Re: Question for some former caregivers

[Guest guest]

Jackie - I haven't been a caretaker, but have had similar flashbacks

to places in my life which were upsetting. It must be almost like he

had died and now is miraculously back with the living. When he was so

sick before the transplant, he wasn't the person you had known before.

He came so close. Can you work on being so glad he is so much

better now rather than being sad because he was so bad and you could

really not do much about it. Can you make those tears happy tears

instead of sad tears? And then if he asks, just say you are so happy

he got the transplant, that he is doing so well. The flash backs can

be seen both ways. It is the interpretation you put on them which

causes your reaction. Do you think it is possible to change your

interpretation? I know I haven't been a caretaker of someone with

cirrhosis, but I really understand how hard it is on caretakers of any

kind. I just hope nobody has to do that for me. Jan

> Hi All:  Been following the posts and thinking of you all.  Hoping and praying

this new year will bring good things for all.  My husband will be 8 months

post-transplant on the 26th of this month.  He's doing well and has now

" graduated " to seeing the transplant drs every 3 months instead of once a month

and getting bloodwork done once a week instead of twice a week.  That should

make us happy, right?  It does, but I have a question for some of you who have

been caregivers.  Do you ever get these mental images in your head of when your

loved one was so very sick, and you just can't seem to get it out of your mind?

 This happens to me now and then and I get so very sad.  This morning I looked

over at my husband sleeping and remembered last year at this time when I would

spend entire days on end sitting on the bed beside him, and being so thrilled

when he would eat 2 bites of food.  I get a mental picture of this and then I

burst out crying and he can't figure out what's wrong with me.  I don't want him

to feel guilty for having me go thru all that.  I can't talk to my friends about

it because they haven't been thru it and are totally clueless.  Just puttin it

out there.  Maybe someone on this group will understand.  Hope I haven't upset

anyone.  You are all so very dear to me.  Love, Jackie

>

>

>

> ------------------------------------

>

> Group Email:    livercirrhosissupport

> web address:

> http://groups.yahoo.com/group/livercirrhosissupport/

>

[Guest guest]

Jacki,

This is a process of healing...I call a healing cycle for you.  It is okay to

feel this way.  You may need a professional to help you heal from this....You

have been on a very fast schedule this past year.  Reach out and talk to us

because we will need you in our journeys.

Always remember we are hear for you.  Call me if you need to.

Love you

Lyncia

________________________________

To: livercirrhosissupport

Sent: Wed, January 12, 2011 11:18:14 PM

Subject: Re: Question for some former caregivers

 

Jackie - I haven't been a caretaker, but have had similar flashbacks

to places in my life which were upsetting. It must be almost like he

had died and now is miraculously back with the living. When he was so

sick before the transplant, he wasn't the person you had known before.

He came so close. Can you work on being so glad he is so much

better now rather than being sad because he was so bad and you could

really not do much about it. Can you make those tears happy tears

instead of sad tears? And then if he asks, just say you are so happy

he got the transplant, that he is doing so well. The flash backs can

be seen both ways. It is the interpretation you put on them which

causes your reaction. Do you think it is possible to change your

interpretation? I know I haven't been a caretaker of someone with

cirrhosis, but I really understand how hard it is on caretakers of any

kind. I just hope nobody has to do that for me. Jan

> Hi All:  Been following the posts and thinking of you all.  Hoping and

praying

>this new year will bring good things for all.  My husband will be 8 months

>post-transplant on the 26th of this month.  He's doing well and has now

> " graduated " to seeing the transplant drs every 3 months instead of once a month

>and getting bloodwork done once a week instead of twice a week.  That should

>make us happy, right?  It does, but I have a question for some of you who have

>been caregivers.  Do you ever get these mental images in your head of when

your

>loved one was so very sick, and you just can't seem to get it out of your mind?

> This happens to me now and then and I get so very sad.  This morning I

looked

>over at my husband sleeping and remembered last year at this time when I would

>spend entire days on end sitting on the bed beside him, and being so thrilled

>when he would eat 2 bites of food.  I get a mental picture of this and then I

>burst out crying and he can't figure out what's wrong with me.  I don't want

him

>to feel guilty for having me go thru all that.  I can't talk to my friends

about

>it because they haven't been thru it and are totally clueless.  Just puttin it

>out there.  Maybe someone on this group will understand.  Hope I haven't

upset

>anyone.  You are all so very dear to me.  Love, Jackie

>

>

>

> ------------------------------------

>

> Group Email:    livercirrhosissupport

> web address:

> http://groups.yahoo.com/group/livercirrhosissupport/

>

[Guest guest]

Dear Jackie, I often think back at the time when Ardis was here with us. Taking

care of her permanently changed both my wife and myself. I do remember the joy

of winning those little micro battles, like getting them to eat two spoonfuls of

food, getting the doctor to realize that a low sodium diet is going to kill them

because the patient isnt eating 2000 mg of FOOD per day, so how the hell can low

sodium be an issue. I have learned so much since then,and I am grateful that

Ardis left me a trail to follow-to live instead of die. . I do have images in my

head of when my loved one was very ill, but since our outcome was different, all

I have left is the memories, memories I made as a result of knowing that she

was going to die. There are poems and songs written about it, and many people

try ever so hard to " live like this day is your last one " or " make every

day count " . but very few are able to actually do it. is very very blessed

to have you.

I remember how you fought for him top get this liver and save his life. No doubt

you have some emotional scarrs, and you would do well to take good care of

yourself. Maybe you should talk to someone... just a suggestion. You would be

totaslly normal if you had some post traumatic stress syndrome going on.

Remember, it is about mind-body-spirit.

Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Wed, January 12, 2011 8:36:02 PM

Subject: Question for some former caregivers

Hi All: Been following the posts and thinking of you all. Hoping and praying

this new year will bring good things for all. My husband will be 8 months

post-transplant on the 26th of this month. He's doing well and has now

" graduated " to seeing the transplant drs every 3 months instead of once a month

and getting bloodwork done once a week instead of twice a week. That should

make us happy, right? It does, but I have a question for some of you who have

been caregivers. Do you ever get these mental images in your head of when your

loved one was so very sick, and you just can't seem to get it out of your mind?

This happens to me now and then and I get so very sad. This morning I looked

over at my husband sleeping and remembered last year at this time when I would

spend entire days on end sitting on the bed beside him, and being so thrilled

when he would eat 2 bites of food. I get a mental picture of this and then I

burst out crying and he can't figure out what's wrong with me. I don't want him

to feel guilty for having me go thru all that. I can't talk to my friends about

it because they haven't been thru it and are totally clueless. Just puttin it

out there. Maybe someone on this group will understand. Hope I haven't upset

anyone. You are all so very dear to me. Love, Jackie

[Guest guest]

Thanks, Bobby.  You really hit the nail on the head.  I think post traumatic

stress is the problem, and perhaps time will heal the wounds.  Sometimes I get

these memories that just pop into my head and they just stay there.  I remember

a few months ago I was home alone and cleaning out and painting my son's room. 

All of a sudden I got this mental picture of my husband sitting on the bed and I

was feeding him baby food.  I had put a spoonful in his mouth and he rolled his

eyes and passed out--right into the bowl of food.  It was all up in his hair

and everything.  I could not get this picture out of my mind.  I sat down and

cried so hard.  I hadn't cried like that in about 2 years (because while he was

sick I was too busy and too scared to cry).  While I was crying he came home,

and he had a bouquet of flowers for me.  I asked him " how did you know? " and

cried more.  Sometimes these visions just appear.  I am writing a book about

our

experience, so maybe that's what's triggering it.  Some days I sit down and

write pages.  So far I have 21, single spaced on a full page with only spaces

between the paragraphs.  Yeah-there's alot to tell.  Thanks to all on this

group for just being there to listen.  I think about you guys every day and if

I were physically closer I would run over there and lend a hand on your bad days

since I am so good at this now, having gone thru it.  On that note, hope you

have a good day today.  As always, keeping you in prayer.  Jackie

Subject: Re: Question for some former caregivers

To: livercirrhosissupport

Date: Saturday, January 15, 2011, 2:18 AM

 

Dear Jackie, I often think back at the time when Ardis was here with us. Taking

care of her permanently changed both my wife and myself. I do remember the joy

of winning those little micro battles, like getting them to eat two spoonfuls of

food, getting the doctor to realize that a low sodium diet is going to kill them

because the patient isnt eating 2000 mg of FOOD per day, so how the hell can low

sodium be an issue. I have learned so much since then,and I am grateful that

Ardis left me a trail to follow-to live instead of die. . I do have images in my

head of when my loved one was very ill, but since our outcome was different, all

I have left is the memories, memories I made as a result of knowing that she

was going to die. There are poems and songs written about it, and many people

try ever so hard to " live like this day is your last one " or " make every

day count " . but very few are able to actually do it. is very very blessed

to have you.

I remember how you fought for him top get this liver and save his life. No doubt

you have some emotional scarrs, and you would do well to take good care of

yourself. Maybe you should talk to someone... just a suggestion. You would be

totaslly normal if you had some post traumatic stress syndrome going on.

Remember, it is about mind-body-spirit.

Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Wed, January 12, 2011 8:36:02 PM

Subject: Question for some former caregivers

Hi All: Been following the posts and thinking of you all. Hoping and praying

this new year will bring good things for all. My husband will be 8 months

post-transplant on the 26th of this month. He's doing well and has now

" graduated " to seeing the transplant drs every 3 months instead of once a month

and getting bloodwork done once a week instead of twice a week. That should

make us happy, right? It does, but I have a question for some of you who have

been caregivers. Do you ever get these mental images in your head of when your

loved one was so very sick, and you just can't seem to get it out of your mind?

This happens to me now and then and I get so very sad. This morning I looked

over at my husband sleeping and remembered last year at this time when I would

spend entire days on end sitting on the bed beside him, and being so thrilled

when he would eat 2 bites of food. I get a mental picture of this and then I

burst out crying and he can't figure out what's wrong with me. I don't want him

to feel guilty for having me go thru all that. I can't talk to my friends about

it because they haven't been thru it and are totally clueless. Just puttin it

out there. Maybe someone on this group will understand. Hope I haven't upset

anyone. You are all so very dear to me. Love, Jackie

[Guest guest]

You've been through enough already. We all appreciate that you've stayed for a

while. So many people flee either when their loved one dies or gets

transplanted. I cannot blame them, though. It is really special when people whom

say are your friend actually act like it. My heart ache after Ardis died has

subsided a great deal, but I think of her every day, and do AA and this group in

her name. She would have done the same thing. She was a very smart and generous

person.

I can see that you have been through hell and back. A book is a good idea. I did

the same thing, and it really helped put things in perspective. Of course mine

is the PG rated version of what really happened. There were several unspeakable

things and dozens of others that are just too painful to dredge back up. The

hospital experience really could have shattered my faith in modern medicine if I

let it. A person had better hope that thier loved one is really watching over

them, and willing and able to learn some medical things, because not everyone in

a hospital uniform is on the ball.

I caught them giving Ardis things she was allergic to time after time. I got

people in trouble, and earned some bad Karma maybe. Those nurses were just too

over whelmed. I am glad you have stayed in our group. Hang in there, and tell

to do the same.

Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Sat, January 15, 2011 6:31:54 AM

Subject: Re: Question for some former caregivers

Thanks, Bobby. You really hit the nail on the head. I think post traumatic

stress is the problem, and perhaps time will heal the wounds. Sometimes I get

these memories that just pop into my head and they just stay there. I remember

a few months ago I was home alone and cleaning out and painting my son's room.

All of a sudden I got this mental picture of my husband sitting on the bed and I

was feeding him baby food. I had put a spoonful in his mouth and he rolled his

eyes and passed out--right into the bowl of food. It was all up in his hair and

everything. I could not get this picture out of my mind. I sat down and cried

so hard. I hadn't cried like that in about 2 years (because while he was sick I

was too busy and too scared to cry). While I was crying he came home, and he

had a bouquet of flowers for me. I asked him " how did you know? " and cried

more. Sometimes these visions just appear. I am writing a book about our

experience, so maybe that's what's triggering it. Some days I sit down and

write pages. So far I have 21, single spaced on a full page with only spaces

between the paragraphs. Yeah-there's alot to tell. Thanks to all on this group

for just being there to listen. I think about you guys every day and if I were

physically closer I would run over there and lend a hand on your bad days since

I am so good at this now, having gone thru it. On that note, hope you have a

good day today. As always, keeping you in prayer. Jackie

Subject: Re: Question for some former caregivers

To: livercirrhosissupport

Date: Saturday, January 15, 2011, 2:18 AM

Dear Jackie, I often think back at the time when Ardis was here with us. Taking

care of her permanently changed both my wife and myself. I do remember the joy

of winning those little micro battles, like getting them to eat two spoonfuls of

food, getting the doctor to realize that a low sodium diet is going to kill them

because the patient isnt eating 2000 mg of FOOD per day, so how the hell can low

sodium be an issue. I have learned so much since then,and I am grateful that

Ardis left me a trail to follow-to live instead of die. . I do have images in my

head of when my loved one was very ill, but since our outcome was different, all

I have left is the memories, memories I made as a result of knowing that she

was going to die. There are poems and songs written about it, and many people

try ever so hard to " live like this day is your last one " or " make every

day count " . but very few are able to actually do it. is very very blessed

to have you.

I remember how you fought for him top get this liver and save his life. No doubt

you have some emotional scarrs, and you would do well to take good care of

yourself. Maybe you should talk to someone... just a suggestion. You would be

totaslly normal if you had some post traumatic stress syndrome going on.

Remember, it is about mind-body-spirit.

Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Wed, January 12, 2011 8:36:02 PM

Subject: Question for some former caregivers

Hi All: Been following the posts and thinking of you all. Hoping and praying

this new year will bring good things for all. My husband will be 8 months

post-transplant on the 26th of this month. He's doing well and has now

" graduated " to seeing the transplant drs every 3 months instead of once a month

and getting bloodwork done once a week instead of twice a week. That should

make us happy, right? It does, but I have a question for some of you who have

been caregivers. Do you ever get these mental images in your head of when your

loved one was so very sick, and you just can't seem to get it out of your mind?

This happens to me now and then and I get so very sad. This morning I looked

over at my husband sleeping and remembered last year at this time when I would

spend entire days on end sitting on the bed beside him, and being so thrilled

when he would eat 2 bites of food. I get a mental picture of this and then I

burst out crying and he can't figure out what's wrong with me. I don't want him

to feel guilty for having me go thru all that. I can't talk to my friends about

it because they haven't been thru it and are totally clueless. Just puttin it

out there. Maybe someone on this group will understand. Hope I haven't upset

anyone. You are all so very dear to me. Love, Jackie

[Guest guest]

It is a joy for you to share your special memories of Ardis with me.  I feel

priveleged to have " known her. "   And with the friendships I have made on this

group I plan to stay on indefinitely.  I feel as if you guys are the only ones

who truly understand, and I can credit you all with teaching me everything I

needed to know about liver disease.  (sometimes I even learned more than I

needed to know but it all turned out to be useful.)  Each one on this group, I

feel, has played an important part in 's survival, and you can be sure this

group will get plenty of publicity in my book.  Whenever the urge strikes me I

write, sometimes pages at at time.  I am up to the part where we had the

encounter with " Dr. House " at 's first evaluation.  When you mention some

things that are too awful to repeat, it reminds me of 's first day at a

local skilled nursing facility while waiting for his new liver.  They wheeled

him down the hall in some kind

of contraption for a shower.  What an ordeal that was!  They wheeled him into

a stall and literally hosed him down.  It was so un-dignified and awful, too

awful to put in the book.  I will mention them, however not by name.  was

the first and only transplant patient they had and they were utterly clueless on

how to take care of him.  I had to review his meds with each set of nurses who

came on duty and explain the whole proceedure to them as to what to do if the

transplant center called.  I also told them they were to call me anytime, day

or night, if they experienced anything unusual.  The 2nd day he was there I

noticed he was lethargic and I told them his ammonia level was up.  I told them

they had to give him an extra dose of lactulose, and they didn't want to do it

because the dr. (who he had never met) didn't order it.  The chart said he was

only to have 3 doses a day and he had already had 2.  I asked them what they do

when a

diabetic patient has high blood sugar and they told me they give him/her extra

insulin.  I told them that lactulose works the same way.  The dose is

adjustable.  They looked at each other perplexed and I told them to pour some

in a little cup and I would give it to him so they wouldn't get in trouble with

the dr.  Thank God he only spent 5 days in that facility.  Well, my good

friend--like you say.  I have been to hell and back.  It's all behind us now,

and I can look forward.  But you can all be assured--I will never, never forget

my good friends on this group.  Love to all.  Jackie

Subject: Re: Question for some former caregivers

To: livercirrhosissupport

Date: Saturday, January 15, 2011, 2:18 AM

Dear Jackie, I often think back at the time when Ardis was here with us. Taking

care of her permanently changed both my wife and myself. I do remember the joy

of winning those little micro battles, like getting them to eat two spoonfuls of

food, getting the doctor to realize that a low sodium diet is going to kill them

because the patient isnt eating 2000 mg of FOOD per day, so how the hell can low

sodium be an issue. I have learned so much since then,and I am grateful that

Ardis left me a trail to follow-to live instead of die. . I do have images in my

head of when my loved one was very ill, but since our outcome was different, all

I have left is the memories, memories I made as a result of knowing that she

was going to die. There are poems and songs written about it, and many people

try ever so hard to " live like this day is your last one " or " make every

day count " . but very few are able to actually do it. is very very blessed

to have you.

I remember how you fought for him top get this liver and save his life. No doubt

you have some emotional scarrs, and you would do well to take good care of

yourself. Maybe you should talk to someone... just a suggestion. You would be

totaslly normal if you had some post traumatic stress syndrome going on.

Remember, it is about mind-body-spirit.

Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Wed, January 12, 2011 8:36:02 PM

Subject: Question for some former caregivers

Hi All: Been following the posts and thinking of you all. Hoping and praying

this new year will bring good things for all. My husband will be 8 months

post-transplant on the 26th of this month. He's doing well and has now

" graduated " to seeing the transplant drs every 3 months instead of once a month

and getting bloodwork done once a week instead of twice a week. That should

make us happy, right? It does, but I have a question for some of you who have

been caregivers. Do you ever get these mental images in your head of when your

loved one was so very sick, and you just can't seem to get it out of your mind?

This happens to me now and then and I get so very sad. This morning I looked

over at my husband sleeping and remembered last year at this time when I would

spend entire days on end sitting on the bed beside him, and being so thrilled

when he would eat 2 bites of food. I get a mental picture of this and then I

burst out crying and he can't figure out what's wrong with me. I don't want him

to feel guilty for having me go thru all that. I can't talk to my friends about

it because they haven't been thru it and are totally clueless. Just puttin it

out there. Maybe someone on this group will understand. Hope I haven't upset

anyone. You are all so very dear to me. Love, Jackie