Judy

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Judy, we are so glad to have you...

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Hi judy,

 

i was poa of my father as well. and it was diffiucly,  he had fallen and broken

his hip, i oped to do the surgery to help him wiht pain, and honestly if i had

to do over agin, i would NOT do it.

daddy died 3 month from the surgery, he ahd a lung blood clot after surgery as

well, adn i ripped up dnr becuase daddy was looking into my eyes, begging for

help to breathe. i went to war with thehosp and said i signed the dnr but he

wants the procedure  DO IT>  fhs surgery wasw the start of daddys end.

 

i also have been daignosed with lbd. adn i am startig the roller coaster

ride   i however am foturnate that i am in teh early stages, becuae i have

same docs as daddy did and they compared my brain mri's to his from years before

lbd was dianosed and mine can be pu t rigth on top of daddys ad you cant tell

whose is whose. it is ery scary,  i ahve gotten lost, as i still drive once in

a while, very seldom alone though, and thank God for the gps a friend gave me

for christams iw as able to push teh go home button and gethome,  i was

convinced that iw as in nashville where i lved for 20 eyars but moved away ffrom

in 2003, adn had i asked for dirctions iw oudl ahve become stranded with no gas

on a long strethc of lonely highway.tying to get to interstae 65, i lived off

that intestate in tennessee.  but it s almost 2 hours from here. 

 

scary hallucinatoins,  my daddy did a lot of covert actions in the military

during the cold war adn his halluicinations were scary   always concering the

kgb and cia out to get him or to get mme to get to him.  he was terrified and

spent many times with a look of pure fear on his face. so sad,  if i had to go

anywhere which he ated me leavin ghte house, he was then able to tell time and

only then, and if i was one minute late he would go into hystericas until i got

home, so we learned to tell him one half to one hour later that we would be home

to give donnie and my self some quiet time wiht each otehre, and get home

'early' so he woundt have reason to get upset.

 

also my lbd fluctuates with my other health,  curretnly i have not only a

doubloe kindy  infectoin which i have redurrently  i also hae a chest

cold/bronchities. and i can tell my lbd gets worse during these times.  

 

my hallucatins are scary to me,  i have palmetto bugs and i frequently wake my

hubby up to kill one tht isnt there but he dutifully killls it and picks it up

adn puts in teh the trashk, on my good days whcih i ahve plenty of with lbd

still, i understand that there werent any palmetot bugs there but on my lbd days

you cannot convince me that they are not there, i see them they are there. 

 

i have infrequewnt falls, often down our 3 cement steps leading into our

carport,  they are not skinny steps but wider deck type steps, we put in

railings for daddy adn i use thenm but i still fall, wheterh i amwearig my

crocs, my flops ro barefooted, adn each time i fall my shoes stay on my feet so

it cant be my shoe slipped as they are all slipons they woueld ahvec ome off. 

 

you asked about hospice, i woudl suggest calling them in now,  they are a

wonderful organiatons adn do not come in just when death is immeinent but now

they come in much sooner. they were wonderful to daddy. they  took alot of

pressure off of us.  they woudl come m=f and wash /bathe daddy , cut his hair,

shave him, and do all the things that he hated me his daughter doing. 

 

oh i must warn you that lbd often has a person with very inappropireate sexual

comments. as their frontal lobe is damaged *shrunk* and this is the inhibitions

the place where reight and worng is decied on  and since this is the mostly

damagae part in lbd the ability to know right/worng is diminished,  so beware

fo actions that are not appropriate. 

 

good luck and if i cn help you, please let me know,  put sharon in hte subject

line as often i dont read all the emails,  and frogive my typing, i was a

college grad but now with lbd i have difficutly with grammar and spelling 

sigh,  hugs. sharon

I am the daughter of Leonard whom was diagnosed in May 2004 and  he died of

complicatons *blood pressure started dropping and wouldn't recover* on Sept 25,

2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing

hallucinations and falling issues since prior to 1994. We moved in to take care

of him Jan 19, 2003 and still live in his house. And in feb 2009, i have been

diagonosed with 99% probability of lbd. Hoping that a cure or treatment will be

found before it's too late for me.

From: Donna Mido <_twomido@..._ (mailto:twomido@...) >

Subject: Re: We have been really slow!!!!!

To: _LBDcaregivers _ (mailto:LBDcaregivers )

Date: Wednesday, August 11, 2010, 10:05 AM

Imogene,

That is not an unusual story. Caregivers often run out of energy after

caregiving. I am so sorry this has happen to you.

I do hope you are resting and eating healthy stuff and taking your

vitamins. It does take a while to catch back up. And you did such a good job

with

that Texas gentleman.

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: We have been really slow!!!!!

Good Morning Dear Donna and ,

It's difficult to keep up with the mail so don't always succeed. I am

having health problems and am not feeling up to par so much lately.

I do love both of you, and think you are tops.

If I can be of any help I will try.

My Don passed April 22, 2010, and now that all the work and driving myself

is over, I think I am collapsing.

The doctor is sending me to specialist to look into several areas, and

perhaps we can find out why I have persistent diarrhea, fever, fatigue and

weight loss.

She did run a test on my blood, and said I do not have a certain type of

blood cancer. It's like Leukemia,

but has a different name. I forgot what it was right now.

Please anyone that wants to share, I will pitch in where I possible can

and

help if possible,

Love you all,

Imogene

In a message dated 8/9/2010 12:01:11 A.M. Central Daylight Time,

_twomido@..._ (mailto:twomido@...) writes:

I do hope the new people who have been wanting to join the group are not

getting discouraged. We have had so few messages lately.

I hope if you want to introduce yourself you will and ask questions.

My Mom died in '02. I took care of her for 4 years. So I have been

through as many more have here, lots of experiences you are having.

I hope you have been reading some previous messages here if you have done

nothing else. And I hope you have seen 's links and other things

she have carefully put together. You will need to go to the Yahoo site for

that. You can click on the bottom of this message and should see

messages.

and I are monitors to the group and we welcome you here.

Hugs.

Donna R

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