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Dear ,

You and your sweet Mom are in my prayers. I think that after your Mom gets off

the Detrol, the hallucinations should start to disappear. And, yes, I do want

her arm to heal so that she can be off the pain meds too.

Please feel free to write to me offline and perhaps I can even call you because

I have unlimited long distance.

Take care,

Love and prayers,

Joan

>

> Thank you for reposting this. I always like to keep in mind

> about these drugs. For instance, just the other day, I asked

> my mother's night nurse what was in her " pain patch " , well,

> the pharmacist was sitting there and when he asked Mom's

> med's and Detrol popped up, he said, that is not a good one

> for her hallucinations and it isn't going to help her with

> incontinence anyway, she needs off of it. He is suppose

> to tell her dr. by notes to take her off that. I will ask again

> today if the dr. has taken her off of Detrol yet. This home

> is not on the ball it seems about getting things done. The old

> stinky nursing home, I had great access to the dr., nurses,

> pharmacists, the pyschatrist, they were all gathered up in

> the one nurses station in the middle of the place and I was

> always up there asking many questions about her and her

> med's and they were all eager to take the time to talk to

> me. Well, the environment there was unreal!! 99% of the

> people were full blown alzheimers, or mentally ill people that

> would slap, hit others, etc., it smelled before you walked

> in the front door, the odor knocked you over! gross! Her room

> was so tiny I had little room to visit in there with her, she

> had a roommate, but she was mentally ill. I got her moved

> in June to a nice, clean home, but the nurse, is constantly

> busy, she rushes through telling me anything, I don't feel

> I have a good report with her like over there at that other

> place, and I have not even met my Mom's dr. in the 7 months

> she has lived there! My Mom saw a pyschologist and pyschatrist

> when she first moved in for a few months. She knew the

> day, the time, the president, etc., all the questions they ask

> patients if they question they have dementia, and she knew

> everything correctly. They did know of her hallucinations,

> but guess they thought she was good so stopped seeing her. Now

> she has broken her arm and gone downhill non stop hallucinating,

> sleeping all the time, in pain all the time, barely communicating

> except when she tells of her horrible dreams, they are just

> letting her try and heal I suppose. Which is what I am doing,

> just taking it easy with her, and praying when her arm heals

> the pain med, Ultram can be dropped and hopefully when they

> drop the Detrol the hallucinations can stop. I pray she isn't in

> her last stages of LBD, but she is just not doing well. I try to

> convince myself that she will live longer and be OK once her arm

> heals. But everyday seeing her in this state of mind, not eating

> good, in pain, and hallucinating like there is no tomorrow, I'm

> just wondering if she is going to make it past the broken arm

> stage. Its confusing me, frustrating me, and I don't know whether

> to believe this is getting close to the end or see many more happy

> days ahead with her.

>

> Love and PRAYERS!

>

>

>

> In a message dated 1/27/2011 6:06:43 A.M. Central Standard Time,

> octoryrose@... writes:

>

>

>

>

> I'm glad you found us.

>

> First & foremost:

>

> NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine),

> NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, Enablex)

>

> EXTREME CAUTION with MOST BENZODIAZEPINES (e.g. Ativan)

> EXTREME CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone,

> Zyprexa) - but some are used w/ success (e.g. Seroquel, Clozaril) " Start Low,

Go

> Slow "

>

> Take a moment to post a possible med. before trying - this board has an

> archives section w/ tons & tons of warnings about meds that don't work for

> those w/ LBD - they are extremely sensitive to meds!

>

> Read here:

> Risperdal & Haldol

> Message w/ collection of articles re: above

> _http://health.groups.yahoo.com/group/LBDcaregivers/message/70932_

> (http://health.groups.yahoo.com/group/LBDcaregivers/message/70932)

>

> 2006, July 2 -- ADVERSE EFFECTS OF ANTIPSYCHOTICS ARE 'TIP OF THE ICEBERG'

> Letter to the Editor - by Louis R. Caplan, MD

> _http://health.groups.yahoo.com/group/LBDcaregivers/message/73781_

> (http://health.groups.yahoo.com/group/LBDcaregivers/message/73781)

>

> Dementia With Lewy Bodies: A Review Of Clinical

> Benzodiazepines (e.g. Ativan) may negatively affect cognition and produce

> sedation, paradoxic agitation and increased risk of falls in the elderly

> _http://tinyurl.com/2n54qj_ (http://tinyurl.com/2n54qj)

>

> Why such strong feelings about benzos?

> Message by , also includes info re: an exception to the no benzo

> warning, Klonopin, that has been used with success for RBD (REM Behavior

> Disorder) by Dr. Boeve.

> _http://health.groups.yahoo.com/group/LBDcaregivers/message/61849_

> (http://health.groups.yahoo.com/group/LBDcaregivers/message/61849)

>

> A Lewy Body patient

> Lewy Body symptoms make my life one of constant frustration.

> by Shirley Lay

> _http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730_

> (http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730)

>

> Evaluating Meds

> Advice from a PharmaD via Lin

> _http://health.groups.yahoo.com/group/LBDcaregivers/message/75551_

> (http://health.groups.yahoo.com/group/LBDcaregivers/message/75551)

>

> Legal Stuff - get it done NOW

> _http://health.groups.yahoo.com/group/LBDcaregivers/files/_

> (http://health.groups.yahoo.com/group/LBDcaregivers/files/)

> scroll down to this document:

> The Business of Dementia.doc

> The 'legal' things you need to know about

>

> Top links to important LBD resources (IMHO)

>

> A Must Read by Dr. Bradley Boeve

> A Comprehensive Approach to Treatment can Significantly Improve the

> Quality of Life of Patients with the Lewy body dementias.

> _http://tinyurl.com/c2m5l6_ (http://tinyurl.com/c2m5l6)

>

> Diagnostic Review & Medicine Management

> by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

> and treating DLB/LBD. Includes recommended dosages.

> _http://tinyurl.com/bhppca_ (http://tinyurl.com/bhppca)

>

> An Introduction to Lewy Body Dementia - for newly diagnosed patients and

> their family

> _http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255_

> (http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255)

>

> *** 2006, September 08 -- Lewy body dementia

> From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the most

> detailed, accurate information I've ever read about LBD. I think it should

> be sent to all new caregivers AND doctors who aren't clear. Thoughts

> everyone? " Keli says, " Definately yes!!! This is very informative yet not

> overwhelming. It can easily be shared with others. I intend to have my

husband and

> children read it, and hopefully my moms dr's as well. Very good

> information. "

> _http://www.cnn.com/HEALTH/library/lewy-body-dementia/DS00795.html?iref=news

> search_

>

(http://www.cnn.com/HEALTH/library/lewy-body-dementia/DS00795.html?iref=newssear\

ch)

>

> LBD Brochure

> (to print use legal size paper)

> _http://www.lbda.org/feature/1925/facts-about-lbd-brochure.htm_

> (http://www.lbda.org/feature/1925/facts-about-lbd-brochure.htm)

>

> " Difficulties in Diagnosing Lewy Body Dementia "

> by T. MD

> _http://www.youtube.com/LBDAtv_ (http://www.youtube.com/LBDAtv)

>

> Live Chat Event with Gomperts, MD

> Dr. Gomperts answered your questions in this Q & A session from March 2007

> _http://www.lbda.org/category/3515/chat-transcripts.htm_

> (http://www.lbda.org/category/3515/chat-transcripts.htm)

>

> If your LO hasn't been diagnosed yet, make sure they get a FDG-PET

> assessment.

> _http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627_

> (http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627)

>

> And a summary of what's on this board:

> Main board:

> _http://groups.yahoo.com/group/LBDcaregivers/_

> (http://groups.yahoo.com/group/LBDcaregivers/)

> (Read your emails via the board vs. your `in box'. And get into all

> the different sections that are available on the website. Search

> archived messages here.)

>

> Links Section:

> _http://health.groups.yahoo.com/group/LBDcaregivers/links_

> (http://health.groups.yahoo.com/group/LBDcaregivers/links)

> (Tons of links that is continuously a `work in progress' †" all these

> links are useful to the caregiver. A variety of categories neatly

> organized into folders †" what topic are you interested in? Find the

> folder and within it find numerous links to other websites for

> additional information.)

>

> Files Section:

> _http://health.groups.yahoo.com/group/LBDcaregivers/files/_

> (http://health.groups.yahoo.com/group/LBDcaregivers/files/)

> (Read other caregiver's stories, read about the good & bad drugs

> here, print a " companion card " from here (cards to hand out in public

> areas about your LO's behavior), find the locations of other

> caregivers who are possibility living in your immediate area, FAQ

> document, LBD Phases by LBD Caring Spouses, etc.)

>

> Database Section:

> _http://health.groups.yahoo.com/group/LBDcaregivers/database_

> (http://health.groups.yahoo.com/group/LBDcaregivers/database)

> (Suggested reading, learn the common denominators about our loved

> ones, medical referrals, nursing home referrals, bibliography of LBD

> in literature and film, etc.)

>

> Photos Section:

> _http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos_

> (http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos)

> (Put a face to a name.)

>

> Polls Section:

> _http://health.groups.yahoo.com/group/LBDcaregivers/polls_

> (http://health.groups.yahoo.com/group/LBDcaregivers/polls)

> (Several polls running re: LBD)

>

> ; loving daughter of Maureen of Boston, MA; dx'd with LBD in

> 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from

> Risperidone; Mom fell into the 50% category of those who could not handle

> antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my

Guardian

> Angel on Sept. 30th, 2006.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm glad you found us.

First & foremost:

NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine),

NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, Enablex)

EXTREME CAUTION with MOST BENZODIAZEPINES (e.g. Ativan)

EXTREME CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone, Zyprexa) -

but some are used w/ success (e.g. Seroquel, Clozaril) " Start Low, Go Slow "

Take a moment to post a possible med. before trying - this board has an archives

section w/ tons & tons of warnings about meds that don't work for those w/ LBD -

they are extremely sensitive to meds!

Read here:

Risperdal & Haldol

Message w/ collection of articles re: above

http://health.groups.yahoo.com/group/LBDcaregivers/message/70932

2006, July 2 -- ADVERSE EFFECTS OF ANTIPSYCHOTICS ARE 'TIP OF THE ICEBERG'

Letter to the Editor - by Louis R. Caplan, MD

http://health.groups.yahoo.com/group/LBDcaregivers/message/73781

Dementia With Lewy Bodies: A Review Of Clinical

Benzodiazepines (e.g. Ativan) may negatively affect cognition and produce

sedation, paradoxic agitation and increased risk of falls in the elderly

http://tinyurl.com/2n54qj

Why such strong feelings about benzos?

Message by , also includes info re: an exception to the no benzo warning,

Klonopin, that has been used with success for RBD (REM Behavior Disorder) by Dr.

Boeve.

http://health.groups.yahoo.com/group/LBDcaregivers/message/61849

A Lewy Body patient

Lewy Body symptoms make my life one of constant frustration.

by Shirley Lay

http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730

Evaluating Meds

Advice from a PharmaD via Lin

http://health.groups.yahoo.com/group/LBDcaregivers/message/75551

Legal Stuff - get it done NOW

http://health.groups.yahoo.com/group/LBDcaregivers/files/

scroll down to this document:

The Business of Dementia.doc

The 'legal' things you need to know about

Top links to important LBD resources (IMHO)

A Must Read by Dr. Bradley Boeve

A Comprehensive Approach to Treatment can Significantly Improve the

Quality of Life of Patients with the Lewy body dementias.

http://tinyurl.com/c2m5l6

Diagnostic Review & Medicine Management

by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

and treating DLB/LBD. Includes recommended dosages.

http://tinyurl.com/bhppca

An Introduction to Lewy Body Dementia - for newly diagnosed patients and their

family

http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255

*** 2006, September 08 -- Lewy body dementia

From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the most

detailed, accurate information I've ever read about LBD. I think it should be

sent to all new caregivers AND doctors who aren't clear. Thoughts everyone? "

Keli says, " Definately yes!!! This is very informative yet not overwhelming. It

can easily be shared with others. I intend to have my husband and children read

it, and hopefully my moms dr's as well. Very good information. "

http://www.cnn.com/HEALTH/library/lewy-body-dementia/DS00795.html?iref=newssearc\

h

LBD Brochure

(to print use legal size paper)

http://www.lbda.org/feature/1925/facts-about-lbd-brochure.htm

" Difficulties in Diagnosing Lewy Body Dementia "

by T. MD

http://www.youtube.com/LBDAtv

Live Chat Event with Gomperts, MD

Dr. Gomperts answered your questions in this Q & A session from March 2007

http://www.lbda.org/category/3515/chat-transcripts.htm

If your LO hasn't been diagnosed yet, make sure they get a FDG-PET assessment.

http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627

And a summary of what's on this board:

Main board:

http://groups.yahoo.com/group/LBDcaregivers/

(Read your emails via the board vs. your `in box'. And get into all

the different sections that are available on the website. Search

archived messages here.)

Links Section:

http://health.groups.yahoo.com/group/LBDcaregivers/links

(Tons of links that is continuously a `work in progress' – all these

links are useful to the caregiver. A variety of categories neatly

organized into folders – what topic are you interested in? Find the

folder and within it find numerous links to other websites for

additional information.)

Files Section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

(Read other caregiver's stories, read about the good & bad drugs

here, print a " companion card " from here (cards to hand out in public

areas about your LO's behavior), find the locations of other

caregivers who are possibility living in your immediate area, FAQ

document, LBD Phases by LBD Caring Spouses, etc.)

Database Section:

http://health.groups.yahoo.com/group/LBDcaregivers/database

(Suggested reading, learn the common denominators about our loved

ones, medical referrals, nursing home referrals, bibliography of LBD

in literature and film, etc.)

Photos Section:

http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos

(Put a face to a name.)

Polls Section:

http://health.groups.yahoo.com/group/LBDcaregivers/polls

(Several polls running re: LBD)

; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006

(confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom

fell into the 50% category of those who could not handle antipsychotics; Was

successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept.

30th, 2006.