Re: LBD Warfarin

January 1, 2006

My husband is also on a blood thinner and this is a big concern due to all his

falls and imbalance...the dr. is going to give him a test to determine if it is

necessary for him to remain on them...I am not sure what the test is...this is

our new doctor..but most of the doctors who have seen agree that this is

a dangerous situation..he could have a serious bleed from a fall...he also has

REM sleep disorder and hallucinarions..but had them before ever diagnosed and

put on meds....

Sharon wrote:

kathy,

iam so sorry you had to search us out but so glad you did so and found us,

my dad died9/25/05 after being diagnosed for just over 1 year, his fast

decline was due to 2 serious falls, one created a small fracture unknown to

us, and the other fractured the hip ball ot the point of needind surgery

dad declined quickly after surgery dealing with post surgery he had a

pulmonary embolyis and 2 bouts of aspiration pneumonia and also a uti, he

died quickly we had planned and had arranged to have him brought home oct

5th he died 10 days before and ;he lived up to his promise to his mom that

shewouldnt be burying her baby boy she died the later part of aug and he

died 9/25.

make sure that all paperwork is done that is very imporatnat becuase with

lbd the mind changes so quick that you cannot count on tomorrow, we were

very lucky that we got to do that, as when the lawyer met dad he was ok but

by the time the paperwork was done about 4 weeks dad was confused already.

someone is pretty much on line as we are scattereed all over the world we

ahve people in new zealand, england, canada and us and other countries as

well. so anytime you have questions or comments you will be surpirzed how

quick you get answers.

dad did well on exelon for about 1 year, that was prior to the falls that

broke his hip. the key things to know is to check the files here for a list

of meds that have been known to cause adverse effects to lbders, althought

they are commonly used for dementia and halluckinations. ativan being one

of the devils. lbders react very differently to any meds., even something as

simple as a cold pill can put an lbder in a down ward spiral. iintrodue

meds one at a time and at a very low dosage. slow and low is much b etter.

exelon offers a great caregiver support program, that helped me immensely

1-877-memory 4 . we added namenda but dad began having orthostatic bp

issues, severe ones so we had to stop all nonlife 'essential' meds. dad

took zoloft starting at 50mg and in 1.5 years at his death was up to 150mg

zoloft for ihs hallucinations and dr jekyll mr hyde routine. he also had to

take blood thinners due to his immobility after surgery and that was for

life. and he took meds to help his bp as well as lortab 7.5 one to two at

12 noon/midnite and 6pm/am he didnt feel pain to complain about but his hip

kept him in a permanent stork position and that was awful. i could tell he

was in pain when he was more squirmy and agitated.

what meds are your mother taking. how is your dad holidng up. i am glad

you are seekig respite care hospice is wonderful and they were God sent

angels for me helping dad. good luck and take care sharon m pensacola fl

-- LBD

Hello Everyone,

I am new to this Yahoo Group. My mother was diagnosed this fall

with LBD. We did not notice any changes in her until 5/2005 at

which time she had a serious fall with loss of consciousness. Since

that time it has been a rapid downward spiral.

I am a healthcare provider and knew basic info about this dreadful

disease but had no idea how rapidly it would progress. But knowing

LBD and living it with a family member are two very different

things. My Mom appears to be in mid stages at this time and losing

more and more of her abilities each day.

My father is doing the best he can to care for her and keep her at

home as long as possible. I live about 1 hour away and I have a

sister who lives in the same town. She tries to visit regularly.

we are already seeing our father dealing with the emotional roller

coaster that goes with chronic care giving. We are trying to get

him in a local support group and find avenues to give him respite.

They are both 83 years of age and live in a small mid-western town.

I would appreciate any words of wisdom or support this group could

provide. Thank you.

Kathy

Welcome to LBDcaregivers.

January 1, 2006

meg,

dad wasnt on bloood thinners until he was totallyhbed bound and post

operative i personally was on bl thinners after i had a severe blood clot

from an iv that went bad, and i had the attic stairs fall from the ceiling

adn unfold and hit me in 4 places i had to have a total mri to make sure

there were no bleeds, if he doesnt have to be on them and he is still

somewhat ambulatory i would chose ambulation over them but i am not a

medical professional that is just a caregivers opinion, your doctors know

best about that, the test is probably just a clotting factor to see what

rate his blood clots or possibly and ultrsound to see if the clots have

dissolved. or both. or something else, i have been a professional patient

most of my life *20 abdomonial surgeries* for bladder disease among other

things.

i pieced together rugs from walmart and made a jigsaw puzzle type arangement

trying to give dad more cushions on his fall, and donnie even duct taped the

seams so dads walker would roll over them easily. i bought the lowply rugs

so wheels could be pusshed over it easy enough. i used big pieces whereever

i could and cut up other ones to fill in the gaps, but mostlyh 6 x9 pieces

and 2x6 pieces, the least amount of seams hte easier it was for dad. i had

the same types put on the nbathroom floor in the end, i had donnie put

plywood down to mkae hte bathroom floor almost the same level as the other

areas and equaled it out but adding the same type of rugs so dad would have

an even flow also, be very careful of windows, dad fell usually to the right

but one time he fell into the bathroom window when he fell left just once.

we replaced the winfdow with cardboard and plastic, as i dididnt want daddy

to fall thru it again and risk a severe cut, his guardian angel was looking

after him on that fall, hugs sharon