Re: Just devistated

[Guest guest]

, thank you so much for your prompt reply. I have been sitting here

just looking at this computer waiting for a reply. I know you are right. I

am still a practicing catholic and have 3 young children who go to Catholic

school. But it is so hard to believe and be loving right now, because I am

so angry. My aunt's best friends father (did that make sense) lived only 1

year after diagnosis. I know the life expectancy varies, but I want more

time. I feel so selffish saying that. My dad has always been my cheerleader

in life, pushing me to rise about the hard time " make lemonade out of the

lemons life hands you " , he has always helped me--I feel so guilty I can't

help him. He has no idea he has this diagnosis, nor what the prognosis is.

He knows he has parkinson's disease, with a dementia component. He relies on

me to help him stay informed with his health since I work in the field. When

he asked me what it meant when he got the letter, I lied to him. I told him

that dementia is just a fancy name for memory problems, and that's all. I

don't see the need to worry him over this. He has made me promise him that

he would not end up like my grandmom who has Alzheimer's when he was

diagnosed with the Parkinson's. I assured him he would not. But he is so

scared and insecure, he keeps asking me to promise him, so I continue to lie.

I feel so horrible. But I can live with this easier than taking away what

little time he spends not worrying. I was in church on sunday with my

children and I begged God to take this away from him or to take him very

suddenly another way. Am I completely losing my mind asking for such things.

I appreciate your kind words and have printed them and will keep them with

me to help me remember each day that God has not done this to my father. The

rationale side of me already know that, but the irrationale side of me and my

sisters, as well, as having nerveous breakdowns. Please, in the future, if

your dad has speech, language, and swallowing problems--let me know. These

are areas I can at least deal with and am very knowledgeable about when it

comes to dementia. Take care,

[Guest guest]

, thank you so much for your prompt reply. I have been sitting here

just looking at this computer waiting for a reply. I know you are right. I

am still a practicing catholic and have 3 young children who go to Catholic

school. But it is so hard to believe and be loving right now, because I am

so angry. My aunt's best friends father (did that make sense) lived only 1

year after diagnosis. I know the life expectancy varies, but I want more

time. I feel so selffish saying that. My dad has always been my cheerleader

in life, pushing me to rise about the hard time " make lemonade out of the

lemons life hands you " , he has always helped me--I feel so guilty I can't

help him. He has no idea he has this diagnosis, nor what the prognosis is.

He knows he has parkinson's disease, with a dementia component. He relies on

me to help him stay informed with his health since I work in the field. When

he asked me what it meant when he got the letter, I lied to him. I told him

that dementia is just a fancy name for memory problems, and that's all. I

don't see the need to worry him over this. He has made me promise him that

he would not end up like my grandmom who has Alzheimer's when he was

diagnosed with the Parkinson's. I assured him he would not. But he is so

scared and insecure, he keeps asking me to promise him, so I continue to lie.

I feel so horrible. But I can live with this easier than taking away what

little time he spends not worrying. I was in church on sunday with my

children and I begged God to take this away from him or to take him very

suddenly another way. Am I completely losing my mind asking for such things.

I appreciate your kind words and have printed them and will keep them with

me to help me remember each day that God has not done this to my father. The

rationale side of me already know that, but the irrationale side of me and my

sisters, as well, as having nerveous breakdowns. Please, in the future, if

your dad has speech, language, and swallowing problems--let me know. These

are areas I can at least deal with and am very knowledgeable about when it

comes to dementia. Take care,

[Guest guest]

Hello, .

I can hear the devastation, frustration and anger in your post. You are

dealing with the same things so many of us has - disbelief, timelines, care

scheduling, etc. We have each answered as best we can in our own way. There

aren't any viable time lines for this disease as there are with Alzheimer's,

to my knowledge. When my husband was diagnosed 4+ yrs ago the life

expectancy average was 7 yrs, with global dementia setting in prior to that.

Further studies with larger populations have shown that not to be true and

life expectancy is much longer. So is there a longer time line for decline,

although that is not true for every individual I think the only sure thing

we can say about this disease is that there are no one-size-fits-all answers.

Take that trip in November if your folks are up to it. But be prepared for

your dad to possibly become somewhat disoriented and confused about being in

a new place. If he has success with some of the medications he may function

well for some time, though.

All the best, and welcome aboard,

Cheryl

[Guest guest]

In a message dated 8/6/02 8:55:48 PM Central Daylight Time, MLaSalGon@...

writes:

> Please, in the future, if your dad has speech, language, and swallowing

> problems--let me know.

You are blessed to have experience in this area, , as many patients

develop speech, language, and swallowing problems. Word finding, misuse,

pronunciation, garbling, worm their way in for awhile, then go away, then

come back . . Swallowing can be a problem, too, and if your dad develops

the severe Parkinson posture that my husband has you will start to worry

about everything being pinched off. Then PT, OT, massage therapy, braces all

help.

Cheryl

[Guest guest]

Cheryl and , thanks again for your replies. I know what you are telling

me makes alot of sense. I am hoping that my family and I can get together

soon to decide what we will do to handle this ourselves, as well as, the best

way to handle this with my dad. We have a family meeting planned for either

this or next Sunday. I pray we make the right decisions, I will keep you

posted. Good night, talk to you soon.

[Guest guest]

and ,

The Cognitive Neurologist gave us the diagnosis simultaneously. He didn't go

into a lot of details, though. I had to research it. The Parkinsonian

features are what my husband dwelt on. I sometimes wondered if he really

understood the diagnosis or was in denial, for a long, long time. We needed

to update our wills and directives and POAs, so the issue came up during

that, but otherwise, I don't mention the dementia. But when things happen it

is helpful to be able to say " it's the disease. " Sometimes it is the

movement disorder, sometimes the spatial disorientation, sometimes that he

can't think things through and knows it. I'm not trying to tell you that

this is what you should do with your dads - you have to decide what is right

for you. But I agree, , that the patient has the right to know. I for

one would be very upset to learn that my family was withholding the truth of

my condition from me. Anyway, this is what works in our house.

Glad to have you with us, and wishing you both well as you adjust to the

horrors of this monster,

Cheryl

[Guest guest]

Hi ,

You and I have things in common. I too have a Dad who was just diagnosed

last week with LBD. From what you describe, I believe he is probably in

a similar stage as your Dad. I too was raised in a Catholic family.

Still am Catholic. Without faith, there would be nothing to help get us

through this. I can't help you on the disease

portion of your e-mail. I'm new to this too. I am reading like crazy and

trying to find out as much as I can about this terrible disease. But I

sure hope that I can help you on the God issue.

You wrote:

" What kind of God rewards his children for a lifetime of hard work with

such a disease? "

As a Christian, try and remember one crucial thing. God doesn't sit up

in heaven and hand out these terrible diseases to loving fathers on

earth. Only good things come from God. In fact ALL good things come from

God! Can God intervene? Absolutely. He has the amazing power to perform

miracles. Don't believe it? Look in the mirror. You're a miracle aren't

you? Isn't your Dad a miracle? Well who created you and your Dad? God,

of course.

Here's the catch. God gave us free will because he didn't want to force

us to love him. He wanted our love for him to be sincere. But along with

free will comes the ugliness of human nature. Because of our fallen

nature, all too often, we choose to turn our backs on God and leave him

out of the important stuff. This attitude has brought on the human

condition. When you look around and see poverty, disease, famine, it is

important to know that all these things are man-made. Not God-made.

Sure God can stop our suffering. But God loves every single one of us.

And he wants us to be with him in the end. We can't do that unless we

get it right. After all, heaven is a place of nirvana, perfection. How

perfect would it be if there were gossip and backstabbing in heaven? Get

my point? God wants us to master 2 things: (1) Love God with all our

hearts, and (2) Love our neighbors as ourselves. Now that first one is a

no-brainer. But I personally struggle a whole lot with the second one.

I don't know about you , but I have some pretty unlovable neighbors in

my life. They are hard to love!! How do we get better at loving our

neighbors? By becoming a more compassionate person. How do we become

more compassionate? By going thru these difficult times. By helping

those we love who are suffering, and by suffering ourselves. I know it

doesn't sound like much fun. But you are young and you have a lot of

years left on this planet. Believe me when I say that years from now

when you look back on the suffering you endured, and the compassion that

you had for others who suffered, you will like the person you see in the

mirror a whole bunch! So try not to blame God, pray for your brothers,

and take up your cross and make this an opportunity to become the most

compassionate person you can be. I have a feeling you're pretty darn

compassionate to begin with. I will pray for you and your family.

Remember that God has a plan for you!! And He won't let you down.

God bless you and your family,

MLaSalGon@... wrote:

> Hello, my name is . My father has just been diagnosed with

> LBD. He is

> only 64, and father of 10, grandfather to18. My youngest brother is

> 20. I

> am a Director of Rehab in a skilled nursing facility, as well as, a

> speech-language pathologist. I have spent almost 10 years working in

> long-term care and have never come across this disease. Needless to

> say, I

> am devistated. And mad as hell!!!!! Not to mention scared and in

> disbelief.

> I want to believe so much that this is a mistake, but the more I read

> about

> this god-aweful disease, the more I know that they are describing my dad.

> There are so many questions I want answered, and no one has the

> answer. For

> instance, how do I know what stage he is in--how long does he have. I

> know I

> should feel more fortunate because I work in the field. I have

> already had

> the conversations about advance directives and had these put in place

> when he

> was healthy, because I have seen things happen to people suddenly and

> have

> watched families struggle. I have a large family and support systems. I

> think my dad is in an earlier stage. He has physical symptoms of a

> moderate

> stage Parkinson's disease, although he is very depressed, insecure,

> paranoid,

> and hallucinating. As I type these words, I cannot believe I am talking

> about my dad. He was the most handsome and strongest man I have ever

> met.

> And a good, catholic father--working 2 jobs to raise us all. What

> kind of

> god rewards his children for a lifetime of hard work with such a

> disease. I

> am going to the Neurologist with him this week, basically, they never

> described this to him--they sent a letter in the mail. HOW

> PROFESSIONAL! I

> am greatful I have 5 other sisters, we are getting together to discuss

> how we

> can change our home and work schedules to devote one day a week to him

> and my

> mom. The boys are in denial at this point, and that annoys me even

> more. I

> have a trip planned to take my parents to DisneyWorld with me in

> November and

> we are driving. I don't know if this is the best decision for him.

> But they

> have never been anywhere besides the beach because they were always

> busy or

> broke raising us kids. I need guidance. If anyone can help me, I

> would so

> greatly appreciate it. Thanks,

>

>

[Guest guest]

Hi ,

You and I have things in common. I too have a Dad who was just diagnosed

last week with LBD. From what you describe, I believe he is probably in

a similar stage as your Dad. I too was raised in a Catholic family.

Still am Catholic. Without faith, there would be nothing to help get us

through this. I can't help you on the disease

portion of your e-mail. I'm new to this too. I am reading like crazy and

trying to find out as much as I can about this terrible disease. But I

sure hope that I can help you on the God issue.

You wrote:

" What kind of God rewards his children for a lifetime of hard work with

such a disease? "

As a Christian, try and remember one crucial thing. God doesn't sit up

in heaven and hand out these terrible diseases to loving fathers on

earth. Only good things come from God. In fact ALL good things come from

God! Can God intervene? Absolutely. He has the amazing power to perform

miracles. Don't believe it? Look in the mirror. You're a miracle aren't

you? Isn't your Dad a miracle? Well who created you and your Dad? God,

of course.

Here's the catch. God gave us free will because he didn't want to force

us to love him. He wanted our love for him to be sincere. But along with

free will comes the ugliness of human nature. Because of our fallen

nature, all too often, we choose to turn our backs on God and leave him

out of the important stuff. This attitude has brought on the human

condition. When you look around and see poverty, disease, famine, it is

important to know that all these things are man-made. Not God-made.

Sure God can stop our suffering. But God loves every single one of us.

And he wants us to be with him in the end. We can't do that unless we

get it right. After all, heaven is a place of nirvana, perfection. How

perfect would it be if there were gossip and backstabbing in heaven? Get

my point? God wants us to master 2 things: (1) Love God with all our

hearts, and (2) Love our neighbors as ourselves. Now that first one is a

no-brainer. But I personally struggle a whole lot with the second one.

I don't know about you , but I have some pretty unlovable neighbors in

my life. They are hard to love!! How do we get better at loving our

neighbors? By becoming a more compassionate person. How do we become

more compassionate? By going thru these difficult times. By helping

those we love who are suffering, and by suffering ourselves. I know it

doesn't sound like much fun. But you are young and you have a lot of

years left on this planet. Believe me when I say that years from now

when you look back on the suffering you endured, and the compassion that

you had for others who suffered, you will like the person you see in the

mirror a whole bunch! So try not to blame God, pray for your brothers,

and take up your cross and make this an opportunity to become the most

compassionate person you can be. I have a feeling you're pretty darn

compassionate to begin with. I will pray for you and your family.

Remember that God has a plan for you!! And He won't let you down.

God bless you and your family,

MLaSalGon@... wrote:

> Hello, my name is . My father has just been diagnosed with

> LBD. He is

> only 64, and father of 10, grandfather to18. My youngest brother is

> 20. I

> am a Director of Rehab in a skilled nursing facility, as well as, a

> speech-language pathologist. I have spent almost 10 years working in

> long-term care and have never come across this disease. Needless to

> say, I

> am devistated. And mad as hell!!!!! Not to mention scared and in

> disbelief.

> I want to believe so much that this is a mistake, but the more I read

> about

> this god-aweful disease, the more I know that they are describing my dad.

> There are so many questions I want answered, and no one has the

> answer. For

> instance, how do I know what stage he is in--how long does he have. I

> know I

> should feel more fortunate because I work in the field. I have

> already had

> the conversations about advance directives and had these put in place

> when he

> was healthy, because I have seen things happen to people suddenly and

> have

> watched families struggle. I have a large family and support systems. I

> think my dad is in an earlier stage. He has physical symptoms of a

> moderate

> stage Parkinson's disease, although he is very depressed, insecure,

> paranoid,

> and hallucinating. As I type these words, I cannot believe I am talking

> about my dad. He was the most handsome and strongest man I have ever

> met.

> And a good, catholic father--working 2 jobs to raise us all. What

> kind of

> god rewards his children for a lifetime of hard work with such a

> disease. I

> am going to the Neurologist with him this week, basically, they never

> described this to him--they sent a letter in the mail. HOW

> PROFESSIONAL! I

> am greatful I have 5 other sisters, we are getting together to discuss

> how we

> can change our home and work schedules to devote one day a week to him

> and my

> mom. The boys are in denial at this point, and that annoys me even

> more. I

> have a trip planned to take my parents to DisneyWorld with me in

> November and

> we are driving. I don't know if this is the best decision for him.

> But they

> have never been anywhere besides the beach because they were always

> busy or

> broke raising us kids. I need guidance. If anyone can help me, I

> would so

> greatly appreciate it. Thanks,

>

>

[Guest guest]

I feel for you very much . My Dad doesn't know the extent of his

diagnosis either. He was diagnosed 8 days ago in the doctors office.

Because he is deaf from an unrelated disease he had when he was 33 years

ago, the doctor spoke to my Mom. Mom pretty much told Dad what you told

your Dad. There's no denying the PD symptoms. They are pretty obvious.

Mom said that he has dimentia in addition. Dad asked if it was

alzheimers and Mom said no. I think Mom plans to give Dad more info as

soon as she has a better grasp herself. We've been going back and forth

on this and think probably telling him is best. Hardest, but best.

Here's why: (1) Dad has the right to spend whatever lucidity he has

left, the way he wishes. He may have unfinished business, people to

forgive, ask forgiveness, friends and family to see. If he knows that he

may not be all there at some point, it allows him to spend his lucid

time wisely. (2) Dad's a proud guy. He may want to make sure that Mom's

financial welfare is protected. It's not too late for him to be a part

of those decisions that will protect his wife of 45 years. (3) If it

weren't for the fact that he's deaf, he'd know anyway. The doctor would

have told him. It's probably not fair to to use his disability to hide

the truth. (4) He deserves to have his dignity. If we never tell him,

we'll all be whispering behind his back. (well - we'll probably be doing

a lot of that anyway, but you know what I mean.) (5) In his heart of

heart, he has to know. I mean, one minute he's making total sense

talking about interest rates and economics, then he completely loses his

train of thought and says " wait a minute " and runs out of the room like

he forgot to do something. A while later he slildes back into the room

like all is normal and doesn't resume the conversation because he can't

remember it. That must be awfully frightening for him. Especially when

no one is acknowledging this. He knows. He must know that we know.

Therefore, if we don't acknowledge it, he may be even more paranoid and

try to hide things for fear that we have " an agenda " and we are hiding

things.

I don't know if any of this is right. I too am so completely confused.

And I'm sure soon enough it doesn't matter if he knows or not because

he'll forget everything we tell him anyway. I'd hate to have to keep

giving him this news over and over again!! Once is enough ;-)

I just thought I'd share with you what me and my family have been

contemplating regarding telling Dad of his illness. I don't know if it

is the right or wrong answer and only you know your Dad. You may want to

go see your priest and see what he says. Incidentally, I went to see my

priest because I too was wishing God would take Dad in his sleep from

some other natural cause. It made me so guilty to be wishing he were

gone. I just don't want to see him suffer. And to tell you the truth,

I'm not looking forward to suffering myself either. Seeing Mom and Dad

go thru this will be suffering in and of itself. If it makes you feel

any better, the priest was very very helpful and made me feel much

better about these human feelings I was having.

Well , you and I will be going through this one together. I'm here.

MLaSalGon@... wrote:

> , thank you so much for your prompt reply. I have been sitting here

> just looking at this computer waiting for a reply. I know you are

> right. I

> am still a practicing catholic and have 3 young children who go to

> Catholic

> school. But it is so hard to believe and be loving right now, because

> I am

> so angry. My aunt's best friends father (did that make sense) lived

> only 1

> year after diagnosis. I know the life expectancy varies, but I want more

> time. I feel so selffish saying that. My dad has always been my

> cheerleader

> in life, pushing me to rise about the hard time " make lemonade out of the

> lemons life hands you " , he has always helped me--I feel so guilty I can't

> help him. He has no idea he has this diagnosis, nor what the

> prognosis is.

> He knows he has parkinson's disease, with a dementia component. He

> relies on

> me to help him stay informed with his health since I work in the

> field. When

> he asked me what it meant when he got the letter, I lied to him. I

> told him

> that dementia is just a fancy name for memory problems, and that's

> all. I

> don't see the need to worry him over this. He has made me promise him

> that

> he would not end up like my grandmom who has Alzheimer's when he was

> diagnosed with the Parkinson's. I assured him he would not. But he

> is so

> scared and insecure, he keeps asking me to promise him, so I continue

> to lie.

> I feel so horrible. But I can live with this easier than taking away

> what

> little time he spends not worrying. I was in church on sunday with my

> children and I begged God to take this away from him or to take him very

> suddenly another way. Am I completely losing my mind asking for such

> things.

> I appreciate your kind words and have printed them and will keep them

> with

> me to help me remember each day that God has not done this to my

> father. The

> rationale side of me already know that, but the irrationale side of me

> and my

> sisters, as well, as having nerveous breakdowns. Please, in the

> future, if

> your dad has speech, language, and swallowing problems--let me know.

> These

> are areas I can at least deal with and am very knowledgeable about

> when it

> comes to dementia. Take care,

>

>

[Guest guest]

Dear ,

The Out of Control feelings you are having, we have all been through.

How fortunate you can be caregiving a loving man. My 88 year old mom

who was with me for 3 years and the last year in a nh, was not very

loving to me and she continues to demonstrate that attitude to this day

in her dementia. Meanwhile I and my daughter feed her 2 times a day

because I am afraid the nurses and aides in this nh will do as they do

everyone else and she may not get to eat with her attitude. She is a

very difficult woman. How often I wish it could have been my dad who

died long ago of cancer and very suddenly. He would be so much easier

to care for because I could look past so much more because I know he

loved me.

There is a real good book written by a Rabbi called, " When Bad Things

Happen to Good People. " He struggled with his God also when his young

{12} son died. I can't remember how the boy died. The book is good.

I don't know how we get men involved in this. I had 3 sons who rarely

see their grandmother. They try and help me at home but sometimes I

need them to be with Mom so I get a break and asking hasn't helped that.

My daughter has been a constant support for the last 4 years on a daily

basis. I don't know know what I would do if she weren't helping.

I am in a very different place than you are. I have been dealing with

the problems for such a long time. And there are bad days I just want

to know when it will be over. When it all started I took it a day at a

time, because it was all I knew and didn't have this support group. It

has been one crisis after another for at least 4 years. And when it

started I didn't think it would last 6 months. Mom asked me 4 years ago

to help her die. She saw what was coming and didn't want to go on.

Each and every time I thought I didn't have another 3 months, I was

wrong.

I know I am not answering any of your questions. I am more trying to

share my experience with you.

You know your Dad would ask you to " make some lemonade. " And that is

all you can do. Be most patient with yourself. You will feel your way

through this like we all have because you have to and will have the

support of your sisters to do that. Laugh together, cry together, take

vacations without lots of expectations, {he may sit in a motel room the

whole time, like my mom did.} And remember all the love you feel. This

will probably go on much longer than you will eventually want it to go

on.

I keep asking, What am I suppose to be learning? I still haven't

figured it out.

Welcome to the " I don't want to be part of it, " group.

Donna

If you drink a diet soda with a candy bar, the calories in the candy bar

are canceled out by the diet soda.

[Guest guest]

Dear , All the feelings you express are ones which I have had, as well.

I am caring for my

husband who will be 64 in a couple of weeks. In two years he has gone from

being a strong, vital

man to someone who falls frequently, is painfully slow, has trouble getting in

and out of a chair, has

a strong tremor (really more like shaking), doesn't make any sense, & is no

longer outgoing or competent.

Rate of deterioration does vary greatly, though, and there are no 'givens' with

this disease. Your father

is a very fortunate man to have such loving daughters who are able and willing

to each devote a day

a week to his care. You might want to read our archives.....Everything I know

about Lewy Body, I learned

on this site from other caregivers.

It is YOU who needs to be the expert. Don't depend on the medical

personnel.....You will mostly be doing

the educating. Mai-Liis

[Guest guest]

First, I am so glad you found this group. My dad just turned 65 and has

been diagnosed with LBD for almost 5 yrs. Of course we saw signs a few

years before that.

The only answer I have to " what kind of God rewards His children with a

lifetime of hard work with this disease " ...would be that we were never

promised an easy, illness free life, but we were promised that we would

never be alone. In times of good and bad...in times of fear and praise,

I pray. I can not say life will be easy for you at this point yet for

some otherwise unexplained reason I have found the strength, courage,

and knowledge to face every day. My mom passed away 18 1/2 yrs ago and

my brother (older by 2 yrs) can not cope and doesn't visit dad much. I

don't hold it against him, that is where he is at in life. I do know

that I would not change my decision to give my dad the best of what I

can with my resources and knowledge and still love him with all my

heart.

You will find, unfortunately there is no time line this disease follows

and the fluctuations are also too numerous to mention. Often termed as

the hour by hour disease, changes in the LBD person can seem like

progression...and visa versa.

I wish you and your family peace through this new journey. Pray, as God

already knows what struggles you are going through and the new ones to

follow. I will add you to my ever so growing list of prayers.

Remember, death is inevitable, however, misery is a choice. Enjoy the

good times you will have, and now more than ever, take special care of

yourself!!

Thank you for sharing your story!

Sandie

Des Moines, IA

[Guest guest]

Sending a hug and a prayer your way...wishing I could be more helpful.

Remember, there is power is prayer. I figure, if there is one good

thing that comes out of living this disease is that I will have the

knowledge to help someone else in the future. Someone like myself who

had no knowledge of what to expect...only I wil have had hands on

experience. God Bless you!!

Sandie

Des Moines, IA

[Guest guest]

I am so glad your family has decided to tell your dad of his diagnosis.

All of your reasons made perfect sense. Please don't feel guilty of

your feelings. I think most of us as caregivers have thought it would

be easier and more humane if our loved ones would be taken from this

dreadful disease. I too have had those thoughts, and admit that 10

years ago I would have NEVER had thought I want my dad to pass away. Of

course all of this is for his dignity and quality of life. In my

earthly feelings I would still need him here. Many of us in here have

discussed how we are going through a grieving process. We have lost the

person we have know for so long...and in my opinion, what is strange for

me is I am grieving over a man that I can still look into his eyes.

When I grieved over my mom, I was never able to see her again.

sigh....not sure if all of this makes sense, but it will to you soon.

Give yourself some time to realize your dad will be struggling with LBD,

and how you fit into that. It will get a little easier for your heart

after you have established a routine. God has a bigger plan here so do

trust in Him.

Sandie

Des Moines, IA

[Guest guest]

Thank you Sandie. Your words are very comforting and I do appreciate it.

I keep projecting in my mind and I do not like what I see. Dad is

already not the same sharp dressed NYC banker in his Bros. suits

that he once was. We used to call him Felix Unger because he was so

meticulous about his appearances. My younger sister cried to me on the

phone the other day because Dad was dressed in kackies with a stained

pajama shirt and his hair was a mess and his mouth haning wide open

while he shuffled up the street lost and forgetting where he was. It's

amazing how this disease can take a person and ravage their personality

and mess with their brain.. I wonder if he can see the pity in

everyone's eyes and if that is killing his pride?

I just saw Dad in February. He and Mom were out here in Calif for 2

months during the end of my pregnancy and for the birth of my twin boys.

According to my sibs, Dad has deteriorated considerably in less than 6

months. Mom and Dad were supposed to be coming out here for a few weeks

over Thanksgiving with my younger sis Jen and her husband Jim. However,

the other day, when it was mentioned in front of Dad, he didn't remember

and got very angry blurting out irrational things like " we can't go to

California for 3 days! " No one said anything about 3 days. The funny

thing is that the old Dad jumped at the chance of every west coast trip.

He loves the weather out here. This is the first time I ever heard him

express animosity about this topic. I hope that he can still travel. It

would be sad if their trips out here are over. My husband, 3 kids and I

are going back for Christmas for 3 weeks. So if they don't make it out

here, we'll make it there. Also, I have a very supportive husband who

has told me that anytime I need to take a trip back to just go.

It's hard to travel much because we've had nothing but medical trouble

since the twins were born. Danny had an accident, a fall actually, (when

he was 1 month old), which resulted in a skull fracture. He was in ICU

for 3 days. (I never prayed so hard in my whole life.) He's going to be

alright but he is under the care of a neurologist. Both boys have

ulcerative colitis from a very rare milk protein allergy and they have

to be on prescription formula which costs $40 per can. This is breaking

the bank!! has been in and out of the hospital for breathing

problems which appear to be asthma, yet doctor won't diagnose it

officially that way until he is at least 3 years old. My husband is

nebulizing him as I type this. He requires around the clock special

care. And I was recently diagnosed with a lovely disease called

Barrett's Esophagus which is an erosion of my esophagus from acid. I

have to watch diet very carefully as 1 in 10 people who have this end up

with throat cancer. At 38 years old the prospect of throat cancer is not

a thought I can bear. You don't survive that one. And although you can

be treated for a few years, you lose your esophagus and can no longer

eat or drink. You may as well shoot me if I can't eat or drink =0)

And now Dad's got this LBD. Yikes!! So there's no stress deficit around

here. I can honestly say that if it wasn't for my faith in God and the

big picture, I don't know how I would be able to deal with any of

this. Just when you think it can't get any worse, it goes and gets

worse!! Thank God he gave us a sense of humor so we can have some levity

in our lives when the chips are down.

Well, sorry for rambling. Thanks for the words of wisdom (WOW - new

acronym) Hope I get more WOWs in the future. I better go take care of my

babies. It's another day! Hope you have a great one!

sanclown@... wrote:

>

> I am so glad your family has decided to tell your dad of his diagnosis.

> All of your reasons made perfect sense. Please don't feel guilty of

> your feelings. I think most of us as caregivers have thought it would

> be easier and more humane if our loved ones would be taken from this

> dreadful disease. I too have had those thoughts, and admit that 10

> years ago I would have NEVER had thought I want my dad to pass away. Of

> course all of this is for his dignity and quality of life. In my

> earthly feelings I would still need him here. Many of us in here have

> discussed how we are going through a grieving process. We have lost the

> person we have know for so long...and in my opinion, what is strange for

> me is I am grieving over a man that I can still look into his eyes.

> When I grieved over my mom, I was never able to see her again.

> sigh....not sure if all of this makes sense, but it will to you soon.

> Give yourself some time to realize your dad will be struggling with LBD,

> and how you fit into that. It will get a little easier for your heart

> after you have established a routine. God has a bigger plan here so do

> trust in Him.

> Sandie

> Des Moines, IA

>

>

>

[Guest guest]

, so sorry to see how much you have to bear. It has to take a LOT of

energy to keep going. I hope your dad will be able to travel, but the

further along the harder it is for them - mentally and physically. Crossing

my fingers that things come together for the holidays. Cheryl

[Guest guest]

,

When my mom was first diagnosed with Lewybody back in January, the doctor

told her she would need a wheel chair, she wept. She asked him when she

would get better,(I had asked about prognosis eariler and she didn't hear me

but the doctor more or less told me the prognosis was not good)He didn't

understand what she said so I repeated to him, she wants to know when she

will get better? I didn't have the heart to answer her, so we left it up to

the doctor. He told her there really wasn't a cure but that they would treat

the symptoms. Since that time she has never used the wheel chair and still

looks forward to when she will be her old self again and be able to drive.

She knows she has Lewybody ( a name that she thinks is really stupid). She

still prefers to tell people that she has spine problems. She recently got a

walker which she has not used yet except for a few moments when she first

got it. At times she can walk ok but there is about at least 5 or more hours

a day that she cannot walk without assistance or holding onto a bar we put

in her hall way. She eats in small bites, nothing hard and drools a lot. Her

head is in a downward position which I think is the reason for drooling. She

can only drink a small amount of liquids at a time with a straw. She can

only take pills with hot liquids most of the time, otherwise it is hard for

her to swallow. Her pills usually melt before they go down. Her legs and

feet are constantly swollen. She has high blood pressure which is probably

partly responsible for this.She visual perception is terrible. This disease

is so horrible, there are times when they will do somewhat better for awhile

but usually go back to bad times. I too believe in God and am Catholic, but

it does get very hard. When I read your post about your Dad I had tears

coming down my cheeks. I know how you feel. The only thing I can offer for

now is to let you know that you are not alone. Hopefully we can all offer

each other support. It's good that you have such a large family, I wish I

could borrow a few members. My Dad takes care of my mom, he is 76 she is 75.

He has slowed down so much in caring for her. My brothers and I help as we

can but really don't have as much time as needed and can not afford help. I

worry about my Dad, who may need minor surgery in a few weeks, I have no

idea how we will take care of Mom while he is in the hospital for two days

and don't know how long his recovery will be. I have shoulder problems and

can not stay in one position for long or lift. It really sucks. Sorry to

sound so negative, I meant to reassure you. But then again I feel the need

to tell it like it is. Each patient is diffrent in some ways and a lot the

same in others. I'm sure you can find out more info by going over the pasts

posts but basically I find it doesn't change much, everyone more or less has

their turn at the same problems. Hopefully we can find a common link

eventually. At least we do get a lot of helpful ideas from each other

through this group. Good luck and take care, ....Shirley

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

I don't know if any of this is right. I too am so completely confused.

And I'm sure soon enough it doesn't matter if he knows or not because

he'll forget everything we tell him anyway. I'd hate to have to keep

giving him this news over and over again!! Once is enough ;-)

,

I agree, once is enough. My mom forgot minutes after she was told and I for

one will not tell her again. She is very good remembering stuff but is

forgetting some things also. She talks very good most of the time and if you

were on the phone with her wouldn't know anything was wrong at all most of

the time.I feel that when she talks of getting better and driving again that

I should agree with her. I believe that frame of mind is very important for

anyone with such a disease. When the right time comes though eventually and

I feel she really knows then I will encourage her to let us know of her

wishes. I just don't feel now is that time......Shirley

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

,

I have had problems with indigestion for a long time about 5 years and

finally a doctor started me on one PROTONIX 40mg a day. From day one I

haven't had any indigestion problems for almost a year now since I started

taking it. Good luck, Shirley

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Thanks Shirley. I'm on nexium 40 mg. (which is esomeprazole magnesium).

It may be the same as what you're on. It basically shuts off your acid

pump. But the damage is already done to my esophagus as the cells have

changed. Now I have to have an endoscopy done once a year and have the

cells biopsied to check for cancer. That, and I'm on a pretty strict

diet with no food after 7 pm.

Shirley L wrote:

> ,

> I have had problems with indigestion for a long time about 5 years and

> finally a doctor started me on one PROTONIX 40mg a day. From day one I

> haven't had any indigestion problems for almost a year now since I

> started

> taking it. Good luck, Shirley

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

[Guest guest]

In a message dated 8/8/02 12:11:12 AM Central Daylight Time,

shirley0914@... writes:

> I worry about my Dad, who may need minor surgery in a few weeks, I have no

> idea how we will take care of Mom while he is in the hospital for two days

> and don't know how long his recovery will be.

Shirley, can you talk to his doctor about getting some home health care for a

few weeks, at least, to help your dad? If doc knows the situation he should

be able to write the necessary rx, and Medicare would pay for it. Might even

help with mom. Cheryl

[Guest guest]

,

I missed this email and was sorry I did. I hope you, your father, family

and babies are doing ok. When I had my daughter (almost 11 years ago) she

was so sick. I had her at Children's hospital so often. She had respitory

problems and had to have nebulizer treatments as well. It was hard times.

Then I imagine throwing more children and a sick parent in the mix and I

can't help but feel overwhelmed even when it isn't happening to me. I will

be saying an extra prayer for you and your family and hope things work out.

My MIL has LBD and right now things are not great. We are taking day by

day, but it isn't easy. I will be thinking about you.

Take care,

Re: Just devistated

Thank you Sandie. Your words are very comforting and I do appreciate it.

I keep projecting in my mind and I do not like what I see. Dad is

already not the same sharp dressed NYC banker in his Bros. suits

that he once was. We used to call him Felix Unger because he was so

meticulous about his appearances. My younger sister cried to me on the

phone the other day because Dad was dressed in kackies with a stained

pajama shirt and his hair was a mess and his mouth haning wide open

while he shuffled up the street lost and forgetting where he was. It's

amazing how this disease can take a person and ravage their personality

and mess with their brain.. I wonder if he can see the pity in

everyone's eyes and if that is killing his pride?

I just saw Dad in February. He and Mom were out here in Calif for 2

months during the end of my pregnancy and for the birth of my twin boys.

According to my sibs, Dad has deteriorated considerably in less than 6

months. Mom and Dad were supposed to be coming out here for a few weeks

over Thanksgiving with my younger sis Jen and her husband Jim. However,

the other day, when it was mentioned in front of Dad, he didn't remember

and got very angry blurting out irrational things like " we can't go to

California for 3 days! " No one said anything about 3 days. The funny

thing is that the old Dad jumped at the chance of every west coast trip.

He loves the weather out here. This is the first time I ever heard him

express animosity about this topic. I hope that he can still travel. It

would be sad if their trips out here are over. My husband, 3 kids and I

are going back for Christmas for 3 weeks. So if they don't make it out

here, we'll make it there. Also, I have a very supportive husband who

has told me that anytime I need to take a trip back to just go.

It's hard to travel much because we've had nothing but medical trouble

since the twins were born. Danny had an accident, a fall actually, (when

he was 1 month old), which resulted in a skull fracture. He was in ICU

for 3 days. (I never prayed so hard in my whole life.) He's going to be

alright but he is under the care of a neurologist. Both boys have

ulcerative colitis from a very rare milk protein allergy and they have

to be on prescription formula which costs $40 per can. This is breaking

the bank!! has been in and out of the hospital for breathing

problems which appear to be asthma, yet doctor won't diagnose it

officially that way until he is at least 3 years old. My husband is

nebulizing him as I type this. He requires around the clock special

care. And I was recently diagnosed with a lovely disease called

Barrett's Esophagus which is an erosion of my esophagus from acid. I

have to watch diet very carefully as 1 in 10 people who have this end up

with throat cancer. At 38 years old the prospect of throat cancer is not

a thought I can bear. You don't survive that one. And although you can

be treated for a few years, you lose your esophagus and can no longer

eat or drink. You may as well shoot me if I can't eat or drink =0)

And now Dad's got this LBD. Yikes!! So there's no stress deficit around

here. I can honestly say that if it wasn't for my faith in God and the

big picture, I don't know how I would be able to deal with any of

this. Just when you think it can't get any worse, it goes and gets

worse!! Thank God he gave us a sense of humor so we can have some levity

in our lives when the chips are down.

Well, sorry for rambling. Thanks for the words of wisdom (WOW - new

acronym) Hope I get more WOWs in the future. I better go take care of my

babies. It's another day! Hope you have a great one!

sanclown@... wrote:

>

> I am so glad your family has decided to tell your dad of his diagnosis.

> All of your reasons made perfect sense. Please don't feel guilty of

> your feelings. I think most of us as caregivers have thought it would

> be easier and more humane if our loved ones would be taken from this

> dreadful disease. I too have had those thoughts, and admit that 10

> years ago I would have NEVER had thought I want my dad to pass away. Of

> course all of this is for his dignity and quality of life. In my

> earthly feelings I would still need him here. Many of us in here have

> discussed how we are going through a grieving process. We have lost the

> person we have know for so long...and in my opinion, what is strange for

> me is I am grieving over a man that I can still look into his eyes.

> When I grieved over my mom, I was never able to see her again.

> sigh....not sure if all of this makes sense, but it will to you soon.

> Give yourself some time to realize your dad will be struggling with LBD,

> and how you fit into that. It will get a little easier for your heart

> after you have established a routine. God has a bigger plan here so do

> trust in Him.

> Sandie

> Des Moines, IA

>

>

>

[Guest guest]

Thanks for the prayers and the kind words . From reading the

postings, it sounds like you have your challenges too. Of course, I will

keep you and all LBD patients and families in my prayers.

cindy.vechinski@... wrote:

> ,

>

> I missed this email and was sorry I did. I hope you, your father, family

> and babies are doing ok. When I had my daughter (almost 11 years ago) she

> was so sick. I had her at Children's hospital so often. She had

> respitory

> problems and had to have nebulizer treatments as well. It was hard times.

> Then I imagine throwing more children and a sick parent in the mix and I

> can't help but feel overwhelmed even when it isn't happening to me. I

> will

> be saying an extra prayer for you and your family and hope things work

> out.

>

>

> My MIL has LBD and right now things are not great. We are taking day by

> day, but it isn't easy. I will be thinking about you.

>

> Take care,

>

>

>

> Re: Just devistated

>

>

> Thank you Sandie. Your words are very comforting and I do appreciate it.

> I keep projecting in my mind and I do not like what I see. Dad is

> already not the same sharp dressed NYC banker in his Bros. suits

> that he once was. We used to call him Felix Unger because he was so

> meticulous about his appearances. My younger sister cried to me on the

> phone the other day because Dad was dressed in kackies with a stained

> pajama shirt and his hair was a mess and his mouth haning wide open

> while he shuffled up the street lost and forgetting where he was. It's

> amazing how this disease can take a person and ravage their personality

> and mess with their brain.. I wonder if he can see the pity in

> everyone's eyes and if that is killing his pride?

>

> I just saw Dad in February. He and Mom were out here in Calif for 2

> months during the end of my pregnancy and for the birth of my twin boys.

> According to my sibs, Dad has deteriorated considerably in less than 6

> months. Mom and Dad were supposed to be coming out here for a few weeks

> over Thanksgiving with my younger sis Jen and her husband Jim. However,

> the other day, when it was mentioned in front of Dad, he didn't remember

> and got very angry blurting out irrational things like " we can't go to

> California for 3 days! " No one said anything about 3 days. The funny

> thing is that the old Dad jumped at the chance of every west coast trip.

> He loves the weather out here. This is the first time I ever heard him

> express animosity about this topic. I hope that he can still travel. It

> would be sad if their trips out here are over. My husband, 3 kids and I

> are going back for Christmas for 3 weeks. So if they don't make it out

> here, we'll make it there. Also, I have a very supportive husband who

> has told me that anytime I need to take a trip back to just go.

>

> It's hard to travel much because we've had nothing but medical trouble

> since the twins were born. Danny had an accident, a fall actually, (when

> he was 1 month old), which resulted in a skull fracture. He was in ICU

> for 3 days. (I never prayed so hard in my whole life.) He's going to be

> alright but he is under the care of a neurologist. Both boys have

> ulcerative colitis from a very rare milk protein allergy and they have

> to be on prescription formula which costs $40 per can. This is breaking

> the bank!! has been in and out of the hospital for breathing

> problems which appear to be asthma, yet doctor won't diagnose it

> officially that way until he is at least 3 years old. My husband is

> nebulizing him as I type this. He requires around the clock special

> care. And I was recently diagnosed with a lovely disease called

> Barrett's Esophagus which is an erosion of my esophagus from acid. I

> have to watch diet very carefully as 1 in 10 people who have this end up

> with throat cancer. At 38 years old the prospect of throat cancer is not

> a thought I can bear. You don't survive that one. And although you can

> be treated for a few years, you lose your esophagus and can no longer

> eat or drink. You may as well shoot me if I can't eat or drink =0)

> And now Dad's got this LBD. Yikes!! So there's no stress deficit around

> here. I can honestly say that if it wasn't for my faith in God and the

> big picture, I don't know how I would be able to deal with any of

> this. Just when you think it can't get any worse, it goes and gets

> worse!! Thank God he gave us a sense of humor so we can have some levity

> in our lives when the chips are down.

>

> Well, sorry for rambling. Thanks for the words of wisdom (WOW - new

> acronym) Hope I get more WOWs in the future. I better go take care of my

> babies. It's another day! Hope you have a great one!

>

>

>

>

> sanclown@... wrote:

>

> >

> > I am so glad your family has decided to tell your dad of his diagnosis.

> > All of your reasons made perfect sense. Please don't feel guilty of

> > your feelings. I think most of us as caregivers have thought it would

> > be easier and more humane if our loved ones would be taken from this

> > dreadful disease. I too have had those thoughts, and admit that 10

> > years ago I would have NEVER had thought I want my dad to pass away. Of

> > course all of this is for his dignity and quality of life. In my

> > earthly feelings I would still need him here. Many of us in here have

> > discussed how we are going through a grieving process. We have lost the

> > person we have know for so long...and in my opinion, what is strange for

> > me is I am grieving over a man that I can still look into his eyes.

> > When I grieved over my mom, I was never able to see her again.

> > sigh....not sure if all of this makes sense, but it will to you soon.

> > Give yourself some time to realize your dad will be struggling with LBD,

> > and how you fit into that. It will get a little easier for your heart

> > after you have established a routine. God has a bigger plan here so do

> > trust in Him.

> > Sandie

> > Des Moines, IA

> >

> >

> >

[Guest guest]

Thanks for the prayers and the kind words . From reading the

postings, it sounds like you have your challenges too. Of course, I will

keep you and all LBD patients and families in my prayers.

cindy.vechinski@... wrote:

> ,

>

> I missed this email and was sorry I did. I hope you, your father, family

> and babies are doing ok. When I had my daughter (almost 11 years ago) she

> was so sick. I had her at Children's hospital so often. She had

> respitory

> problems and had to have nebulizer treatments as well. It was hard times.

> Then I imagine throwing more children and a sick parent in the mix and I

> can't help but feel overwhelmed even when it isn't happening to me. I

> will

> be saying an extra prayer for you and your family and hope things work

> out.

>

>

> My MIL has LBD and right now things are not great. We are taking day by

> day, but it isn't easy. I will be thinking about you.

>

> Take care,

>

>

>

> Re: Just devistated

>

>

> Thank you Sandie. Your words are very comforting and I do appreciate it.

> I keep projecting in my mind and I do not like what I see. Dad is

> already not the same sharp dressed NYC banker in his Bros. suits

> that he once was. We used to call him Felix Unger because he was so

> meticulous about his appearances. My younger sister cried to me on the

> phone the other day because Dad was dressed in kackies with a stained

> pajama shirt and his hair was a mess and his mouth haning wide open

> while he shuffled up the street lost and forgetting where he was. It's

> amazing how this disease can take a person and ravage their personality

> and mess with their brain.. I wonder if he can see the pity in

> everyone's eyes and if that is killing his pride?

>

> I just saw Dad in February. He and Mom were out here in Calif for 2

> months during the end of my pregnancy and for the birth of my twin boys.

> According to my sibs, Dad has deteriorated considerably in less than 6

> months. Mom and Dad were supposed to be coming out here for a few weeks

> over Thanksgiving with my younger sis Jen and her husband Jim. However,

> the other day, when it was mentioned in front of Dad, he didn't remember

> and got very angry blurting out irrational things like " we can't go to

> California for 3 days! " No one said anything about 3 days. The funny

> thing is that the old Dad jumped at the chance of every west coast trip.

> He loves the weather out here. This is the first time I ever heard him

> express animosity about this topic. I hope that he can still travel. It

> would be sad if their trips out here are over. My husband, 3 kids and I

> are going back for Christmas for 3 weeks. So if they don't make it out

> here, we'll make it there. Also, I have a very supportive husband who

> has told me that anytime I need to take a trip back to just go.

>

> It's hard to travel much because we've had nothing but medical trouble

> since the twins were born. Danny had an accident, a fall actually, (when

> he was 1 month old), which resulted in a skull fracture. He was in ICU

> for 3 days. (I never prayed so hard in my whole life.) He's going to be

> alright but he is under the care of a neurologist. Both boys have

> ulcerative colitis from a very rare milk protein allergy and they have

> to be on prescription formula which costs $40 per can. This is breaking

> the bank!! has been in and out of the hospital for breathing

> problems which appear to be asthma, yet doctor won't diagnose it

> officially that way until he is at least 3 years old. My husband is

> nebulizing him as I type this. He requires around the clock special

> care. And I was recently diagnosed with a lovely disease called

> Barrett's Esophagus which is an erosion of my esophagus from acid. I

> have to watch diet very carefully as 1 in 10 people who have this end up

> with throat cancer. At 38 years old the prospect of throat cancer is not

> a thought I can bear. You don't survive that one. And although you can

> be treated for a few years, you lose your esophagus and can no longer

> eat or drink. You may as well shoot me if I can't eat or drink =0)

> And now Dad's got this LBD. Yikes!! So there's no stress deficit around

> here. I can honestly say that if it wasn't for my faith in God and the

> big picture, I don't know how I would be able to deal with any of

> this. Just when you think it can't get any worse, it goes and gets

> worse!! Thank God he gave us a sense of humor so we can have some levity

> in our lives when the chips are down.

>

> Well, sorry for rambling. Thanks for the words of wisdom (WOW - new

> acronym) Hope I get more WOWs in the future. I better go take care of my

> babies. It's another day! Hope you have a great one!

>

>

>

>

> sanclown@... wrote:

>

> >

> > I am so glad your family has decided to tell your dad of his diagnosis.

> > All of your reasons made perfect sense. Please don't feel guilty of

> > your feelings. I think most of us as caregivers have thought it would

> > be easier and more humane if our loved ones would be taken from this

> > dreadful disease. I too have had those thoughts, and admit that 10

> > years ago I would have NEVER had thought I want my dad to pass away. Of

> > course all of this is for his dignity and quality of life. In my

> > earthly feelings I would still need him here. Many of us in here have

> > discussed how we are going through a grieving process. We have lost the

> > person we have know for so long...and in my opinion, what is strange for

> > me is I am grieving over a man that I can still look into his eyes.

> > When I grieved over my mom, I was never able to see her again.

> > sigh....not sure if all of this makes sense, but it will to you soon.

> > Give yourself some time to realize your dad will be struggling with LBD,

> > and how you fit into that. It will get a little easier for your heart

> > after you have established a routine. God has a bigger plan here so do

> > trust in Him.

> > Sandie

> > Des Moines, IA

> >

> >

> >

[Guest guest]

Thanks for the prayers and the kind words . From reading the

postings, it sounds like you have your challenges too. Of course, I will

keep you and all LBD patients and families in my prayers.

cindy.vechinski@... wrote:

> ,

>

> I missed this email and was sorry I did. I hope you, your father, family

> and babies are doing ok. When I had my daughter (almost 11 years ago) she

> was so sick. I had her at Children's hospital so often. She had

> respitory

> problems and had to have nebulizer treatments as well. It was hard times.

> Then I imagine throwing more children and a sick parent in the mix and I

> can't help but feel overwhelmed even when it isn't happening to me. I

> will

> be saying an extra prayer for you and your family and hope things work

> out.

>

>

> My MIL has LBD and right now things are not great. We are taking day by

> day, but it isn't easy. I will be thinking about you.

>

> Take care,

>

>

>

> Re: Just devistated

>

>

> Thank you Sandie. Your words are very comforting and I do appreciate it.

> I keep projecting in my mind and I do not like what I see. Dad is

> already not the same sharp dressed NYC banker in his Bros. suits

> that he once was. We used to call him Felix Unger because he was so

> meticulous about his appearances. My younger sister cried to me on the

> phone the other day because Dad was dressed in kackies with a stained

> pajama shirt and his hair was a mess and his mouth haning wide open

> while he shuffled up the street lost and forgetting where he was. It's

> amazing how this disease can take a person and ravage their personality

> and mess with their brain.. I wonder if he can see the pity in

> everyone's eyes and if that is killing his pride?

>

> I just saw Dad in February. He and Mom were out here in Calif for 2

> months during the end of my pregnancy and for the birth of my twin boys.

> According to my sibs, Dad has deteriorated considerably in less than 6

> months. Mom and Dad were supposed to be coming out here for a few weeks

> over Thanksgiving with my younger sis Jen and her husband Jim. However,

> the other day, when it was mentioned in front of Dad, he didn't remember

> and got very angry blurting out irrational things like " we can't go to

> California for 3 days! " No one said anything about 3 days. The funny

> thing is that the old Dad jumped at the chance of every west coast trip.

> He loves the weather out here. This is the first time I ever heard him

> express animosity about this topic. I hope that he can still travel. It

> would be sad if their trips out here are over. My husband, 3 kids and I

> are going back for Christmas for 3 weeks. So if they don't make it out

> here, we'll make it there. Also, I have a very supportive husband who

> has told me that anytime I need to take a trip back to just go.

>

> It's hard to travel much because we've had nothing but medical trouble

> since the twins were born. Danny had an accident, a fall actually, (when

> he was 1 month old), which resulted in a skull fracture. He was in ICU

> for 3 days. (I never prayed so hard in my whole life.) He's going to be

> alright but he is under the care of a neurologist. Both boys have

> ulcerative colitis from a very rare milk protein allergy and they have

> to be on prescription formula which costs $40 per can. This is breaking

> the bank!! has been in and out of the hospital for breathing

> problems which appear to be asthma, yet doctor won't diagnose it

> officially that way until he is at least 3 years old. My husband is

> nebulizing him as I type this. He requires around the clock special

> care. And I was recently diagnosed with a lovely disease called

> Barrett's Esophagus which is an erosion of my esophagus from acid. I

> have to watch diet very carefully as 1 in 10 people who have this end up

> with throat cancer. At 38 years old the prospect of throat cancer is not

> a thought I can bear. You don't survive that one. And although you can

> be treated for a few years, you lose your esophagus and can no longer

> eat or drink. You may as well shoot me if I can't eat or drink =0)

> And now Dad's got this LBD. Yikes!! So there's no stress deficit around

> here. I can honestly say that if it wasn't for my faith in God and the

> big picture, I don't know how I would be able to deal with any of

> this. Just when you think it can't get any worse, it goes and gets

> worse!! Thank God he gave us a sense of humor so we can have some levity

> in our lives when the chips are down.

>

> Well, sorry for rambling. Thanks for the words of wisdom (WOW - new

> acronym) Hope I get more WOWs in the future. I better go take care of my

> babies. It's another day! Hope you have a great one!

>

>

>

>

> sanclown@... wrote:

>

> >

> > I am so glad your family has decided to tell your dad of his diagnosis.

> > All of your reasons made perfect sense. Please don't feel guilty of

> > your feelings. I think most of us as caregivers have thought it would

> > be easier and more humane if our loved ones would be taken from this

> > dreadful disease. I too have had those thoughts, and admit that 10

> > years ago I would have NEVER had thought I want my dad to pass away. Of

> > course all of this is for his dignity and quality of life. In my

> > earthly feelings I would still need him here. Many of us in here have

> > discussed how we are going through a grieving process. We have lost the

> > person we have know for so long...and in my opinion, what is strange for

> > me is I am grieving over a man that I can still look into his eyes.

> > When I grieved over my mom, I was never able to see her again.

> > sigh....not sure if all of this makes sense, but it will to you soon.

> > Give yourself some time to realize your dad will be struggling with LBD,

> > and how you fit into that. It will get a little easier for your heart

> > after you have established a routine. God has a bigger plan here so do

> > trust in Him.

> > Sandie

> > Des Moines, IA

> >

> >

> >