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 advice for a new member 
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post advice for a new member
Hi everyone. I'm so glad that I have found you!! I am a new member.
The hospice doctor wants to put my mom on Haldol (low dose) for delusions, hallucinations, and agitation. From what I've read here, that is not a good drug for Lewy body patients. (I have read Boeve's continuum and many, many posts!) I'm worried about the effect of anti-psychotics on the parkinsonism that goes with lbd.

Does anyone have experience with a different drug for delusions and/or extreme agitation. Or can someone tell me first hand what adverse effects haldol can have on a lbd patient.

She has just recently started seroquel .25 mg (1 in morn, 2 at night) with ativan as needed for agitation. We need to do something asap. Her delusions and hallucinations are increasingly more difficult for her to handle and for us to know what to say or do. She is paranoid much of the time and thinks that we are against her. I read someone's post tonight and that is our situation. "The divert and distract strategy to prevent escalation is not working, she becomes angry if we do that or if we do not respond how she thinks we should."
It seems that nothing is easing her distress. I appreciate any help that members can offer!
Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Wed Dec 15, 2010 11:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: advice for a new member
Debbie, first of all, welcome! Sorry you have to be here! Haldol and some other anti-psychotics can cause NMS [neuroleptic malignant syndrome] in persons with LBD or PD. Some symptoms are extreme rigidity and fever and it can be fatal. My husband developed it after taking Risperdal [risperidone] for about a month but recovered to baseline after discontinuing it. He was in a nursing home at the time and no one but me knew anything about it. I had just gotten lucky doing some online research where I found two British medical journal articles about risperidone issues with PD and LBD. I immediately called and told the doctor to please discontinue it immediately. My husband probably would have died within days. Haldol is even more dangerous than Risperdal. Most doctors are just not familiar enough with this disease to know the facts, I'm afraid.

There are some LBD Fact sheets you can print off [see the information section] that warn of these dangers. Take one to every doctor and dentist visit with your LO. And get some of the little LBD medical alert cards, too. The print is small but at least they can carry it their wallet or pocket.

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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.


Wed Dec 15, 2010 11:53 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: advice for a new member
Welcome aboard, Debbie. I don't write with any authority except that my husband has been taking Seroquel 100 mg before bed time since August of 2009. It allows us both to sleep during the nights.

We also had a lot of misinformation given to us in the beginning. You are in the right place. This is where I go for advice.

Again, welcome....

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Dec 16, 2010 12:01 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: advice for a new member
I might add, as I forgot to in my above post, that my husband also takes Seroquel with good results.

_________________
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.


Thu Dec 16, 2010 12:25 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: advice for a new member
"Lewy body dementia" is a type of "Lewy body disease." No one with a "Lewy body disease" should be given Haldol.

Who is the prescribing MD for hospice? If it's the neurologist (and it hopefully is), then let the neurologist do the decision-making on medications.

Seroquel and Clozaril are the medications of choice for delusions and hallucinations. But not everyone can tolerate them. In some, Risperdal is the best choice.

You've probably read mixed things here about Ativan. It can cause paradoxic anxiety. Again, some can tolerate this medication. Some cannot.


Thu Dec 16, 2010 1:21 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: advice for a new member
Welcome Debby, As the others have said, it's a rocky road and there's no one answer for everyone. Ativan didn't work for my husband, along with a few others.

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Dec 16, 2010 5:59 am
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: advice for a new member
Thanks everyone for replies.

I was able to talk with the neurologist before hospice gave mom a dose of haldol. I'm so grateful that I read of the possible problems with haldol on this website before that became an issue. What we have learned here has been invaluable, and knowing that you all are there is such a comfort!!

The neuro decided to increase seroquel to 2 at night and 1 in the morning to a total dose of just .75 mg, so we have lots of room for increasing that in the future. Since she seems to have tolerated Ativan, the dr. wants to give her one in the morn and one in the afternoon to keep it in her system. She seems to have calmed down just a bit, but she slept so much yesterday that my sister only gave her one seroquel last night and she was awake until 3:30. So hopefully tonight she will go back to 2 at bedtime and have a better sleep. The situation seems to change daily, and so do the challenges.

Thanks again,
Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Fri Dec 17, 2010 7:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: advice for a new member
Quote:
The situation seems to change daily, and so do the challenges.
That's for sure with Lewy, Debbie! Glad things are looking for now, anyway. :P

_________________
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 Dec 17, 2010 7:13 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: advice for a new member
Debbie, You will see often, that we are adjusting to the "new normal", that can be weekly, daily, sometimes the changes are by the hour. Hope your mom, and anyone else in the house gets a good rest tonight.
Take Care
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Dec 17, 2010 7:27 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: advice for a new member
Hi Debbie, and welcome to the site. So sad that you have to be here. My husband takes Seroquel 3 times a day, for a total of 175 mg daily. Also takes Ativan if needed. It does seem to help him. Bernie


Fri Dec 17, 2010 8:17 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: advice for a new member
Gerry wrote:
... the "new normal", that can be weekly, daily, sometimes the changes are by the hour.


As you probably saw by my other post, Dale made a complete 'about face' this afternoon and we had a great time going to do some errands.

We've got to take advantage of those moments, don't we?

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Dec 17, 2010 8:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: advice for a new member
Welcome Deb - like everyone else here knows life is full of lots of challenges and I hope you will find this site supportive and helpful. 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 Dec 17, 2010 9:46 pm
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Re: advice for a new member
Welcome Deb,

My hubby takes 100mg of seroquel at bedtime along with 0.5mg of klonopin. He couldn't tolerate ativan.

It sure is a challenge to find the right mix.

Karen


Fri Dec 17, 2010 11:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: advice for a new member
Debbie,
I'm glad to hear your neurologist is on top of things, and that you are wise to be utilizing that expertise.
Robin


Sat Dec 18, 2010 1:08 am
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