Wednesday, March 19, 2014

Parents with End Stage Liver Failure

    I've been a blogging slacker.  This life we live has been abundantly full.  There has been plenty of blessings and grace; there has also been plenty of struggles and sorrows.  One of the primary things our family has been dealing with is my mom's liver failure.

    About a year ago, my mom was diagnosed with liver failure and was told she must stop drinking.  The battle has been long and frustrating.  Addiction is powerful stuff.  Powerful.  The web of lies an addict spins and even believes  is astounding.  Ridiculous really.  The stories I could tell...BUT I will suck them in, for the time being.  Anyhoo, mom's liver is failing and her chance of getting a liver transplant is virtually nonexistent.

      My mom was able to disguise most of her liver failure symptoms until this January when everything went to hell in a hand basket.  In January, her abdomen swelled up like a balloon, and correspondingly her legs and feet became extremely swollen.  She became extremely confused- dementia like symptoms.  She spent the better part of three weeks in the hospital and detox center.  Later she was transferred to a nursing home, a brief stint at my grandma's, and then an assisted living facility.  Yesterday a friend showed up to the facility and checked her out; apparently prepared to take care of my mom.  Good luck, buttercup.

    This journey has been difficult to say the least.  Aside from the knowledge that eventually my mom will pass away, the most difficult issue has been the lack of information available for families who have someone in end stage liver disease.  We had a kind, albeit unhelp police officer tell us that the addict is the families problem.  Great.

    Here are a few things we have learned on this journey.  I want to note, that this is not medical advice.  I just know that these are things that we have learned on our journey- each journey is different so my suggestions might not work for you.

1.  If your family member is hospitalized and you are told they cannot live alone; do not say that you will take care of them.  Simply and firmly tell the hospital staff they have no where to go.  Be consistent.  The Social Worker will find a facility to place your family member.  

2.  If asked if you can care for the patient- say NO.  Keep saying no.   It is important your family member is in a safe place emotionally and physically for both the patient and family.

3.  Love your family member, but do not enable them.  We have found that we can love my mom; but her habits and addictions do not change magically just because we want them to. 

4.  Have realistic expectations.  If your family member abused alcohol or prescription drugs up to this point; expect them to struggle and recognize the addiction is still an issue.  Chances are, if medications or alcohol is available, they will take them.

4.  Expect manipulation.  We've found this to be true; almost like the worst of herself comes out in this time of trouble.

5.  Pray.  Pray. Pray. 

6.  Surround yourself with a couple close friends.  If you don't have close friends, seek out a counselor; better yet checkout a local church and get plugged in.  I have two friends who I can say anything to-  crazy things.  No matter what they love me, laugh with me, cry with me, and even do crazy things like pack up my mom's house with me.

7.  Guilt sneaks in.  Love the person, but have clear boundaries.  This is not your fault.  It's not your neighbors fault, your brother's fault, or your sister's fault.  Drug and alcohol addictions are a disease and a choice. 

8.  Talk to your local Hospice.  I have a friend that is a Hospice nurse, and she has been a gem to talk to- highly educated and realistic.  She's been very helpful.  Best advice she has given me is a phrase of words- "I'm sorry I can't take away the consequences of your choices." 

I love my mom, and this journey has been very painful, but I know one thing to be true God is good everyday.  I know my peace comes from Him and He has a plan despite the circumstances.  And I know His plan is a good one.

Blessings to you and yours!