Re: What I hear you saying

December 3, 2008

Thanks for sending this-I really needed to hear that today. It is a huge

responsibility and yes we don't always take care of ourselves.

I finally realized yesterday that Charlie will make the decisions he is going to

make and most of them, I cannot change or help him change his mind. I just have

to be there to support him. Easier said than done some days.

Nona

From: abijann <no_reply >

Subject: What I hear you saying

To: livercirrhosissupport

Date: Wednesday, December 3, 2008, 12:49 PM

Caregivers have a real responsibility that they might not of asked

for. There are many caregivers who take care of their elderly

parents, those with alzheimers, and also those with cirrhosis of the

liver and other diseases.

They should be rewarded for the work they do, but the focus isn't

on them...it is on the patient and their needs.

I have read the past posts and I hear so much love from the

caregivers here, it is unbelievable. Things like, " I cannot

make him care about himself and take care of himself...he

won't do what the doctor asks him or tells him to do. "

another one is, " I'm very depressed and don't know how long

I'm going to be able to live like this " and " he doesn't

care about me and when I'm ill " All these comments are LOVE.

If you didn't care so much, you would not be fighting with

him to start to realize that he should take care of himself so

he can be with you and you won't lose him. Someone who is sick,

usually has everyone's undivided attention... they are the center

of attention. The frustrations you feel, are not because you

don't want to take care of them...it is because they need to

hear that you care about them. You shouldn't have to tell them,

it should be obvious. By you having to tell them and point it

out to them...it lets them know you care...but it makes you

feel like they don't care about you or how you feel. You also

need to hear that back from them...but they don't give it back

to you. Wouldn't it be nice, that after you told them that,

that they would turn around and say, " Honey, I know you care

so much about me and it makes me feel good...I will try harder

to do what needs to be done so that I won't die and leave you

all alone and I love you and don't want you to feel depressed

so much by what I do and how I act at times. "

The problem is, that doesn't happen. People who have cirrhosis

of the liver do not think very clearly. They are so mad and

upset about what is happening to them...the loss of their

dreams, not knowing what the future holds, not knowing if

they will be alive tomorrow, not knowing if the treatments

are going to help them, being tired of being poked at and

told what to do...*that they don't realize how it is

affecting those around them*...

It is quite a normal feeling to wish things were different or

become so tired of it all, that you wish it was over. It is

like being in a hole and trying to work your way out so

you can get to the light. You keep trying to climb out only

to end up with dirt being thrown on your face like you

are being buried.

Caregivers are told to take care of themselves first.

The reason for this, is that if things get worse for the patient,

they have to be strong enough to take care of them and be there

for them. They don't go into telling the caregiver what they

should feel, how to act, how to respond, or what they can

do to take care of themselves.. .other than the basics like

eat well, make sure they get enough sleep, exercise and the

things to prevent them from getting sick physically.. ..

but what about emotionally. Emotionally, they can feel

as if a weight has been handed them that they cannot carry or

that it feels like it is getting so heavy that it is starting

to crush them into pieces...yet, they are not allowed to put

it down.

What would be a big help to the caregivers, is that they have

someone to talk to, someone who truly cares about them,

someone who can share those feeling, people who will help them.

They need to know they are loved and can feel secure, warm,

and cuddled. They also need to know that the future holds

more than just a constant torturing feeling of " I just exist. "

Take time to realize that you are very special. That you are

giving of your time and your energy to take care of those you love.

LOVE YOURSELF and realize that you do matter. What would the

patient do if you were not there? What would they do if you didn't

care...would they give up hope?

Remember that the patient has a mind of their own. They decide

whether or not they want help, they have the right to refuse care,

they have a right to think and do what they want. You can only

guide them...and sometimes a soft voice and explanation is better

than hollering. When someone hollers, most people will automatically

tune them out. If someone explains why they feel the way they

do and why they don't understand the way someone is acting...they

will more than likely get a response.

Remember, if you are depressed... they may be in a depression also.

The only one that can get you out of a depression is yourself..

whether you are the patient or the caregiver. It takes looking

at your thoughts and deciding whether that is the way you

want to feel. It is stepping back and realizing what is in your

control to do and what is out of your control to handle.

When a patient is lying in bed with a disease, the hearts of

his loved ones around him want so much to do something, anything

to make him well again...to show their love...to comfort them...

to remove their pain...to encourage them.../However, to cure them

is not something they can do themselves.. .they have to go to

their Father and ask that his wishes be done for he knows what

is best for the patient...more than they know themselves.

I hope this has helped some of you.

December 3, 2008

Thank you abijann, it did indeed help. I needed to hear those things and I so

appreciate you for understanding that. God bless you!

Hugs.........

Diane

________________________________

From: abijann <no_reply >

To: livercirrhosissupport

Sent: Wednesday, December 3, 2008 12:49:20 PM

Subject: What I hear you saying

Caregivers have a real responsibility that they might not of asked

for. There are many caregivers who take care of their elderly

parents, those with alzheimers, and also those with cirrhosis of the

liver and other diseases.

They should be rewarded for the work they do, but the focus isn't

on them...it is on the patient and their needs.

I have read the past posts and I hear so much love from the

caregivers here, it is unbelievable. Things like, " I cannot

make him care about himself and take care of himself...he

won't do what the doctor asks him or tells him to do. "

another one is, " I'm very depressed and don't know how long

I'm going to be able to live like this " and " he doesn't

care about me and when I'm ill " All these comments are LOVE.

If you didn't care so much, you would not be fighting with

him to start to realize that he should take care of himself so

he can be with you and you won't lose him. Someone who is sick,

usually has everyone's undivided attention... they are the center

of attention. The frustrations you feel, are not because you

don't want to take care of them...it is because they need to

hear that you care about them. You shouldn't have to tell them,

it should be obvious. By you having to tell them and point it

out to them...it lets them know you care...but it makes you

feel like they don't care about you or how you feel. You also

need to hear that back from them...but they don't give it back

to you. Wouldn't it be nice, that after you told them that,

that they would turn around and say, " Honey, I know you care

so much about me and it makes me feel good...I will try harder

to do what needs to be done so that I won't die and leave you

all alone and I love you and don't want you to feel depressed

so much by what I do and how I act at times. "

The problem is, that doesn't happen. People who have cirrhosis

of the liver do not think very clearly. They are so mad and

upset about what is happening to them...the loss of their

dreams, not knowing what the future holds, not knowing if

they will be alive tomorrow, not knowing if the treatments

are going to help them, being tired of being poked at and

told what to do...*that they don't realize how it is

affecting those around them*...

It is quite a normal feeling to wish things were different or

become so tired of it all, that you wish it was over. It is

like being in a hole and trying to work your way out so

you can get to the light. You keep trying to climb out only

to end up with dirt being thrown on your face like you

are being buried.

Caregivers are told to take care of themselves first.

The reason for this, is that if things get worse for the patient,

they have to be strong enough to take care of them and be there

for them. They don't go into telling the caregiver what they

should feel, how to act, how to respond, or what they can

do to take care of themselves.. .other than the basics like

eat well, make sure they get enough sleep, exercise and the

things to prevent them from getting sick physically.. ..

but what about emotionally. Emotionally, they can feel

as if a weight has been handed them that they cannot carry or

that it feels like it is getting so heavy that it is starting

to crush them into pieces...yet, they are not allowed to put

it down.

What would be a big help to the caregivers, is that they have

someone to talk to, someone who truly cares about them,

someone who can share those feeling, people who will help them.

They need to know they are loved and can feel secure, warm,

and cuddled. They also need to know that the future holds

more than just a constant torturing feeling of " I just exist. "

Take time to realize that you are very special. That you are

giving of your time and your energy to take care of those you love.

LOVE YOURSELF and realize that you do matter. What would the

patient do if you were not there? What would they do if you didn't

care...would they give up hope?

Remember that the patient has a mind of their own. They decide

whether or not they want help, they have the right to refuse care,

they have a right to think and do what they want. You can only

guide them...and sometimes a soft voice and explanation is better

than hollering. When someone hollers, most people will automatically

tune them out. If someone explains why they feel the way they

do and why they don't understand the way someone is acting...they

will more than likely get a response.

Remember, if you are depressed... they may be in a depression also.

The only one that can get you out of a depression is yourself..

whether you are the patient or the caregiver. It takes looking

at your thoughts and deciding whether that is the way you

want to feel. It is stepping back and realizing what is in your

control to do and what is out of your control to handle.

When a patient is lying in bed with a disease, the hearts of

his loved ones around him want so much to do something, anything

to make him well again...to show their love...to comfort them...

to remove their pain...to encourage them.../However, to cure them

is not something they can do themselves.. .they have to go to

their Father and ask that his wishes be done for he knows what

is best for the patient...more than they know themselves.

I hope this has helped some of you.

December 3, 2008

Thanks for your post abijann. Believe me, being a caregiver isn't new to me.

My mother suffered for 6 years with Alzheimers Disease before she died. To see

someone's mind slip is something I've seen before. I said those things because

I am very frustrated and ill and just plain tired. Cirrhosis doesn't affect just

the patient, it affects the whole family We've always been a team and to not be

a team anymore hurts. I went for a hypnotherapy session today. I knew it would

help with my stress levels. I could have fallen asleep instead of him bringing

me out of the hypnosis. It was good. He sends you with a tape of the session to

do it twice a day at home. Ed's fever is still 100 today......but he will not

go to the doctor. If still up tomorrow, will call his Gastro here........maybe

we'll be in the hospital together Friday!!!. LOL

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

From: abijann <no_reply >

Subject: What I hear you saying

To: livercirrhosissupport

Date: Wednesday, December 3, 2008, 1:49 PM

Caregivers have a real responsibility that they might not of asked

for. There are many caregivers who take care of their elderly

parents, those with alzheimers, and also those with cirrhosis of the

liver and other diseases.

They should be rewarded for the work they do, but the focus isn't

on them...it is on the patient and their needs.

I have read the past posts and I hear so much love from the

caregivers here, it is unbelievable. Things like, " I cannot

make him care about himself and take care of himself...he

won't do what the doctor asks him or tells him to do. "

another one is, " I'm very depressed and don't know how long

I'm going to be able to live like this " and " he doesn't

care about me and when I'm ill " All these comments are LOVE.

If you didn't care so much, you would not be fighting with

him to start to realize that he should take care of himself so

he can be with you and you won't lose him. Someone who is sick,

usually has everyone's undivided attention... they are the center

of attention. The frustrations you feel, are not because you

don't want to take care of them...it is because they need to

hear that you care about them. You shouldn't have to tell them,

it should be obvious. By you having to tell them and point it

out to them...it lets them know you care...but it makes you

feel like they don't care about you or how you feel. You also

need to hear that back from them...but they don't give it back

to you. Wouldn't it be nice, that after you told them that,

that they would turn around and say, " Honey, I know you care

so much about me and it makes me feel good...I will try harder

to do what needs to be done so that I won't die and leave you

all alone and I love you and don't want you to feel depressed

so much by what I do and how I act at times. "

The problem is, that doesn't happen. People who have cirrhosis

of the liver do not think very clearly. They are so mad and

upset about what is happening to them...the loss of their

dreams, not knowing what the future holds, not knowing if

they will be alive tomorrow, not knowing if the treatments

are going to help them, being tired of being poked at and

told what to do...*that they don't realize how it is

affecting those around them*...

It is quite a normal feeling to wish things were different or

become so tired of it all, that you wish it was over. It is

like being in a hole and trying to work your way out so

you can get to the light. You keep trying to climb out only

to end up with dirt being thrown on your face like you

are being buried.

Caregivers are told to take care of themselves first.

The reason for this, is that if things get worse for the patient,

they have to be strong enough to take care of them and be there

for them. They don't go into telling the caregiver what they

should feel, how to act, how to respond, or what they can

do to take care of themselves.. .other than the basics like

eat well, make sure they get enough sleep, exercise and the

things to prevent them from getting sick physically.. ..

but what about emotionally. Emotionally, they can feel

as if a weight has been handed them that they cannot carry or

that it feels like it is getting so heavy that it is starting

to crush them into pieces...yet, they are not allowed to put

it down.

What would be a big help to the caregivers, is that they have

someone to talk to, someone who truly cares about them,

someone who can share those feeling, people who will help them.

They need to know they are loved and can feel secure, warm,

and cuddled. They also need to know that the future holds

more than just a constant torturing feeling of " I just exist. "

Take time to realize that you are very special. That you are

giving of your time and your energy to take care of those you love.

LOVE YOURSELF and realize that you do matter. What would the

patient do if you were not there? What would they do if you didn't

care...would they give up hope?

Remember that the patient has a mind of their own. They decide

whether or not they want help, they have the right to refuse care,

they have a right to think and do what they want. You can only

guide them...and sometimes a soft voice and explanation is better

than hollering. When someone hollers, most people will automatically

tune them out. If someone explains why they feel the way they

do and why they don't understand the way someone is acting...they

will more than likely get a response.

Remember, if you are depressed... they may be in a depression also.

The only one that can get you out of a depression is yourself..

whether you are the patient or the caregiver. It takes looking

at your thoughts and deciding whether that is the way you

want to feel. It is stepping back and realizing what is in your

control to do and what is out of your control to handle.

When a patient is lying in bed with a disease, the hearts of

his loved ones around him want so much to do something, anything

to make him well again...to show their love...to comfort them...

to remove their pain...to encourage them.../However, to cure them

is not something they can do themselves.. .they have to go to

their Father and ask that his wishes be done for he knows what

is best for the patient...more than they know themselves.

I hope this has helped some of you.

December 4, 2008

Amen to your post Abijann. you put your heart in it and i really hear you.

to share a moment don't know if it really pertains to what you were talking

about...but....I was walking in the store with my husband yesterday and we ran

into the son of a couple we knew. the husband past rather sudden 2 yrs ago. well

to make this short the widow is having a hard time she is making wrong choices

looking for something...i turned to my husband and said this is why you can not

leave me cause the world will eat me up if you were not here to protect me...he

said he is not going to leave me but i do have to wiser and stronger...i felt

relief to be able to exchange this touchy dialog with him

you can not change another persons behavior you can only change your reaction to

it. AND then possibly your change will provoke a change in them:)

love in christ sandra

________________________________

To: livercirrhosissupport

Sent: Wednesday, December 3, 2008 6:32:58 PM

Subject: Re: What I hear you saying