my mom has cirrhosis esld from alcohol .... I feel hopeless and lost and need to vent

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jesm81
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/18/2010 12:45 PM (GMT -7)   

My mother, who will be 51 next month was diagnosed with cirrhosis of the liver / end stage liver failure.  She has been a heavy drinker as long as I can remember.  My dad, my brother and I have tried to get her to quit over the years on countless occasions, but she was always in denial or said that drinking made her happy and she wasn't going to stop.  I always prayed that one day she would have a wake up call and quit … and that day finally came, except it is probably too late. 

 

She went to the ER on July 4th with a swollen stomach and legs and was told that she was in the final stages of liver failure.  She never had symptoms (that I am aware of) before that.  It has only been a little over a month since her onset of symptoms and now she can't walk without falling, she sleeps almost all day and has trouble staying awake. Her muscles spasm and her back and neck are constantly in pain.  She has lost a lot of weight and aged significantly.  She looks like she might be 90 pounds, and although she has always been a tiny skinny woman, she looks emaciated, pale, and just plain awful.  She needs to go to the hospital to have fluid drained from her stomach and legs.  Her voice is hoarse and my dad said she had a bout of coughing for about 4-5 days, which stopped  but the voice is still hoarse.  When I saw her on Saturday she was pale white and didn't move from the couch.  She could barely open her eyes, but she did speak (more like mumble) to me.  She was coherent but it was almost like she couldn't muster up the energy to speak loudly and I had to ask her to repeat herself several times.  Sometimes she complied, other times it was like she was just drifting back to sleep. 

 

The doctor told her she needs to be sober for 6 months to get on the waiting list for a liver transplant.  At this point she is too ill to drink so there is no chance she is going to relapse.  There isn't a drop of alcohol in the house and my dad and brother say she has been 100% sober since June.  I'm not sure why she stopped drinking about a month before her trip to the ER, but I suspect maybe she did know that something was not right.  I am trying to stay positive, but I'm afraid she won't even make it 6 months to get on the list, and even if she could become a candidate, who knows how long it will be before a liver is available.  I am also afraid that, if by some miracle, if a liver would become available, she would be too ill to get the transplant.   

 

My younger brother is 23 and his wife just gave birth to her first grandchild on Saturday, August 14.  I can't even begin to tell you how excited my mom has been about this baby.  It is heartbreaking that she is too weak and disoriented to get out of bed or hold her new grandchild.  It breaks my heart to think that she will never hold my child if I have one.  It saddens me that my dad refused to leave my mother at home to go to the hospital and visit his grandson.  I offered to stay and watch my mom so he could leave the house, but he refused. And it is unfair to my brother that the birth of his child, one of the most joyous occasions in his life, was clouded over by this.  My mom and dad should have been there at the hospital …  laughing and crying, and holding that adorable baby.  My husband and I were there, but I know it wasn't the same.

 

I know, I know …  life isn't fair, right?

 

I just hate what is happening and my emotions are everywhere.  My dad won't tell anyone else in the family what is going on because my mom doesn't want anyone to know. So family members have started to call me for information … am I supposed to lie too?  Obviously everyone knows something is wrong.   I had to finally break it to my grandma (her mother) and I felt awful about it but she has the right to know.  My grandma has known something is terribly wrong but all she gets out of my dad is that "she is sick with an ulcer".

 

My emotions are everywhere right now.  Yesterday I researched about giving part of my own liver to her … I just ordered a blood test kit online to find out if I'm a match.  I'm 29, healthy as far as I know, and don't smoke or drink at all.   I know my mom did this to herself, but people do other things to themselves all the time … smoking, drugs, obesity related diseases, etc.  I guess I just feel this way … she is my mother, I don't want her to die, if there is anything to save her I will do it.  I love her.

 

Of course the living donor thing is a far stretch, and I know it.  Another part of me (and I feel bad) prays that if there is no hope for her, that she will go quickly.  My dad is only 52 and still has to work, and I don't want him to be burdened as her full time caretaker and helplessly watch as she continues to suffer.  My dad works full time, I work full time and live far away, and my brother just had a baby.  Can she go to a nursing home?  I have no idea.  I feel like there is nobody to take care of her and my dad has to make a living.  He has been taking vacation days lately to stay home with her.

 

My mental state goes from hoping she goes peacefully, to praying for a miracle that she recovers somehow, to contemplating donating my liver to her.  I cry several times a day.  I feel hopeless.

 

Thank you for taking the time to read this.  I hope that  if you, or someone close to you has a drinking problem, that help is sought before it is too late.  Less than two months ago my mom was fine, making plans for a vacation and the arrival of her new grandchild and today she looks like she is weeks, if not days away from death.  It is the saddest thing ever.

 

I also appreciate everyone who posts on these forums.  I know that I have some friends and family I can talk to, but I still feel so alone.  After reading these forums, I don't feel so alone anymore.  Thanks again.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/18/2010 1:12 PM (GMT -7)   

Jesm81, welcome to the forum.  What can I say?  It's a terrible situation.  You do have lots of company here...people who are going through what you are or have.  I do want to clear up one thing:  Most transplant centers (if not all) require 6 months of DOCUMENTED sobriety in AA or alcohol counseling before they will even EVALUATE for a liver transplant (which is a long process in itself.)  There are few centers that will do a living donor transplant.  In fact, a donor in Denver, CO recently died so that center has stopped all living donor transplants for the time being.

Depending on the type of insurance they have, your parents should be able to get some help in the home if prescribed by your mom's doctor.  This could be a nurse's aid or visiting nurse.  As far as a nursing home, it would depend somewhat on insurance, but would be harder to place her since she has family that can help out and is not receiving IV meds or therapy that would require her being inpatient.  If her doctor thinks she has 6 mos. or less to live, Hospice can be called in.  They will send nurses to the home.  These are all things that your dad should discuss with her doctor.

Personally, I think your dad and you should be honest with family members about what is going on with your mom.  I doubt that her drinking was a secret.

Hugs,

Connie

It's very important that you take care of yourself and not become so involved with what is going on with your mom that you get stressed out and are no good to anyone.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 8/18/2010 7:59 PM (GMT -7)   
jesm81, Connie is right, be honest with family, take care of yourself and there is help for your Dad. This needs to start with her Dr requesting what her insurance will cover. I know this is a tough time for everyone and family support is important so the honesty with family needs to be done. Maybe family can help your dad also, sometimes people feel to blame for what is happening and your dad is probably thinking if he had been more insistant or what if this or what if.......the list goes on, then things would have been different. He shouldnt feel responsible for your moms condition but human nature makes us feel like we played a part in it. This may be why he didnt go to see the new grandbaby, why he doesnt want to leaver her even for a minute! Making sure she is taken care of is sometimes a way of making up for all you think you did wrong even when you did nothing wrong. Be patient with him and just let him know you love him... even a phone call to tell him so.
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.

Post Edited (shadowsghost) : 8/18/2010 9:06:56 PM (GMT-6)


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/18/2010 10:22 PM (GMT -7)   
The signs of her illness were there long before July 4th... everyone is in denial... and her partner certainly saw some of the smaller things but ignored them  and of course she probably did too... everyone puts their head in the sand until it's too late... well not always.. such a loss
you are grieving for your current loss and realizing the possiblity of the loss of her in the future and all of the lives that she has impacted and would have impacted... and this dawns on you and leaves one hollow inside... bereft of emtions... and then one still has to deal with the day to day reality... and all of your family issues... it is very complicated... and then one wants to "save" the person... I think I would have given my life for Mike's in trade... and sometimes asked God to take my life... and I bargained and bargained... in the end it was Mike's prior life choices that made the decision... and I did all I could until the day he took his last breath... and still sit here shocked... missing him.. and so take care of you.. it's a harsh thing to be pushed into so fast... my thoughts and prayers are with you and your family at this time..
There is no pit so deep that He is not deeper still... Corrie Ten Boom

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/18/2010 10:46 PM (GMT -7)   
Hello jesm81, and welcome to HealingWell. My heart hurts for you. No daughter wants to see her mom this way.

Your father is going to need help with her care at some point. Connie's suggestion of finding out what their insurance will cover is a good place to start. Some plans cover visiting nurses, convelscent hospitals, some medical equipment like oxygen,walkers,etc. My insurance even paid hospice to care for my husband. If your dad doesn't know......usually employees can talk with their HR dept and they can tell him what's covered.
There is also FMLA which will protect your dad's job if his company has at least 50 employees and he has been employed there for at least a year. Some states will pay for him to stay home with her if he qualifies for FMLA. California pays about 66% of a person's gross wages for up to 6 weeks.

Count me among the ones that think other family members should be told. Your dad is going to need a lot of support to get through this.

Take care.......thoughts and prayers.....
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

spookyjan
Regular Member


Date Joined Jun 2010
Total Posts : 74
   Posted 8/19/2010 8:17 AM (GMT -7)   
hello jesmi i dont often post becauce i usually just want advice my self an feel i am no expert to be able to answer posters queries.however i can really relate to all you have said..i dont want to start telling you all about my dad,but he is in the same situation as your mum.we feel as you do that it all happens so quickly this decline that you feel you are on a roller coaster.as another poster said your mum will have had symptoms before it all got serious,as my dad did.all you can do is go with the flow as i am doing.dont blame yourself or anybody else for things you should have spotted,chances are your mum,as my dad saw the signs an didnt say anything.life will be tough in the near future,deal with it as best you can.as for telling other relatives an friends that is what my mum is doing saying..
"he has an ulcer"thats your dads way of dealing with all the questions from everyone,i know you feel you are lying to others when they ask but lets face it,sometimes you just could not tell the people who enquire just what you are going through.stick with your family who do know an seek strenth from them,i am indeed closer to my sister now since dad got ill. i wish you well an just knowing peeps are here for you is good,you can share with others on here the frustration,that you cant share with your family.take care of you thats important.   spooky x
 

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 8/19/2010 1:08 PM (GMT -7)   
hi jesmi, i know exactly what you are going through as my mom had cirrhosis from alcoholism and hep c from lord knows where. it will be a long bumpy road in which i suggest learning as much as you can about the disease. has she seen a hepatologist? do they have her on lactulose or spironaldactone and lasix? while they dont cure it they will make her feel a little better. lasix is a dieuretic and will keep the fluid down and spironalcactone is potassium to counteract what the lasix will lose and the lactulose will help with her amonia levels. she needs to make sure she eats food that are low in salt and no red meats as her liver wont be able to process them. there is no sense lying to the family as im sure they already know something. my mom was lying to my cousin and i found out later that my cousin already knew and still let her live with her and her kids. someone needs to go to her doctors appointments and make sure she understands what they say or else she wont remember. it will be a good idea for someone to have power of attorney and a will for her. make sure she knows you love her and just spend what you can with her and not worry about the future. your dad will need some help as this is a vvery tiring disease. i had no help really with my mom as my sister was in denial and i missed a lot of work and wore myself thin. good luck and know you have help here.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are
 
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/19/2010 3:07 PM (GMT -7)   
Just a small correction about spironolactone (Aldactone):  It is not potassium but is a potassium-sparing diuretic.  It counteracts the potassium lost with Lasix, but is sometimes taken alone without the Lasix.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

evee311
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/16/2011 3:36 PM (GMT -7)   
jesm81 are you okay? hows everything my gosh i read your post & i feel like i wrote it i feel your pain im going thru the exact same emotions as you are, if you need anything i am here

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/16/2011 3:49 PM (GMT -7)   

evee311, You picked up on an old post from last Aug.  I don't know what ever happened to JesM91's mom, as she never posted again, but I don't think it was a good outcome.

I'd like to welcome you to the forum and request that you start a new thread to introduce yourself and your situation.  Just hit New Topic instead of Reply and give it a title.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland
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