Re: imogene/sharon m

[Guest guest]

Thank you, Sharon M. I do get some help. One daughter comes over pretty

regular to vacuum for me, and do a little cleaning. I have Chronic Eosenophelia

Pneumonia,

plus a myriad of other things, so yes, I need help.

Yesterday one daughter came, and assured us that she would care of her

father when necessary. She is a nurse. I have a son in law, and a son, that

come

and do repairs, when they can. I have a genius grandson that keeps my computer

going.

I have other family that I could call on if necessary. So, no, I am not

trying to do this alone. My kids are already in their 50's.

Imogene

In a message dated 3/28/2006 12:59:16 AM Central Standard Time,

LadySmilingAtU2@... writes:

imogene, you are a remarkable woman with lots of insight, asking for

guidance from the group and putting your own life aside to take care of the man

you

love. please be sure to take cxare of yourself first and ask for help,

dont try to do it alone, whether hospice or visiting nurses, whatever, you

must

take care of yourself first and foremost so you can continue helping him

like you do,k sendingyou strengtha nd prayers to help you along this path hugs

sharon m

From: Iward27663@...

Date: 2006/03/24 Fri PM 02:37:31 EST

To: LBDcaregivers

Subject: Re: RE: TOOK MAMA TO NEW DOC

Yesterday was a bad day for my husband. Confused, stiff, almost dragging,

and stooped over some. We had to go to the grocery store and I made sure I

was

with him. He saw squirrels playing in the house all day, and is seeing them

again today. At the table, for lunch, he told one to go away. He said he

has

seen them all morning.

We talked and I reassured him with love. He thanked me for being here for

him, and cried. He is such a great person, how could a woman NOT be there

for

him? I HATE this horrible disease. I can't believe what he has been through

since 1980, with his heart, (two open heart surgeries) and now this!!!

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 3/24/2006 7:44:51 AM Central Standard Time,

mercygracey@... writes:

THE DOC SAID THAT SHE HAD DRUG-INDUCED PARKINSON'S AND SHE THOUGHT SHE

COULDN'T SWALLOW AND WAS SOOO STIFF HER HEAD WAS DRAWN DOWN. WALKED BENT

OVER.

YESTERDAY WAS DAY 3 OFF RESPIRADOL AND SHE STOOD UP STRAIGHT BUT HER HEAD IS

STILL DRAWN. IT SHOULD TAKE A FEW WEEKS FOR IT TO GET OUT OF HER SYSTEM.

SHE

WAS HAPPY AND SEEMED TO FEEL BETTER ALREADY. SSHE WAS TALKING SMILING, AND

ATE SLIGHTLY BETTER.

Iward27663@... wrote:

Thanks for telling your story about your mother, Midge. My husband has

been

put on Risperdal and is complaining about stiffness, and shortness of

breath.

He won't let me call the doctor. I think he just want s another Doctor. I

need to start looking in earnest.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 3/23/2006 8:01:37 AM Central Standard Time,

mercygracey@... writes:

HI EVERYONE,

I TOOK MAMA TO A GERIATRIC NEUROLOGIST WED. AND SHE IS VERY FAMILIAR WITH

LBD. REMEMBER I WAS QUESTIONING THE " RESPIRADOL. " ALSO HER PREVIOUS DOC

BEFORE

SHE WAS HOSPITALIZED MOVED TO UTAH. SO HER MD IS THE ONE WHO PUT HER IN

THE

HOSP. FOR UTI AND WHILE THERE A NEW GERIATRIC PHSY TOOK HER OFF ALL HER

MEDS

THAT WERE STOPPING THE PROGRESSION OF LBD AS I PROTESTED HIM DOING THIS.

WELL, I TOOK MAMA TO THE NEW DOC DR. LINDY HARRELL AT UAB/KIRKLIN CLINIC

AND SHE

SAID MAMA HAS DRUG INDUCED PARKINSON'S AND TO GET HER OFF THE RESPERADOL

IMMEDIATELY. AND THAT SHE SHOULDN'T HAVE BEEN TAKEN OFF THE ARICEPT BUT

THERE

IS NO WAY TO GO BACK AND CHANGED IT NOW. NO USE IN STARTING IT BACK SHE

HAS

ALREADY PROGRESSED TO MUCH. AND NOW ALL WE CAN DO IS TRY AND CONTROL THE

HALLUCINATIONS WITH SEROQUEL IF NEEDED. AND HELP HER SLEEP GOOD. THE DOC

HOPES

THAT GETTING HER OFF THE RESPIRADOL THAT SHE WILL NOT BE STIFF AND SHE' BE

ABLE

TO SWALLOW BETTER AND EAT MORE. MAYBE SHE'LL GET MORE MOBILE AGAIN. BUT

THAT'S ABOUT ALL WE CAN DO NOW. I REALLY WISH I HADN'T TAKEN HER TO THE

HOSPITAL AND JUST WAITED TO TAKE HER TO THE NEW DOC BUT COULDA SHOULDA

WOULDA.

WE SUPPOSED TO BE ABLE TO TRUST DOCS BUT I AM KICKING MYSELF NOW..GOD BE

WITH

US. THANKS MIDGE

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

[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

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

YAHOO! GROUPS LINKS

Visit your group " LBDcaregivers " on the web.

[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

[Guest guest]

i am so glad to hear that you are getting help, i didnt ask for help or demand

that i get help until it put me in the hosp for 6 weeks and unfortuatly dad

went into the hosp the day i came home and he never made it back from the

nursing home. so the last 4 months of his life we were aprart more than we were

together, so please take it from me, take care of YOU FIRST. hugs sharon m

From: Iward27663@...

Date: 2006/03/28 Tue AM 10:55:20 EST

To: LBDcaregivers

Subject: Re: imogene/sharon m

Thank you, Sharon M. I do get some help. One daughter comes over pretty

regular to vacuum for me, and do a little cleaning. I have Chronic Eosenophelia

Pneumonia,

plus a myriad of other things, so yes, I need help.

Yesterday one daughter came, and assured us that she would care of her

father when necessary. She is a nurse. I have a son in law, and a son, that

come

and do repairs, when they can. I have a genius grandson that keeps my computer

going.

I have other family that I could call on if necessary. So, no, I am not

trying to do this alone. My kids are already in their 50's.

Imogene

In a message dated 3/28/2006 12:59:16 AM Central Standard Time,

LadySmilingAtU2@... writes:

imogene, you are a remarkable woman with lots of insight, asking for

guidance from the group and putting your own life aside to take care of the man

you

love. please be sure to take cxare of yourself first and ask for help,

dont try to do it alone, whether hospice or visiting nurses, whatever, you

must

take care of yourself first and foremost so you can continue helping him

like you do,k sendingyou strengtha nd prayers to help you along this path hugs

sharon m

From: Iward27663@...

Date: 2006/03/24 Fri PM 02:37:31 EST

To: LBDcaregivers

Subject: Re: RE: TOOK MAMA TO NEW DOC

Yesterday was a bad day for my husband. Confused, stiff, almost dragging,

and stooped over some. We had to go to the grocery store and I made sure I

was

with him. He saw squirrels playing in the house all day, and is seeing them

again today. At the table, for lunch, he told one to go away. He said he

has

seen them all morning.

We talked and I reassured him with love. He thanked me for being here for

him, and cried. He is such a great person, how could a woman NOT be there

for

him? I HATE this horrible disease. I can't believe what he has been through

since 1980, with his heart, (two open heart surgeries) and now this!!!

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 3/24/2006 7:44:51 AM Central Standard Time,

mercygracey@... writes:

THE DOC SAID THAT SHE HAD DRUG-INDUCED PARKINSON'S AND SHE THOUGHT SHE

COULDN'T SWALLOW AND WAS SOOO STIFF HER HEAD WAS DRAWN DOWN. WALKED BENT

OVER.

YESTERDAY WAS DAY 3 OFF RESPIRADOL AND SHE STOOD UP STRAIGHT BUT HER HEAD IS

STILL DRAWN. IT SHOULD TAKE A FEW WEEKS FOR IT TO GET OUT OF HER SYSTEM.

SHE

WAS HAPPY AND SEEMED TO FEEL BETTER ALREADY. SSHE WAS TALKING SMILING, AND

ATE SLIGHTLY BETTER.

Iward27663@... wrote:

Thanks for telling your story about your mother, Midge. My husband has

been

put on Risperdal and is complaining about stiffness, and shortness of

breath.

He won't let me call the doctor. I think he just want s another Doctor. I

need to start looking in earnest.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 3/23/2006 8:01:37 AM Central Standard Time,

mercygracey@... writes:

HI EVERYONE,

I TOOK MAMA TO A GERIATRIC NEUROLOGIST WED. AND SHE IS VERY FAMILIAR WITH

LBD. REMEMBER I WAS QUESTIONING THE " RESPIRADOL. " ALSO HER PREVIOUS DOC

BEFORE

SHE WAS HOSPITALIZED MOVED TO UTAH. SO HER MD IS THE ONE WHO PUT HER IN

THE

HOSP. FOR UTI AND WHILE THERE A NEW GERIATRIC PHSY TOOK HER OFF ALL HER

MEDS

THAT WERE STOPPING THE PROGRESSION OF LBD AS I PROTESTED HIM DOING THIS.

WELL, I TOOK MAMA TO THE NEW DOC DR. LINDY HARRELL AT UAB/KIRKLIN CLINIC

AND SHE

SAID MAMA HAS DRUG INDUCED PARKINSON'S AND TO GET HER OFF THE RESPERADOL

IMMEDIATELY. AND THAT SHE SHOULDN'T HAVE BEEN TAKEN OFF THE ARICEPT BUT

THERE

IS NO WAY TO GO BACK AND CHANGED IT NOW. NO USE IN STARTING IT BACK SHE

HAS

ALREADY PROGRESSED TO MUCH. AND NOW ALL WE CAN DO IS TRY AND CONTROL THE

HALLUCINATIONS WITH SEROQUEL IF NEEDED. AND HELP HER SLEEP GOOD. THE DOC

HOPES

THAT GETTING HER OFF THE RESPIRADOL THAT SHE WILL NOT BE STIFF AND SHE' BE

ABLE

TO SWALLOW BETTER AND EAT MORE. MAYBE SHE'LL GET MORE MOBILE AGAIN. BUT

THAT'S ABOUT ALL WE CAN DO NOW. I REALLY WISH I HADN'T TAKEN HER TO THE

HOSPITAL AND JUST WAITED TO TAKE HER TO THE NEW DOC BUT COULDA SHOULDA

WOULDA.

WE SUPPOSED TO BE ABLE TO TRUST DOCS BUT I AM KICKING MYSELF NOW..GOD BE

WITH

US. THANKS MIDGE

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

[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

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

YAHOO! GROUPS LINKS

Visit your group " LBDcaregivers " on the web.

[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

[Guest guest]

great, you keep searching and researching, and you will find a good

understanding compassionate doctor who knows all about lbd. hugs sharon m

From: Iward27663@...

Date: 2006/03/29 Wed PM 12:33:22 EST

To: LBDcaregivers

Subject: Re: hullucinations

Sharon M. We are not giving up on finding a good Doctor. We will see our

Primary Care Doctor (who is helpful and kind) on April 5th, and he can tell us

who to see, or actually refer us. But, in the mean time we are doing some

research on our own.

Imogene

In a message dated 3/28/2006 9:22:44 PM Central Standard Time,

LadySmilingAtU2@... writes:

imogene,

some of the listed symptoms could be drug reaction or even a combination of

things as well as lbd, absolutely change doctors, that doctors is a horses'

rear end if you ask me, and i am sure your husband which would be horrified

and put the doctor in his place, keep lookig for the right doctor, we are

lucky we have a wonderful md who is from hungary and has had doctor professors

that taughthim caring and tenderness. he is a remarkable man and i still go

ot him. keep a journal of all the changes, keep it daily note good and bad

if possible make copies of it several days before don's appt (by the way my

wonderful husband is donnie - and he is my gift from God) keep plugging along

and i am sending you strength to help you in your search to find a doctor

worthy of caring for you and Don hugs sharon m

From: Iward27663@...

Date: 2006/03/28 Tue AM 03:12:01 EST

To: LBDcaregivers

Subject: Re: hullucinations

Sharon M, Thank you for your kind letter. My husband loves to listen to

music. When he heard daddy's music he was just reminded of the heart

wrenching

experience we went through when we lost daddy. That is why he cried. He

loved

daddy dearly.

I had a talk with Don's doctor today, and he was a very curt, and rude. I

only talked with him for a couple of minutes.

I had a list made up of questions that I read off to his assistant, and she

in turn had given the list to the doctor. He didn't answer any of my

questions, even though I tried to get answers.

The doctor said my husband should see his Primary care physician for his

problems.

I said these problems only started after he started taking Risperdal. The

doctor still wanted my husband to double his dose, and I told him that we

were

afraid to do that. So he said take 1/2 in the morning and a whole pill at

night.

I told him that I had been conversing with a doctor on an Alzheimer's list,

and was told from all my husband's symptoms that they strongly suggested my

husband had Lewey Body disease.

The Doctor said, " Didn't we have this conversation before? " I said, " Yes,

but you didn't tell us what you think. " He said, " Your husband Might have

LBD. "

Then he hung up on me.

We are going to find another doctor for sure. My phone is loud because of

my

poor hearing, and so of course my husband heard all of our conversation.

Sure made him angry the way the Doctor acted. He hasn't liked him from the

beginning, but now he said we won't be staying with that doctor.

My husband's new symptoms are;

Short of breath (he already has severe heart trouble)

Bad spells when he squats or bends over

Dizzy

Staggering walk

Nasal drip

Drooling

More hallucinations. Now he has squirrels and cats and always has visitors

at night

Becoming incontinent

These symptoms came up after the medication was started about three weeks

ago.

But, it is obvious that we will not get any help from that doctor. Don is

seeing his Cardiologist soon, and we have an apt to see our primary care

doctor

next week.

I am glad I have a place to discuss my concerns to others that understand.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

In a message dated 3/27/2006 11:33:51 PM Central Standard Time,

LadySmilingAtU2@... writes:

imogene,

what a heart wrenching story of such love, forgive me for not responding

sooner as i am usually a very talkative former caregiver, my daddy passed

away

in sept after we were here almost 3 years taking care of him 24/7 if music

isnt good to calm your husband, how about some old cartoons, felix the

cat,

old mickey mouse, disneys fantasia, where the stories are short and comical

and dont require alot of thought that each frame or 2 is a story in itslef.

you

can find ceollections of cartoons in some stores, like walmart *sorry i

dont

recall where you are from * they ahve something like 50 hours of cartoons

on

a dvd /vhs set. or even some silent movies or even collectoins of animal

programs like wild kingdom, something just to keep his attention for a few

minutes and if he looks away or wwanders like our lbd loved ones tend to do

just

a thought hugs sharon m

From: Iward27663@...

Date: 2006/03/20 Mon PM 08:18:39 EST

To: LBDcaregivers

Subject: Re: hullucinations

My father's music toughed a nerve in my husband, because everyone loved my

father, and his music. I think he played better than Chet Atkins. He could

make some of his tunes sound like two people playing at once. So

beautiful!

Anyway. We were on vacation, when daddy HAD to go fishing (commercial with

nets) one night. I had fished with him for several years, and grew to love

the

fine man that he was. Well, --- The next day, he called and asked Don to

pick him up at the fishhouse. He barely got up the stairs at the house,

and

came in and threw his hat on the freezer like he always did. But, Daddy

was

white as a sheet. He was shaky, and obviously very sick.

When no one else was there, he said, " Imogene it feels as if a truck has

hit

my chest. " I said, " Daddy you are having a heart attack, please lets get

you to the hospital. " He refused. He took a bath, and when he came out I

helped

him pull down his undershirt. He said he would be fine when Don and his

wife

got some Nitro, as they were off doing. I begged, Daddy please let us get

you to a hospital. " He still wouldn't go. He said, " I can lay here and rest

as

well as I can at the hospital. "

He talked about the biggest flounder he had ever caught, and acted like

nothing was really wrong. He told me privately he didn't want to worry his

wife.

He obviously thought he would pull through.

He laid down on a bed in the next room. Don heard a gurgle, and we rushed

into the room to see daddy was purple and unconscious. We did mouth to

mouth

resuscitation, and the whole nine yards. We had taken CPR lessons, because

of

my Don's heart. We could not save him.

It was a horrible traumatic experience. It took me more that three years

to

get over it. On the other hand, my mother was so much older, and had

Dementia, so it wasn't as hard to take. We all had long enough time to

adjust to the

outcome. By then, I had come to accept death as an eventual thing. Daddy

was

only 70. It took us totally by surprise, when we were on vacation to see

him.

It was a horrible thing to go through.

Daddy was full of fun and music, yet a very spiritual minded person. Don

loved him dearly. The music reminded Don of the terrible trauma we

experienced

when Daddy died. It shook him up no end. Don had to make all the funeral

arrangements. My siblings were out of town. That is why Don cried

uncontrollably

for a few minutes.

I had to turn off the music, and soothe my wonderful loving, and tender,

husband, who loved my daddy dearly, and went through a terrible trauma

with

me.

The music was a reminder.

Imogene

In a message dated 3/20/2006 6:58:42 AM Central Standard Time,

lndedge@... writes:

So sorry to hear that your husband had had a bad day today. Does he have

many bad days? It seems that my father in law now has more bad ones than

good

ones, mainly due to the " visitors " . In re to the tape of your dad playing

the guitar do you think it was the fact that your dad was playing that

touched

your husband or the music? I'm wondering if music may help to calm my

father in law when he becomes agitated

Iward27663@... wrote:

My dear husband has hallucinations, but not as bad you describe. He

usually

has them at night, and he can have as many as 4 or 5 visitors at a time.

But,

he has seen cats in the house as well as a tiger one time. He is never

afraid. One time he " woke up " to find himself fighting one. He was sitting

on the

end of the bed flailing his arms. He usually tells them to " go home " and

they

disappear.

He had a bad day today. Got very angry with someone on the computer who

was

terribly ugly, and out of line, then this afternoon I put on a tape of my

daddy playing the guitar (he played beautifully) and My husband sat here

crying

like a baby. It was a hard day all the way around. He said he guessed he

needed to cry.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May

In a message dated 3/19/2006 11:42:50 PM Central Standard Time,

lndedge@... writes:

Can someone please help me? My father in law has been recently diagnosed

with Lewy Body and my mother in law is finding it very difficult to cope

with

the hullicinations. She is managing very well in all other aspects of

caring

for him but not with the hullicinations. On some days he has " visitors "

all

day long sometimes as many as 6 people at a time. Things have gotten so

bad

that he won't allow my mother in law to sit in her nightie and he doesn't

like her getting undressed because there are so many people in the house.

He

keeps asking to go to the other house where there are no visitors - we

have

no

idea what house he is talking about. It isn't a house they have lived in

before. He gets very upset and agitated that the " visitors " won't go and

that

we don't see them. Does have anyone else have a similar experience or

any

advice to help my mother in law deal with it?

[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

Caregiver for my True Texas Gentleman husband of 35 years. He has AD and

possibly LBD, is Taking Aricept and Risperdal. Age 72 in May.

[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

Yahoo! Groups Links

a smile a day, keeps the meanies away!!!!

Welcome to LBDcaregivers.

Yahoo! Groups Links

[Non-text portions of this message have been removed]

Welcome to LBDcaregivers.

Yahoo! Groups Links

a smile a day, keeps the meanies away!!!!

Welcome to LBDcaregivers.