Re: Drugs used for angioplasty and what to tell hospital staff

[Guest guest]

Hi Tania,

People with LBD often have very negative results with sedatives and anasthesia,

some never do recover fully. It can adversely affect their thinking and mood and

behavior.  Hallucinations and delusions are common side effects.  Please read

the files at the group site regarding medications. You need to educate yourself

and your Dad's doctors as soon as possible about possible drug side effects on

LBD patients. Very sorry your Dad has been diagnosed with LBD, but this group

is very supportive and helpful.

Besh Wishes,

Pat M.

Subject: Drugs used for angioplasty and what to tell hospital

staff

To: LBDcaregivers

Date: Sunday, August 7, 2011, 1:37 AM

 

Hi all.

My Dad (diagnosed with LBD just a few months ago but showing signs for at least

2 years) is having several stents put into three blocked heart vessels in just

over a week. I'm wondering if anyone was aware if the contrast dye or other

drugs used during angioplasty/stent procedures can have an effect on LBD?

Also, when Dad was in hospital a few weeks ago (when the need for the stents was

discovered) we walked in after his procedure only to find a nurse 'yelling' at

him in order to get him to move faster. Naturally we got upset and Mum told the

nurse why Dad can't move quickly but now I'm concerned about how he'll again be

treated for this next procedure as most nurses I've come across haven't even

heard of LBD. Is there something, not too lengthy, that I could leave with Dad

so that they're aware of his condition and treat him accordingly? If I hear

someone speaking to him like that again, it could get ugly!

Thank you and peace to all,

Tania

[Guest guest]

I would mention this incident to that nurse’s supervisor. No matter what

ailment lands someone in hospital nurses should not be screaming at patients.

You could post a large poster above your dad’s head saying he has Lewy Body

Dementia and will therefore be slower and perhaps not understand what is going

on. Best of luck to you all.

Courage

From: aussiebin

Sent: Sunday, August 07, 2011 1:37 AM

To: LBDcaregivers

Subject: Drugs used for angioplasty and what to tell hospital

staff

Hi all.

My Dad (diagnosed with LBD just a few months ago but showing signs for at least

2 years) is having several stents put into three blocked heart vessels in just

over a week. I'm wondering if anyone was aware if the contrast dye or other

drugs used during angioplasty/stent procedures can have an effect on LBD?

Also, when Dad was in hospital a few weeks ago (when the need for the stents was

discovered) we walked in after his procedure only to find a nurse 'yelling' at

him in order to get him to move faster. Naturally we got upset and Mum told the

nurse why Dad can't move quickly but now I'm concerned about how he'll again be

treated for this next procedure as most nurses I've come across haven't even

heard of LBD. Is there something, not too lengthy, that I could leave with Dad

so that they're aware of his condition and treat him accordingly? If I hear

someone speaking to him like that again, it could get ugly!

Thank you and peace to all,

Tania

[Guest guest]

Tania,Two more suggestions for making others aware of your Dad's LBD

condition:LBD Medical Alert Wallet CardMedical Alert Wallet Cards are available

from the Lewy Body Association to help you quickly inform Emergency Room medical

professionals of important medication sensitivities in LBD. Present this card

any time you are hospitalized, require emergency medical care, or meet with a

new physician for the first time.MedicAlert Medical IDs MedicAlert medical IDs

can be engraved with LBD alert information. You can add Safe-Return information

for wanderers. Medical IDs are recognized by emergency responders around the

world. Tom See www.caringbridge.org/visit/pearlclark to read and follow

my wife's LBD journey.

To: LBDcaregivers

From: gaat@...

Date: Sun, 7 Aug 2011 11:31:32 -0400

Subject: Re: Drugs used for angioplasty and what to tell

hospital staff

I would mention this incident to that nurse’s supervisor. No matter what

ailment lands someone in hospital nurses should not be screaming at patients.

You could post a large poster above your dad’s head saying he has Lewy Body

Dementia and will therefore be slower and perhaps not understand what is going

on. Best of luck to you all.

Courage

From: aussiebin

Sent: Sunday, August 07, 2011 1:37 AM

To: LBDcaregivers

Subject: Drugs used for angioplasty and what to tell hospital

staff

Hi all.

My Dad (diagnosed with LBD just a few months ago but showing signs for at least

2 years) is having several stents put into three blocked heart vessels in just

over a week. I'm wondering if anyone was aware if the contrast dye or other

drugs used during angioplasty/stent procedures can have an effect on LBD?

Also, when Dad was in hospital a few weeks ago (when the need for the stents was

discovered) we walked in after his procedure only to find a nurse 'yelling' at

him in order to get him to move faster. Naturally we got upset and Mum told the

nurse why Dad can't move quickly but now I'm concerned about how he'll again be

treated for this next procedure as most nurses I've come across haven't even

heard of LBD. Is there something, not too lengthy, that I could leave with Dad

so that they're aware of his condition and treat him accordingly? If I hear

someone speaking to him like that again, it could get ugly!

Thank you and peace to all,

Tania

[Guest guest]

Hi Tania,

I would print the list of medications that are contrary to LBD and become

familiar with basics of why and have a talk with his cardiologist and any

other doctor that will be involved in the procedure and the hospital doctor

- who ever will be in charge of his care while your father is in the

hospital. Many people with LBD are quite sensitive to medications,

especially sedating, calming ones and medications used for pain. Some

might be ok and some could go either way - cause extreme agitation, anxiety,

confusion, even combativeness and almost a seemingly comatose state. This

is a very good thing for anyone involved with your father's care to

understand and be up on, ready at any moment because this is one of the most

pressing things in caring for someone with LBD that I have found. My

husband and I care for my mother in law (mil) now with the help of a

caregiver and this has been one of the biggest issues for her. Each time we

have had to go to ER or have a procedure done we have had to face these drug

sensitivity/reaction issues with her. Don't ever assume that a doctor or

anesthesiologist or nurse will understand or have any awareness of these

issues either because many do not. I have found the more prepared we are in

advance, with information clearly and in print, the better. I have a folder

of my mil's medications with dosage amount, frequency and reason for taking

( " Current Medications " ). I also have a list of all known allergies and

sensitivities to medications (I call it " Medication Allergies/Sensitivities "

At the bottom of this list I have information about being very cautious with

certain drugs, and avoidance of certain ones like neuroleptics and

anticholerngics (sp) because they are known to cause problems with LBD. I

also state that my mil has had trouble with these types of drugs and it is

best to avoid them but if they are necessary, to start off with low doses

and work up until the desired effect is reached. For my mil very often the

regular adult dose will send her in orbit somewhere, which is frightening.

With some of the danger medications that they have had to use she has done

ok with very low doses.

There are often alternatives to drugs they might use - or they might opt for

a whole other way of managing pain during the procedure. For my mil they

used a spinal block and a light sedation and she did fine. She cannot

tolerate fentynal in any way (that one is so bad I have listed it as an

allergy) but she can tolerate hydrocodone ok. So we use that for pain and

thank goodness it's been enough so far. She gets nausea sometimes and

instead of one of the sedating antinausea drugs she uses one called Zofran

(not sure if it's available where you live) which behaves in a whole

different way and controls the nausea well but does nothing to her mental

functions.

I have a folder with her papers, copies of her recent labs and tests and

have them in her dresser drawer along with copies of legal papers so that

when we need to go to the ER or to have a procedure I have them ready to

pull out and share. It's saved a lot of trouble.

As for the Nurse, if it were I or my husband, I would find out who the

supervisor is and I would make a complaint and let it be known that you are

very concerned about seeing this again and what to be sure you don't. Your

father is not an idiot, he has an illness and needs to be treated with the

respect and kindness. Now, I will say, for my mil, she is often confused

and sometimes she gets it in her head she wants to sit before it's time and

doesn't listen and will end up on the floor if I do not use a louder, clear

directive voice - " Mom, don't sit now you'll end up on your behind " " I'm not

sitting! " " Yes you ARE sitting (as I have my hand on her backside holding

her up) stand up straight! Now step backwards. step backwards, keep going,

one more step with this leg. Now reach back with your hands and touch the

arm of the seat before you sit " and so on. Or when the Parkinson's part of

the illness causes her feet go get stuck and I have to use a " coaching "

voice to get through. I also try to speak clearly when I am coaching her on

walking (which she has needed for a very long time now) and also count 1 2 3

4 so she can break the Parkinson's freeze in her feet and get into a rhythm

and walk her little steps. It is sometimes necessary to speak differently

to help break out of that foot/leg freeze and it's remotely possible the

nurse might have been trying something like this. For my mil this sort of

coaching and other tricks are the only way we have to keep her moving still

and was shown to us by one of her physical therapists. Otherwise she would

not be able to manage being ambulatory at all. I am sharing this because

I wasn't there and realize it might have been something like this, too. So

use your best judgment and let it be known you expect better treatment . If

your father does fine with walking and such and just needs time and patience

I'd sure make that known. Where ever you go in a hospital there will be

someone in charge - ultimately the admin's office. All nurses will have a

supervising nurse and the supervising nurses are often extremely proficient,

knowledgeable and interested in making sure things go smooth on their watch.

Hope everything goes smoothly for you all!

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of aussiebin

Sent: Saturday, August 06, 2011 10:38 PM

To: LBDcaregivers

Subject: Drugs used for angioplasty and what to tell

hospital staff

Hi all.

My Dad (diagnosed with LBD just a few months ago but showing signs for at

least 2 years) is having several stents put into three blocked heart vessels

in just over a week. I'm wondering if anyone was aware if the contrast dye

or other drugs used during angioplasty/stent procedures can have an effect

on LBD?

Also, when Dad was in hospital a few weeks ago (when the need for the stents

was discovered) we walked in after his procedure only to find a nurse

'yelling' at him in order to get him to move faster. Naturally we got upset

and Mum told the nurse why Dad can't move quickly but now I'm concerned

about how he'll again be treated for this next procedure as most nurses I've

come across haven't even heard of LBD. Is there something, not too lengthy,

that I could leave with Dad so that they're aware of his condition and treat

him accordingly? If I hear someone speaking to him like that again, it could

get ugly!

Thank you and peace to all,

Tania

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database 6356 (20110806) __________

The message was checked by ESET Smart Security.

http://www.eset.com

__________ Information from ESET Smart Security, version of virus signature

database 6358 (20110807) __________

The message was checked by ESET Smart Security.

http://www.eset.com

[Guest guest]

Hi Tania

I am really sorry to hear about the way your father was treated.

I think you mentioned previously that your father had been in RPA - which is

in the Sydney South West Area Health Service. Have you been given a copy of

their brochure " Your Rights and Responsibilities " ?- where it states clearly

that " You have the right to be treated with respect, dignity and

consideration .....

It also states that you have the right to " ... make a complaint " and

information is given about how to go about making such a complaint.

The brochure also states ... " To help us, you should ... give staff accurate

information as far as you can about your health; ... tell staff about any

problems you are having because of your treatment or the medications you are

taking. " I am attaching a copy for you.

I found that one of the most important responsibilities I had as a carer was

to be an advocate for Jim and to be quietly assertive to ensure that he

received the best care, especially by informing the staff about his

condition.

I also found that by giving praise and thanks where it was due to the

hospital staff, that I received a listening ear when I had a request or a

complaint to make.

I would suggest that you prepare an A4 size sheet with a brief outline of

what LBD is.

The LBDA website has some very clear information www.lbda.org under the

heading " Learn about LBD " - pick out the statements that best fit your

father's situation.

I would then suggest you print this on to bright yellow paper and request

that this be placed at the front of his clinical notes on the ward. The

bright yellow paper made sure that the information wasn't lost in all the

other notes.

I did this when I had some specific requests when Jim was in hospital, and I

had no problems having this put into his notes.

It's probably a good idea to have a copy in the Daily Observation Notes as

well - where they record BP, temp and medications.

You should be able to find out who is the anaesthetist for the procedure so

you can talk to him/her beforehand by phone, especially if you are not able

to be there at the hospital yourself. Ask them if they are familiar with LBD

and how they propose to manage your father.

Google Books includes a book called " Anesthesia and uncommon diseases " by

Lee A. Fleisher. Pages 282-284 are available on the internet where reference

is made to LBD. Orthostatic hypotension seems to be a key area of concern

for anaesthesia.

Although you cannot print from Google Books, you can get a copy of the

information by using the " Print Screen " button on your keyboard and pasting

this into a Word document! It transfers as an image which you can crop and

manage like other images.

All the best!

Elaine

Elaine (61) from Sydney Australia

Carer for four years for husband Jim (82) who died peacefully in hospital on

12th February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of LBD

[Guest guest]

Thanks so much Dorothy...such wise words. I really appreciate it and I'll be

taking your advice too by speaking with the nurse unit manager, etc.

Peace and smiles,

Tania...

________________________________

To: LBDcaregivers

Sent: Monday, 8 August 2011 4:20 AM

Subject: RE: Drugs used for angioplasty and what to tell

hospital staff

 

Hi Tania,

I would print the list of medications that are contrary to LBD and become

familiar with basics of why and have a talk with his cardiologist and any

other doctor that will be involved in the procedure and the hospital doctor

- who ever will be in charge of his care while your father is in the

hospital. Many people with LBD are quite sensitive to medications,

especially sedating, calming ones and medications used for pain. Some

might be ok and some could go either way - cause extreme agitation, anxiety,

confusion, even combativeness and almost a seemingly comatose state. This

is a very good thing for anyone involved with your father's care to

understand and be up on, ready at any moment because this is one of the most

pressing things in caring for someone with LBD that I have found. My

husband and I care for my mother in law (mil) now with the help of a

caregiver and this has been one of the biggest issues for her. Each time we

have had to go to ER or have a procedure done we have had to face these drug

sensitivity/reaction issues with her. Don't ever assume that a doctor or

anesthesiologist or nurse will understand or have any awareness of these

issues either because many do not. I have found the more prepared we are in

advance, with information clearly and in print, the better. I have a folder

of my mil's medications with dosage amount, frequency and reason for taking

( " Current Medications " ). I also have a list of all known allergies and

sensitivities to medications (I call it " Medication Allergies/Sensitivities "

At the bottom of this list I have information about being very cautious with

certain drugs, and avoidance of certain ones like neuroleptics and

anticholerngics (sp) because they are known to cause problems with LBD. I

also state that my mil has had trouble with these types of drugs and it is

best to avoid them but if they are necessary, to start off with low doses

and work up until the desired effect is reached. For my mil very often the

regular adult dose will send her in orbit somewhere, which is frightening.

With some of the danger medications that they have had to use she has done

ok with very low doses.

There are often alternatives to drugs they might use - or they might opt for

a whole other way of managing pain during the procedure. For my mil they

used a spinal block and a light sedation and she did fine. She cannot

tolerate fentynal in any way (that one is so bad I have listed it as an

allergy) but she can tolerate hydrocodone ok. So we use that for pain and

thank goodness it's been enough so far. She gets nausea sometimes and

instead of one of the sedating antinausea drugs she uses one called Zofran

(not sure if it's available where you live) which behaves in a whole

different way and controls the nausea well but does nothing to her mental

functions.

I have a folder with her papers, copies of her recent labs and tests and

have them in her dresser drawer along with copies of legal papers so that

when we need to go to the ER or to have a procedure I have them ready to

pull out and share. It's saved a lot of trouble.

As for the Nurse, if it were I or my husband, I would find out who the

supervisor is and I would make a complaint and let it be known that you are

very concerned about seeing this again and what to be sure you don't. Your

father is not an idiot, he has an illness and needs to be treated with the

respect and kindness. Now, I will say, for my mil, she is often confused

and sometimes she gets it in her head she wants to sit before it's time and

doesn't listen and will end up on the floor if I do not use a louder, clear

directive voice - " Mom, don't sit now you'll end up on your behind " " I'm not

sitting! " " Yes you ARE sitting (as I have my hand on her backside holding

her up) stand up straight! Now step backwards. step backwards, keep going,

one more step with this leg. Now reach back with your hands and touch the

arm of the seat before you sit " and so on. Or when the Parkinson's part of

the illness causes her feet go get stuck and I have to use a " coaching "

voice to get through. I also try to speak clearly when I am coaching her on

walking (which she has needed for a very long time now) and also count 1 2 3

4 so she can break the Parkinson's freeze in her feet and get into a rhythm

and walk her little steps. It is sometimes necessary to speak differently

to help break out of that foot/leg freeze and it's remotely possible the

nurse might have been trying something like this. For my mil this sort of

coaching and other tricks are the only way we have to keep her moving still

and was shown to us by one of her physical therapists. Otherwise she would

not be able to manage being ambulatory at all. I am sharing this because

I wasn't there and realize it might have been something like this, too. So

use your best judgment and let it be known you expect better treatment . If

your father does fine with walking and such and just needs time and patience

I'd sure make that known. Where ever you go in a hospital there will be

someone in charge - ultimately the admin's office. All nurses will have a

supervising nurse and the supervising nurses are often extremely proficient,

knowledgeable and interested in making sure things go smooth on their watch.

Hope everything goes smoothly for you all!

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of aussiebin

Sent: Saturday, August 06, 2011 10:38 PM

To: LBDcaregivers

Subject: Drugs used for angioplasty and what to tell

hospital staff

Hi all.

My Dad (diagnosed with LBD just a few months ago but showing signs for at

least 2 years) is having several stents put into three blocked heart vessels

in just over a week. I'm wondering if anyone was aware if the contrast dye

or other drugs used during angioplasty/stent procedures can have an effect

on LBD?

Also, when Dad was in hospital a few weeks ago (when the need for the stents

was discovered) we walked in after his procedure only to find a nurse

'yelling' at him in order to get him to move faster. Naturally we got upset

and Mum told the nurse why Dad can't move quickly but now I'm concerned

about how he'll again be treated for this next procedure as most nurses I've

come across haven't even heard of LBD. Is there something, not too lengthy,

that I could leave with Dad so that they're aware of his condition and treat

him accordingly? If I hear someone speaking to him like that again, it could

get ugly!

Thank you and peace to all,

Tania

__________ Information from ESET Smart Security, version of virus signature

database 6356 (20110806) __________

The message was checked by ESET Smart Security.

http://www.eset.com

__________ Information from ESET Smart Security, version of virus signature

database 6358 (20110807) __________

The message was checked by ESET Smart Security.

http://www.eset.com

[Guest guest]

That's fantastic, thanks Tom. I did look into a Medic Alert bracelet for Dad

recently so I think I'll go ahead and get him one. I'll also be sure to have a

look at the website.

Thanks again, it's very much appreciated.

Tania....

________________________________

To: lbdcaregivers

Cc: Kathleen Elliott

Sent: Monday, 8 August 2011 2:33 AM

Subject: RE: Drugs used for angioplasty and what to tell

hospital staff

Tania,Two more suggestions for making others aware of your Dad's LBD

condition:LBD Medical Alert Wallet CardMedical Alert Wallet Cards are available

from the Lewy Body Association to help you quickly inform Emergency Room medical

professionals of important medication sensitivities in LBD. Present this card

any time you are hospitalized, require emergency medical care, or meet with a

new physician for the first time.MedicAlert Medical IDs  MedicAlert medical IDs

can be engraved with LBD alert information.  You can add Safe-Return

information for wanderers.  Medical IDs are recognized by emergency responders

around the world.      Tom See www.caringbridge.org/visit/pearlclark

to read and follow my wife's LBD journey.

To: LBDcaregivers

From: gaat@...

Date: Sun, 7 Aug 2011 11:31:32 -0400

Subject: Re: Drugs used for angioplasty and what to tell

hospital staff

 

   

     

     

      I would mention this incident to that nurse’s supervisor.  No matter

what ailment lands someone in hospital nurses should not be screaming at

patients.

You could post a large poster above your dad’s head saying he has Lewy Body

Dementia and will therefore be slower and perhaps not understand what is going

on.  Best of luck to you all.

Courage

From: aussiebin

Sent: Sunday, August 07, 2011 1:37 AM

To: LBDcaregivers

Subject: Drugs used for angioplasty and what to tell hospital

staff

Hi all.

My Dad (diagnosed with LBD just a few months ago but showing signs for at least

2 years) is having several stents put into three blocked heart vessels in just

over a week. I'm wondering if anyone was aware if the contrast dye or other

drugs used during angioplasty/stent procedures can have an effect on LBD?

Also, when Dad was in hospital a few weeks ago (when the need for the stents was

discovered) we walked in after his procedure only to find a nurse 'yelling' at

him in order to get him to move faster. Naturally we got upset and Mum told the

nurse why Dad can't move quickly but now I'm concerned about how he'll again be

treated for this next procedure as most nurses I've come across haven't even

heard of LBD. Is there something, not too lengthy, that I could leave with Dad

so that they're aware of his condition and treat him accordingly? If I hear

someone speaking to him like that again, it could get ugly!

Thank you and peace to all,

Tania

[Guest guest]

Tania - Please go to the www.lbda.org website. There are many bits of

information (and pamphlets) that can be given. Here are two different links to

view. The second has a wallet card and much more information:

http://www.lbda.org/node/473 and

http://www.lbda.org/category/4115/publications.htm

[Guest guest]

Hi

I printed out the Card explaining what LBD is and put it on refrigerator and

told my sister, the CNA's and my mother to hand it to the Ambulance workers and

the ER staff. Also lists all contraindicated drugs.

Also even doctors - his primary and his Neurologist - need to be given the cards

because they sometimes prescribe sedatives or something wrong for LBD patient.

My Dad had emergency surgery April 2010 and it took 6 weeks for him to stop

hallucinating and learn to walk and talk again. - from the drugs that they gave

him in hospital. Went to Inpatient Rehab.

This year in June 2011 he fell and was given a shot of morphine by the Ambulance

workers ! I was not there to stop them. My sister, mother and aides did not

know it was happening. So - long story short - another 8 weeks to learn to

walk, talk and stop hallucinating. Went to inpatient rehab.

So I called the Fire Department in their town, and they said there is a red

refrigerator magnet that has a sleeve to put Medical Info in - and that the

Medics are trained to look for it. It says FILE OF LIFE. I put the LBD medic

alert card and all his medications and contraindicated drugs in that little

sleeve.

So now I am just crossing my fingers. He responded to P.T. so well, he is

walking around and smiling. He is a sweetheart and very cooperative. This is a

huge difference from 2 months ago when things were very dark.

H

[Guest guest]

Thank you Tania !

and good luck to you too !!

[Guest guest]

Attention Teri and prostate cancer surgery

OK the Card is in a folder that came when I joined this very group we are on

here.

Later I will look for it and try to send it to you. I printed it out - then cut

it like a credit card size. My father is never with a wallet, or on his own -

so I used it - to put on refrigerator.- to try to get info to Ambulance people

that seem to be called at least quarterly - I don't live with my parents or even

close by - its about an hour away.

The card is great because it says - LBD - what it is - what drugs are

contraindicated

I also wrote my own cards of info and put it in the sleeve of the fridge magnet

with the LBD card.

The thing that freaks me out the most is --- Doctors, E.R staff, ambulance

workers, even their own primary doctors and even Neurologists - don't do the

right thing ! and sometimes give them wrong meds.

Some of them do not know what LBD is - I'm sure they would learn if they had

a parent with it !!