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Posted 7/17/2011 2:50 PM (GMT 0)
Hi All,  I am new to this and really just need some support.  Do not get me wrong I have plenty with hospice and friends and family but I still feel very much alone on this journey.  My husband was diagnosed with ESLD two years ago.  He is not eligible for a transplant due to his age (75) and the fact that he has Parkinsons and diabetes.   We are on all the meds. everyone else is talking about the lactulose, Xiafaxan, propananol, lasix and a few others.  He has ascites and varices.  At the begining he almost died from esphogeal varices but 11 bands later he is still with me.  Over the past month he has shown a real decline, that's when I asked for hospice.  I really want to keep him home and it has been a real struggle keeping my job, paying for a caregiver and taking care of him.  Overall, I think I am doing pretty well but every now and then, Like now it catches up with me and I go to that dark place of wondering how much longer this will go on, and of course I feel guilty about that.  He sleeps most of the time and the only good news is he still likes to eat and he is in no pain.  I can only afford to have the caregiver so much and so most of this is on me.  Stupid stuff requires thought like getting to the grocery to pick up a few items.  I know people are telling if I need anything ask.  I guess I am reluctant to too much because I have no idea how long this journey will be and I do not want to use up their goodwill too early in the game.  It feels good just to share this.  anniemc   
Posted 7/17/2011 3:30 PM (GMT 0)
Hi Anniemc, you have certainly come to the right place! One of the moderators will be along soon, to welcome you also. This forum is wonderful! I was having some real dark days myself, when i joined. My husband has ESLD, diagnosed over a year ago, and was turned down for the list due to too low of a MELD score. Finding this forum turned me around and also educated me. My spelling of medical terms is still not great, but the people here are full of love, and truely care about each other and their situation.
I lost my Mom 3 years ago to Liver Cancer. There was nothing I could do except make her comfortable. Hospice was fantastic!! She wanted to be at home, but I hurt my back, and she spent her last 12 days in a Hospice facitlity. She was actually better off, because after she passed, I realized there was no way I could have given her the excellent care she got there!!I was there alot, 24 hours a day the last 3 days. My Dad was there 4 times a day. Between the two of us, she spent very little time alone. It was a small town too, so all of the nurses and doctors had known her for years and years.
Alot of people knew I had been taking care of my Mother, and offered to help, anything you need, things like that. I like you was reluctant, and the few times I broke down to ask I was let down. Not all people are that way, but it was very dissappointing. I probably chose the wrong persons to ask!!Hospice was very dependable, other than that I counted on myself . . no let down that way!
Through all of this, please remember to take care of yourself!! Something like this is mentally and physically exhausting . . so you must think of yourself too. We are here for you, so feel free to visit often. We have a "Care Givers Sharing Thread" if you look there you will see alot of spouses going through alot of painful moments . . .you will also see the love and support they recieve from the members!!

WELCOME!!
My prayers are with you!

Debbie
Posted 7/17/2011 4:48 PM (GMT 0)

Hello, Anniemc, and welcome to the forum!  I think that Debbie pretty much said it all.  You might want to check out the info in the folder Hepatitis Resources, at the top of the topics page.  It deals with liver disease in general and not just viral hepatitis.  You will get an idea of what is to come.

I'm glad to hear that you have gotten Hospice involved.  They are a wonderful organization and so helpful to caregivers.  As Debbie mentioned, also check out the Caregivers thread here.  You will receive a lot of support from those who are going through what you are, or have in the past.  It's a good place to vent, too.

This disease is really hard on caregivers.  So please remember to take care of YOU in all of this, and schedule some "me time."  You need it to recharge your batteries.  I've found it very difficult to ask for help, but it goes better if I say exactly what I need.  For example, when going through TP eval., people would say to let them know if I needed anything.  I would thank them and then tell them that I might need a few rides to and from Mayo (only 12 min. from me, but I don't drive.)   I usually take a van service, but there are times when I don't want to wait for it. 

You will find a lot of info and support here.  Again, welcome.

Hugs,

Connie

Posted 7/17/2011 5:15 PM (GMT 0)
Welcome Annie, glad you found us............not glad that you had the need to though.

My husband died in 2007 of liver disease.......he was only 46. Like you I was juggling work and caregiving which almost killed me. I wouldn't ask for help. Dummy me. If I could do it over again.........I would have swallowed my pride asked for help.
When he finally ran out of options I had to call in hospice. I second and third, that they are a wonderful organization.

There are a number of us who are or have been in your shoes........so we totally understand your feelings. Take care............see you on the caregiving thread.

Thoughts and prayers..........
Posted 7/17/2011 11:18 PM (GMT 0)
Thanks Debbie, Connie, and Pink Grandma, Your notes of encouragement gave me the courage to ask for help from people from my church and they came through wonderfully I have coverage for the hour in the morning and the hour at the end of the day for the whole week!! God bless you all and I will keep in touch. AnneMc
Posted 7/17/2011 11:32 PM (GMT 0)
Way to go, Anne! Please do keep us updated.

Hugs,
Connie
Posted 7/18/2011 12:06 AM (GMT 0)
Yep its a tough row... no one know how long... I did the same thing... took care of Mike during the day... he refused help while I was gone... so I had to worry about if he'd be alive when i got back... and it went on... and on it seemed... its a year in April since he passed... seems like yesterday... I would say take a deep breath every day ... ask for the strength... wisdom.. and courage to get through each moment... ask for help as you need it... you will find people will help.. God will supply your need... as you go... take care ... with prayer... Sandia
Posted 7/18/2011 1:22 AM (GMT 0)
Annie,

So glad you have found us. I, too am a caregiver. Yes, being a caregiver can be a very lonely place to be when it comes to ESLD, or any other major illness. I have friends and a great support group, but with that being said, this forum has been a lifeline for me, because even my closest friends don't TRULY get what it's like to watch someone go through this in your house.

Hospice is a wonderful organization. Accept the help from your friends at church, that's what they are there for. Many of them probably wanted to do something but did not know what. By asking, you are giving them the gift of them being able to support you!

You take some time for you and do something special for you!

Mer
Posted 7/18/2011 2:57 AM (GMT 0)
Hi Annie and welcome!
I too am a caregiver for my husband who has ESLD due to alcohol and he still drinks. Being a caregiver is tough on you in more ways than one. Financially, emotionally, and physical are just a few ways that it affects you and your life. I have learned that there is only so much a human being can do, and the rest is up to God. He will only put as much on you as he feels you can handle, but I know sometimes that feels like too much. I have found that reading and educating myself is one of the best things I have done. And what I can't find there, I just ask here. It helps you to know what to look for and when to recognize when something is not right with your loved one. There are many here who are willing to share their stories and experiences with you. So don't be afraid to talk about or ask anything.
We are happy to support you as others have supported us.
Take care of you!
Posted 7/18/2011 10:49 AM (GMT 0)
Hi All, Thanks so much ESLD and still drinking, that sounds really tough. Thankfully my husband gave up the drink 3 years ago, unfortunately the damage was done. How do you give yourself a break? I find that there is always something that needs to be done and then before I know it the day is over.

Last night was rough here, he was awake alot and that meant so was I and now I am up trying to get us both ready for the day. I am wondering how I will get through a day at work because I feel exhausted but I am sure that will pass once I get moving. To all of you going through this know you have a friend in me. This stuff is not for sissies! I wish you all a peaceful day. Anne
Posted 7/18/2011 3:19 PM (GMT 0)
No it's not....You have to be a strong person to handle it. Many times I have my time when he's sleeping. Because when he's awake, you're right, there's always something that needs to be done. If I do nothing more than sit on the couch and stare at the wall...that's ok...sometimes that's therapy enough for me! Just any type of quiet time means everything.

Good Luck in finding yours! :)

Posted 7/18/2011 3:40 PM (GMT 0)
Annie, I finally let myself know it's OKAY for me to go out to lunch w/ the girls every once in a while, etc. I even treat myself to a pedi every couple of months just for that extra little pampering

Mer
Posted 7/18/2011 6:32 PM (GMT 0)
Mer, I as well decided to treat myself to life! I've been my mom's caretaker since i was 12 yrs old ( im 40) and she's now ESLD. As we all know how hard it is to see someone you love slip away..however, she is still among the living..will continue to fight for her and understand the concept i am still ALIVE! I wont be any good to myself nor to her if i let myself go.... I need my SANITY lol


Bibi
Posted 7/18/2011 10:07 PM (GMT 0)
Turned out to be a fun day at work which this whole situation has caused me to appreciate more and more. Home from work, paying the bills and getting supper ready. Got some great news today my brother is coming over on weds so I can go to the beauty parlor whopppeee!! I feel like this is going to be an okay week. Knowing that you are all going through this too is tremendously helpful to me and I wish you all the strength to persevere,hearing that its okay to want to escape every now and then is helping. Thanks so much really glad I found all of you and will stay in touch.
Posted 7/19/2011 12:06 AM (GMT 0)
Anniemc, it is ok to escape ! Have a awesome time...=)
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