Frustrated and need answers

[Guest guest]

Hi all,

My mother is in a Mental hospital right now and they

dont know what to do for her. The doctor says it isnt

possible to tell if anyone has Lewy Body unless that

person is dead. So he gave her respirdol.. b a d...

then (sic) seriquil. No results. She is popping

ativan like candy and taking furaset with codeine.

(im sorry I dont know how to spell it) They want to

release her to a nursing but no one will take her

because she WOW psychotic- and very aggressive. A)

does anyone have any medication advice for them to

try? and does anyone have any idea of a nursing

home in the Dallas area where she could go? She's

medicaid. I cant stand this stress. Thanks all!

chris

[Guest guest]

Activan makes LBD patients psychotic like your mother. It will also make

them spiral downhill and not recover. Do not let her have antipsychotic

medications. LBD is not like other mental illnesses that can be helped with

those

medications. Risperdal also did a big time number on my husband.

He is on 150mg of Zoloft, and Razadyne 16mg. It has been working well for

him.

Imogene

In a message dated 8/30/2006 10:43:50 PM Central Daylight Time,

christineswilliams@... writes:

Hi all,

My mother is in a Mental hospital right now and they

dont know what to do for her. The doctor says it isnt

possible to tell if anyone has Lewy Body unless that

person is dead. So he gave her respirdol.. b a d...

then (sic) seriquil. No results. She is popping

ativan like candy and taking furaset with codeine.

(im sorry I dont know how to spell it) They want to

release her to a nursing but no one will take her

because she WOW psychotic- and very aggressive. A)

does anyone have any medication advice for them to

try? and does anyone have any idea of a nursing

home in the Dallas area where she could go? She's

medicaid. I cant stand this stress. Thanks all!

chris

[Guest guest]

Dear , My heart is with you. My mom has LBD, too - along with several

other psych disorders - and everybody else on this forum will feel for you, too.

And you'll get a lot of support here. So keep checking your mail.

Did you get to this forum through the Lewy Body Dementia Association website?

It is worth while taking some time and printing out several of the articles

available there. They cover what kinds of meds are best for LBD - and it's

suggested you pass them on to your mom's doctor.

LBD seems to affect different people differently, although many " symptoms "

follow a pattern. I'm not a doctor and can only tell you my experience and what

I've learned from the MD and pharmacologist who take care of my mom. There are

some well accepted clinical standards for diagnosing LBD. You can read about

those at the LBDA site. You can do an Internet search and find thousands of

scholarly articles about LBD, but since you want quick info, save time and

aggravation by also reading about LBD at such reputable sites as Mayo

Clinic.com, national institutes of mental health.gov, even web md.com. Again,

print out info and keep it with you. I needed it as I looked for a doc to

replace one who told me just about the same thing you're hearing.

Please forgive me if this is a rude question, but what brought your mom to the

psych hospital? Behavior problems, anxiety attacks, depression, aggression, bad

meds . ? My mom was diagnosed after she started screaming and attacking people

and having severe hallucinations and paranoia. But very often when people with

LBD are stabilized on proper medication, they can be at home or in a home-like

setting such as a care facility. My mom has rapidly-progressing LBD with

psychosis, but can remain in seniors' facility because her meds are monitored

and she gets good care. She's pretty stable and isn't suffering like she did

back then.

Bringing me to another rude question: how do you feel about your mom's MD? Is

this her regular doctor, or someone assigned by the hospital? Many of us caring

for people with LBD select MDs pretty carefully when we can, as not all docs

understand this disease. Many of them treat it as they might Alzheimer's or the

dementia that sometimes goes with Parkinson's Disease. And some treatments that

help those diseases make LBD worse. That seems to be true with drugs like

Ativan, which in many people with LBD makes agression and confusion worse. My

mom is a perfect example. It calms down a lot of people, but often has the

opposite effect on LBDers. How long has the doctor had your mom on Seroquel or

Risperdol or other such drugs? According to the LBD literature, Seroquel is one

of the prefered meds. And the MD should know that many meds can take days or

even weeks to work properly. They can't just be changed around like I

mightswitch to Tylenol when Bayer aspirin doesn't cure my

headache.

That brings me back to the MD. If you really like and trust him, then try to

educate him about LBD and ask him to talk to colleagues. But if you aren't

comfortable with the care he's providing, request a second opinion. That can be

harder in a hospital where there's a limited group of MDs and you can't just

call one in from outside. If it's a large hospital, ask for a consultation with

the department chair or the senior psychiatrist. A second opinion is your right

and good MDs won't be offended if you request one. Diseases with psyhiatric

components are complicated, but they are definitely treatable. Don't give up on

your mom and don't let the doctor give up, either. The behavior you describe is

usually very treatable - it may be they haven't given her the right medications

in the right dosages for the right amount of time. I don't mean to make this

sound simple. It's not, but neither does your mom have to keep suffering. She

is fortunate to have you as her advocate and

support.

I can offer to help with resources in the Dallas area. I'm an officer at a

Methodist Church-related, non-profit health care system in Chicago. Through a

professional association, I have working relationships with the administrators

of about a hundred hospitals and senior care centers in the U.S. I know of

eleven very fine senior care centers in Texas: two are in Dallas proper, and

nine others around the state. I also know senior administrators at ten Texas

hospitals, including Methodist Hospitals of Dallas. Do you know it? It's a

large organization with great doctors and also connections to senior care

centers. (No religious affiliation required.) Even if you didn't want or need to

use their services, folks at these places would be glad to give you names and

numbers of other facilities considered to be reputable.

Medical schools - which are always connected to big hospitals - have many docs

knowledgeable about LBD and other related illnesses - call the departments of

geriatric psychiatry, neuro-psychiatry, or neurology and get referrals. Most

med school departments have social workers or nurse-practitioners you can talk

to who can make an appointment for you. The Alzheimer's Association in Dallas

will have a list of MDs who treat different kinds of dementias and other

neurological diseases. It likely will also have a list of accredited nursing

facilities that specialize in caring for those with dementia and/or psychiatric

illnesses and phyical ailments, too. So will the local mental health

association. Call some of the places with the best credentials and talk to the

admissions person. Ask about their psych and dementia programs. Describe your

mom's situation. If one place isn't able to help, the admissions person should

be able to refer you on. If you are not keeping the current

MD, you'll need to have one see your mom to admit her into the facility of your

choice. Some nursing facilities have very good medical directors skilled in

caring for seniors with complicated problems, and who will become your mom's MD

when she enters the facility. Ask who the medical director is, get his/her

credentials, and call his/her office and ask to discuss the case. Some larger

hospitals are part of a health caresystem which includes nursing homes.

, you are in a difficult situation and it warms my heart to hear how

much you want to help your mom. If you would like, I'm glad to give you the

names and numbers of my Texas colleagues. I would not share your name or

situation with them, but just tell them they might get a call from a lady I know

named . That would preserve your anonymity while giving you quick

access to them. We do help each other out in this way rather often, so they

won't be surprised. You're welcome to call me at my office - it's a published

number: 773/989-1354 and just ask for me, Lin.

My mom's been where yours is now - and I've asked the same questions. Of

course I want to help. And so will lots of people at this site. Hope to hear

from you . . . but if not, you and your mom will still be in my thoughts and

prayers.

Lin

christine wrote:

Hi all,

My mother is in a Mental hospital right now and they

dont know what to do for her. The doctor says it isnt

possible to tell if anyone has Lewy Body unless that

person is dead. So he gave her respirdol.. b a d...

then (sic) seriquil. No results. She is popping

ativan like candy and taking furaset with codeine.

(im sorry I dont know how to spell it) They want to

release her to a nursing but no one will take her

because she WOW psychotic- and very aggressive. A)

does anyone have any medication advice for them to

try? and does anyone have any idea of a nursing

home in the Dallas area where she could go? She's

medicaid. I cant stand this stress. Thanks all!

chris

Welcome to LBDcaregivers.

[Guest guest]

What wonderful help, Lin. Thank you. I wanted to help, , so very

badly, and didn't have the answers. This is really great.

Thanks again,

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 8/31/2006 5:20:14 AM Central Daylight Time,

lprattbethany@... writes:

Dear , My heart is with you. My mom has LBD, too - along with

several other psych disorders - and everybody else on this forum will feel for

you, too. And you'll get a lot of support here. So keep checking your mail.

Did you get to this forum through the Lewy Body Dementia Association

website? It is worth while taking some time and printing out several of the

articles

available there. They cover what kinds of meds are best for LBD - and it's

suggested you pass them on to your mom's doctor.

LBD seems to affect different people differently, although many " symptoms "

follow a pattern. I'm not a doctor and can only tell you my experience and

what I've learned from the MD and pharmacologist who take care of my mom. There

are some well accepted clinical standards for diagnosing LBD. You can read

about those at the LBDA site. You can do an Internet search and find thousands

of scholarly articles about LBD, but since you want quick info, save time and

aggravation by also reading about LBD at such reputable sites as Mayo

Clinic.com, national institutes of mental health.gov, even web md.com. Again,

print

out info and keep it with you. I needed it as I looked for a doc to replace

one who told me just about the same thing you're hearing.

Please forgive me if this is a rude question, but what brought your mom to

the psych hospital? Behavior problems, anxiety attacks, depression,

aggression, bad meds . ? My mom was diagnosed after she started screaming and

attacking

people and having severe hallucinations and paranoia. But very often when

people with LBD are stabilized on proper medication, they can be at home or in

a home-like setting such as a care facility. My mom has rapidly-progressing

LBD with psychosis, but can remain in seniors' facility because her meds are

monitored and she gets good care. She's pretty stable and isn't suffering like

she did back then.

Bringing me to another rude question: how do you feel about your mom's MD?

Is this her regular doctor, or someone assigned by the hospital? Many of us

caring for people with LBD select MDs pretty carefully when we can, as not all

docs understand this disease. Many of them treat it as they might Alzheimer's

or the dementia that sometimes goes with Parkinson's Disease. And some

treatments that help those diseases make LBD worse. That seems to be true with

drugs like Ativan, which in many people with LBD makes agression and confusion

worse. My mom is a perfect example. It calms down a lot of people, but often

has the opposite effect on LBDers. How long has the doctor had your mom on

Seroquel or Risperdol or other such drugs? According to the LBD literature,

Seroquel is one of the prefered meds. And the MD should know that many meds can

take days or even weeks to work properly. They can't just be changed around

like I mightswitch to Tylenol when Bayer aspirin doesn't cure my

headache.

That brings me back to the MD. If you really like and trust him, then try to

educate him about LBD and ask him to talk to colleagues. But if you aren't

comfortable with the care he's providing, request a second opinion. That can

be harder in a hospital where there's a limited group of MDs and you can't

just call one in from outside. If it's a large hospital, ask for a consultation

with the department chair or the senior psychiatrist. A second opinion is

your right and good MDs won't be offended if you request one. Diseases with

psyhiatric components are complicated, but they are definitely treatable. Don't

give up on your mom and don't let the doctor give up, either. The behavior you

describe is usually very treatable - it may be they haven't given her the

right medications in the right dosages for the right amount of time. I don't

mean to make this sound simple. It's not, but neither does your mom have to

keep suffering. She is fortunate to have you as her advocate and

support.

I can offer to help with resources in the Dallas area. I'm an officer at a

Methodist Church-related, non-profit health care system in Chicago. Through a

professional association, I have working relationships with the

administrators of about a hundred hospitals and senior care centers in the U.S.

I know of

eleven very fine senior care centers in Texas: two are in Dallas proper, and

nine others around the state. I also know senior administrators at ten Texas

hospitals, including Methodist Hospitals of Dallas. Do you know it? It's a

large organization with great doctors and also connections to senior care

centers. (No religious affiliation required.) Even if you didn't want or need

to

use their services, folks at these places would be glad to give you names and

numbers of other facilities considered to be reputable.

Medical schools - which are always connected to big hospitals - have many

docs knowledgeable about LBD and other related illnesses - call the departments

of geriatric psychiatry, neuro-psychiatry, or neurology and get referrals.

Most med school departments have social workers or nurse-practitioners you can

talk to who can make an appointment for you. The Alzheimer's Association in

Dallas will have a list of MDs who treat different kinds of dementias and

other neurological diseases. It likely will also have a list of accredited

nursing facilities that specialize in caring for those with dementia and/or

psychiatric illnesses and phyical ailments, too. So will the local mental

health

association. Call some of the places with the best credentials and talk to the

admissions person. Ask about their psych and dementia programs. Describe

your mom's situation. If one place isn't able to help, the admissions person

should be able to refer you on. If you are not keeping the current

MD, you'll need to have one see your mom to admit her into the facility of

your choice. Some nursing facilities have very good medical directors skilled

in caring for seniors with complicated problems, and who will become your

mom's MD when she enters the facility. Ask who the medical director is, get

his/her credentials, and call his/her office and ask to discuss the case. Some

larger hospitals are part of a health caresystem which includes nursing homes.

, you are in a difficult situation and it warms my heart to hear

how much you want to help your mom. If you would like, I'm glad to give you the

names and numbers of my Texas colleagues. I would not share your name or

situation with them, but just tell them they might get a call from a lady I

know

named . That would preserve your anonymity while giving you quick

access to them. We do help each other out in this way rather often, so they

won't be surprised. You're welcome to call me at my office - it's a published

number: 773/989-1354 and just ask for me, Lin.

My mom's been where yours is now - and I've asked the same questions. Of

course I want to help. And so will lots of people at this site. Hope to hear

from you . . . but if not, you and your mom will still be in my thoughts and

prayers.

Lin

christine <_christineswilliams@christine_

(mailto:christineswilliams@...) > wrote:

Hi all,

My mother is in a Mental hospital right now and they

dont know what to do for her. The doctor says it isnt

possible to tell if anyone has Lewy Body unless that

person is dead. So he gave her respirdol.. b a d...

then (sic) seriquil. No results. She is popping

ativan like candy and taking furaset with codeine.

(im sorry I dont know how to spell it) They want to

release her to a nursing but no one will take her

because she WOW psychotic- and very aggressive. A)

does anyone have any medication advice for them to

try? and does anyone have any idea of a nursing

home in the Dallas area where she could go? She's

medicaid. I cant stand this stress. Thanks all!

chris

Welcome to LBDcaregivers.

Yahoo! Groups Links

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Non-text portions of this message have been removed]