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

[Guest guest]

Thanks Elaine, you're a God-send! I'll check all of that out and it just so

happens I have some very bright yellow paper to print on.

For this procedure (and the last one) Dad's actually at St 's.

I'll be onto it this time, in advance and on the day.

Will let you know how I get on.

Tania

________________________________

To: LBDcaregivers

Cc: 'Tania '

Sent: Monday, 8 August 2011 6:57 PM

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

hospital staff

 

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 for that and boy, what you've been through! I think I will do the

same re the card on the fridge. Dad has enough trouble moving now, let alone if

they gave him the wrong drug.

Thanks again and I hope your Dad keeps improving!

Tania...

________________________________

To: LBDcaregivers

Sent: Tuesday, 9 August 2011 12:42 AM

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

hospital staff

 

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]

My husband is scheduled for prostrate surgery in a few weeks and I want to be

fully armed.  What is this card you are talking about and where can I obtain a

copy.

has a number of other health problems and is very vulnerable to side

effects of medications.  I need to have all the information you can give me.

Thank you,

Teri

 

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

hospital staff

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, August 8, 2011, 5:20 PM

 

Thanks for that and boy, what you've been through! I think I will do the

same re the card on the fridge. Dad has enough trouble moving now, let alone if

they gave him the wrong drug.

Thanks again and I hope your Dad keeps improving!

Tania...

________________________________

To: LBDcaregivers

Sent: Tuesday, 9 August 2011 12:42 AM

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

hospital staff

 

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]

Teri, this is the card which can be given to emergency staff: 

http://www337.pair.com/lbda2007/sites/default/files/2008.10.03-LBDA_Emergency_Ca\

rd-for-printer.pdf

And this is a fact sheet that I'll be printing multiple copies of to give to

staff when my father goes to hospital next week: 

http://www.lbda.org/sites/default/files/2010-Fact-Sheet-EC.pdf

There's more info here:  http://www.lbda.org/category/4115/publications.htm

Good luck.

Tania.....

________________________________

To: LBDcaregivers

Sent: Tuesday, 9 August 2011 6:25 PM

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

hospital staff

 

My husband is scheduled for prostrate surgery in a few weeks and I want to be

fully armed.  What is this card you are talking about and where can I obtain a

copy.

has a number of other health problems and is very vulnerable to side

effects of medications.  I need to have all the information you can give me.

Thank you,

Teri

 

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

hospital staff

To: " LBDcaregivers " <LBDcaregivers >

Date: Monday, August 8, 2011, 5:20 PM

 

Thanks for that and boy, what you've been through! I think I will do the

same re the card on the fridge. Dad has enough trouble moving now, let alone if

they gave him the wrong drug.

Thanks again and I hope your Dad keeps improving!

Tania...

________________________________

To: LBDcaregivers

Sent: Tuesday, 9 August 2011 12:42 AM

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

hospital staff

 

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]

,

Thanks for your reply. Tania did email me the Card but through a .pdf file

which I was not able to open.  

I did join this group several months ago, but I'm not aware of a folder

containing this Card. Although, I must admit to inexperience and ignorance when

it come to maneuvering through emails and the internet. At my age, 73, these

things are getting harder and harder to grasp; especially now having to care for

24/7.

Thanks for all your help.

Teri

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

hospital staff

To: LBDcaregivers

Date: Wednesday, August 10, 2011, 7:25 A

 

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 !!

[Guest guest]

Teri,

I often have the same problem. I think if you go to the bottom or side of most

messages, there is a place to click on to take you back to Yahoo. There you

will find lots of files and information.

It took me a long time to find this info!

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: Drugs used for angioplasty and what to tell

hospital staff

To: LBDcaregivers

Date: Wednesday, August 10, 2011, 7:25 A

 

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 !!