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 Trazadone/Mirtazapine/Depakote 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: Trazadone/Mirtazapine/Depakote
My dad would have bouts during his last year where he would cry uncontrollably for hours. This would happen for several days, then it would stop, but start up again anywhere from a few days to a week or two later. It was really hard on everyone around him. Sometimes his evening caregivers would be so upset he'd have them crying, then they'd call me if I were at home. It usually had to do with my mother, who died 13 years ago. I felt so bad for him, there was just nothing any of us could do to console him. 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.


Sat Jan 15, 2011 11:40 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Trazadone/Mirtazapine/Depakote
Julianne -

I think it's important to have documented from the DON why she/he is exploring meds.

Often crying jags can be well-controlled by an antidepressant. Anxiety is a harder one to treat.

Not remembering people's names is a memory issue more likely to be Alzheimer's pathology than LBD. How do others react when your mother has memory problems?

Robin


Sun Jan 16, 2011 1:23 am
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Post Re: Trazadone/Mirtazapine/Depakote
Robin,

The DON says she wanted to explore meds because of my mother's anxiety, crying, mood swings and insomnia. She has been on antidepressants for years, currently 150 mg. of Effexor, which replaced Cymbalta. Her depression has been much worse in the last five years and has never been completely controlled by medication. She used to take an anti-anxiety drug (Clonazepam I think) but they took her off of that in the NH. It had helped a lot in controlling her anxiety.

My mother has had word-finding problems for the last 10 years. Initially it was just an occasional thing but in the past two or three years it got a lot worse. In the last year, it has become increasingly severe, and now having a conversation with her is like a guessing game because either she can't recall words she wants and/or forgets midway through a thought what she was trying to say. So forgetting my brother's name was the first time she has forgotten a child's name, but she forgets all kinds of other words. I'm not sure what you are asking as far as how others react. As far as I know, others wait for her to try to remember what she wants to say, and then start guessing if she can't.

She was diagnosed by the neurologists at a major teaching hospital after Abilify was added to her Cymbalta and in a matter of weeks she developed severe Parkinsons symptoms on top of her dementia. She was also hallucinating small children and cats. They did a big workup and ruled out everything else. The attending neurologist called it "probable LBD" only because, he said, of course, her brain had not been autopsied. Her reaction to Abilify was one reason for the LBD diagnosis. They d/c'ed the Abilify, of course, and over time the Parkinsons mobility issues improved, but her dementia remained and has gotten much worse over the past year. She also has rigidity and stiffness and walks with a walker for balance. (She had been on Namenda for two or three years and they added Aricept.)

Julianne


Sun Jan 16, 2011 11:33 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Trazadone/Mirtazapine/Depakote
Julianne -

I understand this is what the DON says but can the DON put this in writing? Especially since you haven't seen these behaviors.

Why not put her back on the Klonopin (clonazepam)?

Abilify can give anyone parkinsonism symptoms...even someone without LBD. It's anti-dopaminergic. (I assume that this is why neuroleptic sensitivity is not a diagnostic "requirement" for LBD.)

Fewer than 25% of cases diagnosed as LBD during life end up as LBD upon brain autopsy.

Robin


Sun Jan 16, 2011 12:36 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Trazadone/Mirtazapine/Depakote
Hi Robin,

I expect the DON would give me something in writing if I asked her, but I'm not following what that would accomplish. Sorry to be missing the point, so please enlighten me if you wouldn't mind.

The clonazepam was d/c'ed on her SNF admission because it supposedly makes people drowsy and at risk of falling, and the SNF objected to it. Her doc has recently written an order for Ativan for aggitation and anxiety but the DON refuses to let it be administered--same objections. I have informed the doc but nothing has been done about it. I try to pick my battles because there are no realistic alternatives for my mother's placement, and so I haven't directly challenged the DON on this. Seems to me that it should be the doc's job to see that her orders are followed.

Thanks for the clarification about Abilify. I wasn't aware of that. The neurologist made a big point about her reaction to it supporting the LBD diagnosis (along with everything else having been ruled out).

About ten years ago, my mother had an episode after surgery that was called anesthesia dementia at the time, and during that episode she was constantly trying to get out of bed on the night of the surgery until she was given Haldol, and that really threw her for a loop. I have often wondered if her intolerance of the anesthesia was due to her LBD (undiagnosed then), and since then I have learned that if she did have LBD, she should not have received Haldol, either. (I objected to the Haldol and it was not administered again.) Sorry for all the detail but I thought it might be helpful in the context of whether she actually has LBD.

As a practical matter, is it crucial to know whether it is Alzheimers, LBD, or both, so long as the medication precautions for LBD are observed? I mean, she is now seriously declining no matter what kind of dementia it is, so I don't know what would change. Her need for care in the SNF would remain the same. I am asking because I would like to know whether to seek a second opinion, which would not be easy because we live in a rural area without any major medical centers close by.

Thanks for all your help,

Julianne


Sun Jan 16, 2011 1:35 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Trazadone/Mirtazapine/Depakote
robin wrote:
Fewer than 25% of cases diagnosed as LBD during life end up as LBD upon brain autopsy. Robin
That is very interesting, Robin. What is the source -- I'd like to read it. What percentage of cases diagnosed as LBD get autopsied, do you know?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 16, 2011 1:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Trazadone/Mirtazapine/Depakote
JeanneG -

The 25% figure comes from all of the brain donation cases I've been involved in locally and nationally.

Medical journal data -- reporting 12% accuracy of mixed DLB/AD, and 32% accuracy of "pure DLB" -- is here:
viewtopic.php?f=14&t=1844

Robin


Sun Jan 16, 2011 6:29 pm
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Location: SF Bay Area (Northern CA)
Post Re: Trazadone/Mirtazapine/Depakote
Julianne -

I'm very worried that this DON exercises way too much power. That's why I suggest the written documentation. And, if you haven't seen the symptoms for yourself, I think that's more reason to put it all in writing.

Neuroleptic sensitivity (to Haldol, Abilify, etc) is a "supporting" criteria for LBD.

Anesthesia-caused delirium can happen in anyone but it's more prone to happen in the elderly.

You've got it exactly right: as long as you take precautions with regard to meds, then it doesn't matter if she has AD, LBD, or whatever.

Robin


Sun Jan 16, 2011 6:35 pm
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Post Re: Trazadone/Mirtazapine/Depakote
Robin, thanks so much for your insights and information. They are so helpful!

I agree with you about the DON. This is not the first incident when I have felt she wielded too much power. Based on your comments and the concerns I already had (layperson that I am), I e-mailed the "consulting pharmacist's" recommendations to my mother's doctor and let her know what is going on. She is a very pro-active doctor and she has already set them straight at the SNF on other issues, so I think she will know what to do. And of course any medication changes would have to be written by her. (As health care agent, I am also informed of any changes.)

Thanks again,

Julianne


Sun Jan 16, 2011 7:19 pm
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Location: Minnesota
Post Re: Trazadone/Mirtazapine/Depakote
Robin, thanks for the reference. I'll comment on it there.

Julianne, in addition to the medical implications for establishing a care plan, I think an early and correct "probable" diagnosis is very helpful to the caregivers in the early stages. For example, it was very helpful to be aware of the fluctuations normal to LBD. I learned not to panic at slight declines, but to wait and see if they were temporary (which so far they've all been for Coy). It was good to understand that the timing of the hallucinations, paranoia, etc. is different in LBD than in AD. I tried attending caregiver metings for AD and felt like they were talking about a far diferent experience than mine. I was extremely grateful to find an LBD caregivers group -- these were people who had experiences I could relate to.

But I imagine that the more the dementia progresses the less important the distinctions are to caregivers. We are not there yet, but from what I hear and read from others, that seems to make sense. As long as you are cautious about drugs, treating the symptoms of the later stages must be similar no matter what the base cause is.

Robin, I'm glad to read your comment about "way too much power." This situation is appalling to me. I hate to think that this is standard in SNFs. I know that the time may come when I can't keep Coy at home, but the horror stories I keep hearing and reading have me very worried about that.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 16, 2011 7:35 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Trazadone/Mirtazapine/Depakote
Julianne,
Robin brings up some very valid concerns in regards to SNF having the power, I work with many on the helpline and it amazes me the things I hear in reference to this very subject, there are many horror stories out there, some good too but sadly I think the bad outweigh the good and advocating for our LO's is so important ! We often say journal every day even more so in a facility.

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Irene Selak


Sun Jan 16, 2011 8:02 pm
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Post Re: Trazadone/Mirtazapine/Depakote
Irene and Jeanne,

The issues with the SNF are complex. We are in a rural area, and this SNF is the best one around. Although I wouldn't compromise my mother's care for the convenience of having her close by, it is so helpful to be only a few miles from her.

That said, I have been detecting nuances of "we know what's best" for some time now, and they make me uneasy. I have been counteracting these nuances by appearing often, calling often, involving the doctor (who knows the score over there) and being vocal at the quarterly care conferences--all in a polite if not deferential manner. (Advocating comes naturally to me, so if anything I must restrain myself!) And I remind myself that the staff is overwhelmingly kind and concerned about the patients, so I pick my battles.

Thanks,

Julianne


Sun Jan 16, 2011 8:14 pm
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Location: Minnesota
Post Re: Trazadone/Mirtazapine/Depakote
Having your mother near by is part of her care, Julianne, and I wouldn't discount that as a valid part of the selection process. If this center is one of the best in the area I can fully understand why you want to work within the system and improve her situation where she is.

You have an opportunity to be a role model to others who are or will be struggling with similar issues. Please keep us informed of your progress -- what you do, how it worked, whether you would do it differently if you could do it over. We can all benefit from your Lessons Learned. (As I am also benefiting from other caregivers who have posted their stories.)

Our loved ones are residents and patients. But to hear some of the horror stories you would think that they are prisoners.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 16, 2011 8:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Trazadone/Mirtazapine/Depakote
Julianne, that's the best we can do. So far Derek's SNF has done everything I have asked of them except possibly answer the call light in a more timely manner. I don't even know if he uses it when I'm not there--they do check on him often--but it can be 15-20 minutes and then it's often too late, as today, when he had two incontinent BMs which may not have been had he gotten to the bathroom quicker. I used the sit-to-stand myself to put him on the toilet once today and he didn't have to go, after all, but half an hour later, he went in his pants because the call light wasn't answered quickly and I was unable to get him in there myself. The call light issue is just a matter of not enough staff for the number of patients. I will be advocating for [or against] this situation to our state legislators some day if Providence allows. These girls work hard. And, actually, so do I when I'm there. ;-)

He ate well today and seemed to be feeling better despite the incontinence. I wheeled him into the main dining room this afternoon to listen to Gospel music. I couldn't tell if he enjoyed it but at least he didn't want to leave in the middle, like he did another musical offering last week.

When I think I almost spent thousands on a sit-to-stand for home, it's scary, because the evening CNAs have had to use a Hoyer lift to get him to bed as he is unable to bear any weight. If I ever bring him home [I'd like to, but right now I can't picture it] I'll just get a Hoyer lift. He wouldn't be afraid of it now.

_________________
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.


Sun Jan 16, 2011 8:48 pm
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