new here

July 30, 2004

<< My Dad just watches it and acts like it's okay. He doesn't

demand better behavior, an apology, anything, UNLESS she tries to

pull that garbage on him, in which case he calls a halt to it. Why

is that? >>

I'll bet if he tries to protect anyone else she will turn her wrath

on him. He is doing what he needs to do to survive.

- Dan

March 2, 2005

Hi Carole,

My name is Gracie and my Father & I live in The San Francisco Bay Area. Dad

was diagnosed with LBD about 3 months ago, so I'm a newbie as well. My

short experience with this group has been a blessing. Welcome.

March 2, 2005

Hi Carole,

My name is Donna P. My dad is also 77. He will be 78 next month.

He was diagnosed with LBD in Aug. 03. He had been misdiagnosed for

9 months prior to that. My dad started to show symptoms after a

heart cathorization and stent placement following a mild heart

attack. Thinking back though, he had mild LBD symptoms prior to

that. I feel the procedure really progressed it so that we noticed

extreme changes. I too lost my mother, 4 years ago to cancer.

Sounds similar to your life. I have 4 sisters, one of which activly

helps in dads care. He lives with me and my family. I have 2

caregivers who come in to help me. For 9 months I didn't have the

caregivers, they have been a God send! I work full time but with

the 2 caregivers, my husband, 2 sons and my sister we have been able

to keep it together. This is a great group. Before I found it, I

felt like my dad was a freak or something. Nobody had ever heard of

the disease. Now, I can come here, and everyone knows just how I

feel. The frustration, anger, fear, what ever I am feeling, either

someone else feels it or has felt it too. You will have a wide

range of emotion but remember, it isn't all bad. I have learned to

really treasure every good moment that I can get with my dad. He

isn't the same dad but, he still has some good days and I treasure

those. I tuck them away in my memory and think about those days

when the times get rough. Take care and come here often. It is a

great source of info and comfort.

Donna P.

> Hi I'm new here. My name is Carole. I've been caring for my Dad

for

> about a year. He is 77 on March 10 and has recently been diagnosed

with

> diffused LBD. Mom died about three years ago. I recently

divorced. I

> sold my home and built a small home , when it suddenly became

apparent

> that Dad couldn't stay alone. My sister runs an active business

and

> helps out as she can. My brother lives in Costa Rica nuff said. I

guess

> I just need people to talk to about this. THe frustration,

sadness,

> sometimes anger. Thanks, and God bless.

March 2, 2005

Hello Carol,

I am also new here, I just found this list last week.

My mom is 79. Dad died 2.5 years ago, here at home,

with dignity. Mom had been the primary Caregiver for

Dad, nearly 10 years.

Shortly after Dad's passing, Mom's disease went into a

full throttle dive. We leveled out for a while, but

with frequent and increasing confusion. For nearly a

year now, Mom has been not been able to walk, without

assistance: Not even with the aid of her walker, as

the disease took her away her balance. She had a

series of falls prior to that. With me for support,

Mom continues to walk on the tread mill, several

times, every day.

More than half of the time now, Mom has confused me

with Dad, and then speaks about me in 3rd person. Mom

sees and speaks with Dad a lot.

Perhaps when the time feels right, you may choose to

get some help to come in, like the County Nurse, and

the Home Health Aid. Sometimes having an outsider

looking over your shoulder feels like a mixed

blessing, but simply having the extra faces that

regularly come in to see my Mom helps both of us. It

is a little like a visit from a friend for pay.

Funny, my mother has had so many dear and wonderful

friends, but they don't come to visit now. Probably

they don't know what to say. I have invited some of

her old friends to visit, but months go by without

anyone but family and the twice a week visit from the

health aid.

Perhaps the last time the church ladies visited, Mom

had a confused day, or started into her visions.

I don't want the home health aid to worry about

cleaning, or that kind of stuff, I just want her to

give Mom some personal care and attention. Sometimes

a bath, or having her hair fussed with, then just sit

and " be her friend " for a few minutes, so I can get a

few minutes outside without worry.

My mom was a wiz at most everything. Until a couple

years ago, she re-programmed her own TV controller

when Dad got it messed up, but now, on confused days,

she can't figure the sound / volume, or make her

power chair go up or down,

Mom has a favorite video of a Norwegian Choir that she

has probably watched 200 times in the last year. We

have some really good days. Today is a good day.

Last week was a good week.

Dann

--- Carol A Hinckley

wrote:

---------------------------------

Hi I'm new here. My name is Carole. I've been caring

for my Dad for about a year. <snip>

March 2, 2005

Hi Dann, Your words all ring true to me! I feel so fortunate to find

all you guys. My Dad still walks unaided, but his balance is not too

good. He still likes to stay busy, and on good days he can wash

dishes (and he puts them away in the most interesting places!), make

his bed or straighten up. He can't remember how to operate the

dishwasher, clothes washer and can't get ice from the dispenser in the

fridge door, but God bless him, he gets up at the same time every AM

(before me) and goes to the kitchen and follows instructions he wrote

to himself about 6 months ago (he was better, even then) and makes us

a pot of coffee. I have tried writing instructions for other things,

but he gets frustrated and would rather stay with what he knows. He

still has the ability to make me laugh, and I see his pleasure when

that happens. We are both in good company ..I am fortunate that he

was always such an amazing person and Dad, it makes this all a little

easier. sometimes he just looks at me and pats me on the hand and I

know just what he means to say to me. Take care and God bless. Carole

March 7, 2005

carol, i too am a daughter caregiver for my father 70, my hubby and i moved

here jan 2003, and dad was diag may 2004, it is a tough time, but i can relate

to the hand patting and the feeling that it says it all as that is what dad and

i have, i just lost a dog of 16 years sat nite and dad has extreme diff

communicating at times, but today he patted and stroked my arm and said its ok

to cry, baby, i love you. that the most in one sentence that dad has said in a

while so i was glad he too is sad and it has brought death to the surface and

dad again started talking about dying soon. so that saddens me, but i can

understand how helpless he must feel with lbd. take care and keep up the good

work sharon m pensacola fl

Date: 2005/03/02 Wed PM 01:04:01 EST

To: LBDcaregivers

Subject: new here