Re: to cindy and dad update too

[Guest guest]

cindy,

hi welcome to the best group of people around. i am sharon m caregiver to

my 70 year old father he was only diagnosed this past may but he has had it for

i know 7 years. dad started out with the extreme paranoid and unexplained

falls and shuffling walk

dad is curretly take exelon which has helped dads decline in mental awareness

slow down quite a bit, but his walking is steadily getting worse, in april

he could walk with just a little assistnace like an arm to hold on to. when he

came out of hosptial we was using walker and a t the rate he is going now i

fully expect him to be wheelchair bound within several months. dad will top out

on exelon this next doctors visit on sept 20 and the we will add namenda

another good medicine for lbd.

dad has difficulty following instructions, he is literally a one track

mind, he cannot walk and talk at same time. you will learn to adapt. we have

found dad does best with a routine, medicines and breakfast at 1130am, dinner

530,, snack and medicines 8pm. even donnies and my activites are pretty

scheduled, keeps dad calmer. i also have made him a huge calendar, and thanks

to our

member pattis suggestions, i have given each day fo the week, happy thoughts,

like magic monday, terrific tuesday, witty wednesday, etc. and then below

tat i have month day, year this makes dad smile he likes the names of the

days, and keeps him easier on a routine. he also has his own calendar where i

write all our activites down, his doctors appointents, our friday nite bowliung

my tuesady nite calligraphy class etc, he feels a little more secure kknowing

our schedule now there are plenty of days he cannot read the calendar but

on the days he can, it helps a whole lot.

we have found daddy cannot eat lettuce, it hangs in his throat therefore he

gets choked. choking on food is comon for lbd patients, because they tend to

stuff their mouths until they cant swallow, and then choke. we cut all of

dads food up in bite size peices that helps quite a bit. i found a sharp pizza

cutter will cut uniformly and neatly and quickly .

the hardest thing about lbd is the quickness if fluctuations of good moments

and bad moments. very scary and heartbreaking .

dont be afraid to ask questions, many of us have been there /done that or

are going thru it right now, you will need to learn about the good medicines

and bad medicines, there is a file in the lbd home page taht lists these, i

suggest giving that list to all of your dads physicians and even pharmacsit, the

more people that know about this disease the better off we are. good luck

cindy

hugs, sharon m

a smile a day keeps the meanies away!!!

laughter is a breath of fresh air!

[Guest guest]

Welcome to the group. My Mom is 83 and has LBD. Like you I lost my Dad last

year and feel I never got a chance to grieve because of Mom. She fell and

cracked her head open on the day of his funeral and we spent most of the night

in the emergency room.

She was also put on Seroquel. What a disaster. It may help some people but

it certainly didn't help her. She became more violent and aggressive on it.

They have her on resperdal (on the bad list) and I am going to have them

change it again. She is very listless and her Parkinsonism is worse. They

haven't

found the right cocktail (a combination of meds) for her yet. having a good

neuro is important. Mine listens to me.

Please feel free to ask any question you may have because someone here will

have the answer or can make a suggestion as to where to find the answer. NO

QUESTION IS TOO SMALL OR SILLY.

We have discussed every aspect of this disease right down to bms and sexual

things they do. Yes there is some sexual things that seem common to this

disease. Making passes at outside caregivers to making suggestive comments.

We have a very nice lady who has LBD that is part of this group. Her name is

Patti. She has been an inspiration to all of us. She lets us know from the

point of view of someone who has the disease what it is like. She is also a

great poet.

Again, welcome to the group and I am sorry you had to come here for the

reason you did.

Jacqui

[Guest guest]

Hi

You discribed my Mom when you said she has trouble forming word and thinks

she is in a strange place even when she is in her own home. My Mom is on Exelon

and Reserdal for LBD but also on quite a few others for her other medical

problems.

When she tells me she is not at home, I ask her to discribe her home. Usually

she discribes where we are at and then I ask her to discribe where she is at

now and she always says the ceiling is too high. They do have a depth

deception problem. To her the ceilings are Cathedral style instead of the 8 ft

ones

she has. I then tell her its the disease that is making her think she is not

at home. She feels better knowing that she is not crazy but see what she see

because of something beyond her control.

She has hallucinations about strange people. They only come now when I am

not there and she wants me there.

Well good luck with your Mom and as I said before, we are here to help you on

your rollercoaster ride.

Hugs

Jacqui

[Guest guest]

wrote:

She gets very angry with me because she sees me as the enemy when she is

having her delusions.....Ive tried everything to get her through them but

nothing seems to shorten the duration....any suggestions?

*************************

I am very lucky because my mom has never had any delusions or

hallucinations. However, in regard to the wanting to go home, someone I

know did something VERY innovative. When her MIL said she wanted to go

home, this woman took her MIL for a car ride for several blocks and came

back to the house and announced that they were now home. It worked every

time!!

carol