Re: New member looking for guidance

[Guest guest]

>

> Hi! I am a new member to this group. I have joined because my

younger sister (34)that I love very much has been diagnosed with

stage 4 liver failure from cirrhosis due to drinking and overuse of

Tylenol 3, liver disease also seems to run in the family much to my

surprise. I am seeking knowledge to understand what she is feeling

emotionally and physically and the best way to understand, guide, and

help her. I have always been a very independent strong person, much

different than her, and I believe knowledge is empowerment.

*********************

Welcome. End stage cirrhosis is heart wrenching to deal with, for

you, for your sister, for your family and for her friends. I think

the first thing I had to face were the " how'd this happen to you? "

questions and looks. Ya know what? It doesn't matter. What is,

is. Very few of us actually lived the lives we imagined when we were

12 - whether we drank too much, used drugs, or were innocent victims

of whatever is bringing us down doesn't matter. What matters is that

this person that you love is on an incredibly powerful journey to the

end of her life. I faced some friends that knew that I'd brought it

on myself and stuck their moral noses in the air and cut me out. So

be it. I don't have enough time left for those " filler people "

anyway. My first thoughts were about finalizing my affairs, so

that's what I did. I got a will, a living medical directive, and

power of attorney for my daughter so that in intense brainfog times

she can handle my buisiness. I made my life as automatic as I could

with Bill Pay, mailed prescriptions, a detailed calendar hanging on

the fridge. I think all of that helped me think clearly about dying -

and I think I needed to do that right away. That was three years

ago and I'm still going strong. I think I needed to get the

preparations done so that I could stop thinking about it and try to

live again.

On that note, I also decided that if I had a limited lifespan I

wanted to see if there was another way to live it. As it turned out,

my company had an excellent short and long-term disability program

which I was able to take advantage of. I stopped working. I

qualified for SS disability. My family stepped up and helped me.

I've always wanted to travel. In the last couple of years my son and

I went to Italy and to Hawaii. My daughter and I have travelled

together too and have become closer than we've ever been.

I guess what I'm trying to say, is in my life the people who have

helped and loved me the most were there to listen, to love me, not to

in any way judge me, to accept the fact of my dying and help me think

of the things I needed to do. They were and are willing to listen to

my morbid wanderings and parceling out of possessions without

overwhelming me with sadness. They want to spend time with me -

whenever I can - doing whatever I can manage at the time.

Next month I'm celebrating my 55th birthday. None of us thought I'd

make it, so I'm really celebrating - I've rented a huge house at the

coast for my whole family and invited my friends old and new. There

are stages to get through before she comes to acceptance, but if you

can help her understand that she has a limited time to LIVE, rather

than waiting to die, there is still fun to be had!

Good luck to you and your sister.