad, I would really have to talk with my mom about some of the information and/or questions you've posted.

I don't know, for example, if Zyprexa has been suggested, although I think not.

Dad needs help with all of his daily living activities. He needs help getting out of bed and everything from that point forward. He can drink from a cup and/or a straw, but needs help otherwise with eating. He tries very hard to speak, but is extremely hard to understand, if at all. He gives us kisses when we come and go, and he still smiles sometimes. He recognizes us, but doesn't necessarily use our names.

As for Dad's sleep, I know he is doing a lot of it -- more and more -- but since I am never with him at night anymore, I don't know the nature of his wakefulness. Mom has a better idea of his daily patterns from the nursing/aide logs and from being there every day.

I will review Dr. Boeve's article. Thanks for that.

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Margarethe
Long-distance daughter of 72-yr-old father with advanced LBD


Tue Feb 27, 2007 8:37 pm
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Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
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Jackie is only taking 1/2 of a .05 mg pill.
Margarethe your Dad and Jackie seem to be at the same point in their stages. Jackie won't give kisses and hardly smiles at all any more. Just thi pass week we stopped expecting her to go to the bathroom when we take her.

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Phyllis
taking care of Jackie 74 years old mother -in-law


Tue Feb 27, 2007 9:06 pm
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Joined: Tue Feb 27, 2007 12:17 pm
Posts: 2
Location: NORTHERN IRELAND
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Hello all, This is my first time on site. My grandmother has just been recently diagnoised with LBD. I find it really hard that we as a family didn't recognise any of the symptoms, my grandfather died with parkinsons disease and we just thought my gran was seeking attention when her mobility began to deteriorate. She was living in an independant sheltered accomodation for the elderly and had a few falls over the past 6 yrs them she developed a tremour which we just put down to nerves. but since christmas she has gotten much worse and began to get forgetful which we put down to her age. In January her Gp daignoised PD and we all felt extremely guilty as we should have noticed the igns and symptoms, she was commenced on madopar 50mg asap. however since she began the meds her condition became worse she had terrible mood swings and feared been alone. it was then the scheme manager suggested that she was no longer suitable to be living independantly. so we brougth her out to the family bungalow, whcih we fully adapted for her and got in the OT to do assessments of her mobility got the proper hospital electric beds everything she would need to make her comfortabel. this was not enough though - granny began to get very demanding wanting in and out of bed , on and off the toilet got very weepy then eventually the hallucinastions began. we did not know what we were dealing wiith and this was heartbreaking to watch. I had recently had a tumour removed and was told it had earlyt stage cancer I am only 24yrs old and i had all this to deal with with the pressure of getting married later this year i really didn't want the heartache of my granny telling me i didn't care about her and that she wanted to die. i just cant cope. my family rely alot on me because i have nursing background but i am hurting just as much. When i returned to work at the start of feb gran got worse, her gp admitted her to hospital where to this present moment she remains. Her Consultant then diagnoised the lewy body dementia and i found this site and read all the classic signs and symptoms - we had never heard of the before and wanted to know what it was. To my shock and horror my granny has not just a few of the symptoms but all yet no-one can tell us what stage she ia at. Im geting married in september and am the first grandchild to get married and this is hurting me so much i just want her there so badly. Her aggitation has got progressivly worse along with the hallucinations, my gran thinks the police are always coming to get her and she has even tried to set fire to her curtains so the fire services will come and give her the attention she crave.
i am beside mysefl with worry and am exhausting meself visiting up to 3times a day as i work in the hospital ground, i want to give myself time to relax but i am afraid that if i stay away for even 1 day she will forget me or turn nasty as she often does now.


Tue Mar 06, 2007 8:39 am
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Hi Anne Marie,
Welcome to our little corner of the world the LBD forums, Sorry you are dealing with this horrible illness, you are so young and to have such responsibility on your shoulders is too much to handle,
I understand your shock when researching the disease to find your GrandMother has many of the signs I think it has been like that for many of us, we just didn't realize it and for most here many never heard of LBD, let alone how to deal with it.
You say since she started her meds her condition has been worse, that tells me to look for side effects which I have done and this is what I have found out:
Avoid if:
Depression
Psychological disorder is present
Side effects:
Abnormal involuntary jerking movements of the body
mental changes
depression
mania
Hallucinations

These are the area's I would be looking at.
You say you brought her home to be at the family bungalow, what you didn't say is she with you or other family members, who is caring for her when you are at work, am I misunderstanding this ?Please remember this illness is taking over your Grandmother and the things she says are more the illness than the person you know, I am sure she has no control over any of this and I am sure she is scared, I can't even imagine what it must be like having illness of this type.
Hang in there I am sure you will get many good suggestions here, I wish you well!


Tue Mar 06, 2007 5:13 pm

Joined: Tue Feb 27, 2007 12:17 pm
Posts: 2
Location: NORTHERN IRELAND
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sorry. we brought my granny home to care for her on a rota basis between the whole family. those who do not work are there all day and then myself and me mother, father and aunt be there at night. we have just been told by the hospital yesterday that we will never be able to take her home again, she understood this and cried uncontrollably last night, i am so distressed its breaking my heart, she won't be able to attend my wedding in september - am i being selfish? She has lost so much weihgt too as her swallow reflex isn't great and she has been put on a puree diet and will not eat it.


Wed Mar 07, 2007 7:40 am
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Joined: Wed Feb 21, 2007 11:39 am
Posts: 87
Location: Lucca, Italy
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AnnMarie, I have been reading about your grandmother and feeling so sorry for the both of you. YOu have far too much on your plate now and you need to be less stressed what with your diagnosed cancer, a wedding, etc. I never had a grandparents. My maternal grandparents lived thousands of miles away in a far land and my father's had passed away when he was young. It is the one big thing in my life that I have missed. Consider yourself a lucky young lady to have been able to have a grandmother to love and be loved by. You have been blessed. After your wedding, go to see your grandmother with your album and talk to her about it, but don't torture yourself over her not being with you on that special day. It is your special day and you want it to be happy and I am sure if she could give her opinion she would bless you and tell you not to worry about her. Be strong, Irene Martinelli

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Irene in Italy


Wed Mar 07, 2007 12:00 pm
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Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
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Dear Anne Marie,

Your gran is in my prayers tonight - you, too, and all your family. Ireme is right, you are young, stressed and need time to be joyful. As best you can, take time with your young man and for yourself, too.

It would be very helpful to know what medication and what dosages your gran is taking. There can be brand name differences country to country, so if you can also give the generic name, that would be helpful.

I ask about meds because they can truly improve many people's situations. There is no cure for LBD, and it can worsen quickly or slowly.
My mom is 78, diagnosed with Parkinson's 7 years ago and LBD 4 years ago - but probably ill long before that. At one point she was over-medicated which created many behavioral problems, to the point of needing to admit her to a psych unit. Once we found a physician knowledgeable about LBD, her meds were properly managed. She is failing now, and rather rapidly in the last several months, but adjusting the meds helps keep her calm, relaxed and with some life-quality. Without them, she would be screaming, hallucinating, confused and miserable, with no quality of life. Even in the end stages of LBD, medications can be useful.

Is your gran being followed by a doctor who understands LBD? You likely know it is not the same as other dementias, such as Alzheimer's Disease, and the treatments are also different. In fact, some of the meds used for other dementias are harmful in LBD.

Please write when you can. All of us are on a journey with our loved ones, and it is good we have each other to share with.

Peace,

Lin


Fri Mar 09, 2007 12:48 am
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Joined: Mon May 07, 2007 12:21 pm
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Post Agitation seems a "normal" affect of LBD..........
This is my first post as well. What a long story it is to tell. I will try to compress it. My parents (Dad and Step-Mother) live in Florida. They lived in their own home in a gated community for seniors up until my step-Mother, Helen (Mother from now on in these postings). My Dad is 88. He is very hard of hearing! He has some mobility problems (mostly from inner ear problems). Helen is in her mid to late 70's. She has ALWAYS been a health nut! I can remember her taking my young kids (at the time) to a shopping mall to speed walk the whole thing. She took vitamins, ate only healthy food etc. She was my Dad's rock! In late 2006 she had to be moved to the Alzheimer's unit of the onsite Nursing Home. Dad could not do everything for himself so he too moved to the onsite Assisted Living Home. This was all one building but, different wards. Even though my Dad is elderly, he still has all his mental faculties. Daily the two of them would have their meals together and spend a lot of quality (to them) time together. This seemed to be a perfect solution for both of their health and emotional needs. Helen wanders at night. I am thinking they in some way restrained her to keep her in bed or in her room. Often times during their visit Helen told Dad that she just wanted to go back home (to their house). She did not understand why she had to stay there. The entire ward was then quarantined due to a flu outbreak. This meant that Dad and Helen could no longer see each other, as long as the quarantine lasted. Helen's daughter had lived in Georgia and once Helen became ill she wanted to be closer to her. This (at the time) was comforting to me, someone would be able to oversee both of their care. My brother lives in Washington State and I in West Virginia. As soon as the quarantine was lifted Maria (Helen's daughter) got Power of Attorney or Guardianship (not sure which) of Helen. She had her MOVED two hours south of where she and Dad had been living. At the outbreak of Helen's illness my Dad became very depressed and went into total denial. He kept saying that better days were ahead. I corrected him and told him in actuality things would most likely go downhill, but, there may been some good days. The best thing for him was to see Helen several times a day. These visits also seemed to help her. It angered me that for Maria's convenience, she would move her Mother closer to her. Maria moved there from Georgia and could have moved closer to Dad and Helen. Dad and Helen have been married nearly 20 yrs. (second marriage for both). My dad does not drive so he can only communicate with Helen by phone. This is difficult in itself with Dad's hearing loss and from what he says Helen keeps her chin on her chest. She is VERY soft spoken. About a week ago Dad found a friend that would drive him to Helen. He was allowed an overnight stay. He says Helen was very receptive to him and it was a good visit. She gets very upset when Dad has to leave. He has been there to see her twice. I know that dad has said that he may want to move closer to where she is. He is debating the issue as he has just finished the move from the house to where he is now. It was a hard (physically) move for him. It seems that he has spoken with Helen about moving. I am not sure if he means her to him or him to her. I got a rather upsetting email from him yesterday. He spoke of being threatened by Maria. It was only after reading the email from Maria (I asked him to forward it to me) that I learned that Helen has been diagnosed with Lewy Body Dementia. Her threats (as you will read) are about Dad agitating Helen with his calls and visits. In researching Lewy Body for hours last night and finding this forum, I see that agitation is "normal" with this disease. For those of you that have knowledge please enlighten me. To me separating spouses unnecessarily, is evil !! To further threaten one spouse with a TOTAL no contact order is much worse. One other thing, if Helen is getting agitated, could this agitation be harmful to her physical health? Could it be that the medical staff would prefer not to deal with her agitation? I guess, in other words, to me it is normal that Helen would be upset when Dad leaves. That when he talks of a move possibly she feels that is interfering with her otherwise "safe place", she lives in emotionally. And even more so would be Maria not wanting him to successfully be able to move her so that Maria would have to be the one to travel to see her Mother.
Her email to my Dad:
----------------------------------------------------
The executive director of ********(name of place she is in--edited for her privacy) has brought to our attention that your phone calls and last visit with mom have greatly upset her. We don't know why you would pester her (mom's words) about moving. As you must know, she has alzheimers and Lewy body dementia; she cannot make decisions for herself and her well-being. You must cease discussing a move with her. If you do not do so, we will be forced to take action that prohibits any communication with her in the future.
-----------------------------------------------------
I do not know what RX Helen is on but, after reading EricSEA post I see that Zyprexa may help.
I am so sorry this was so long. I just need to be enlightened here before I open my mouth and stick my foot in it!!

Thanks,
~Dee~


Mon May 07, 2007 1:40 pm
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