end stage of liver diease due to alcohol

hi i am brand new to this my father is 68 yrs old and currently on comfort care due to many years of being a heavy drinker, we are told that he is in the final stages of liver failure. He has stopped drinking cold turkey since june, 2008.... he then started to get very sick in and out of the hosptial hes currently in the hospital now, he has diabetes and this past time his blood pressure was 67/47 and he couldnt breathe well, he was just admitted again to the hospital......... he now isnt currently taking any meds just morphine when hes in pain which is 2mg every 4 hours as needed..... also he doesnt eat or drink a lot and is bed ridden. about 2 weeks ago sunday he was admitted to the hosptial because his toxin levels were very high, he was very combative and didnt know anyone or anything, this time he is still alert but we are told by the drs. his kidneys are now failing........ we have a meeting with hospice this week to discuss him going home until the end............ its me and my 2 sisters doing all of this and plus i am raising a 8 month old baby and its so very hard i also live an hour or so away................ my sisters have no children and do the most they can while still maintaining their jobs and lives......... my dad has a girlfriend of over 20 years but she is totally clueless this man is even dieing and when we ask her questions her answers are ummm i dont know or whats that? etc...... she is truly from a differenet planet...... i am stressed to the max, i cry daily and not sure how  much more i can take..... i am very sad for him, but also angry he did this to himself.......... and now we must discuss him going home and getting on with this...........  i am fighting with my sisters because we are all stressed and dont know any other way to deal with it, my best friend has not been around for me and my mother (dads ex) is just waiting for him to pass in another country where she is from......

please help

Meesh, my heart really goes out to you and your sisters.  I am glad you found us.  Please do ask about a hospice house in or near your city.  That might be the best solution, if there is one nearby.  Otherwise, I know my friend's ex-g.f., who ultimately died of cancer, had hospice nurses who took 12-hour shifts at home, so someone was always with her.  At that point, she was basically "out of it."  A hospice nurse was there when she died at 2 AM.  Hospice is really wonderful, not only for the patient, but also for the family.

Your feelings are quite normal, but I hope you can come to terms with your anger.  Perhaps it will help to acknowledge on a deep level that alcoholism is as much a sickness as diabetes.  Take comfort in the fact that your father finally quit, even though it was too late, and will be dying sober.

Please come back and post and let us know how you and your family are doing.

Hugs,

Hi, Pam!  I recognized you from Chronic Pain.  Thanks for your personal input.  My mother was an alcoholic who drank heavily until she finally went into a NH.  So I can empathize with you.  However, I became an alcoholic, too, though I've now been sober for 22 1/2 years.  There is help and hope for those who want it.  My mother just never did, and many, many don't...which is hard for me to understand.

Hope your pain is manageable today.  This cold weather is kicking my behind!

Meesha,  when my husband went on Hospice they immeadiately put him on liquid Ativan (sp?) and liquid Morphine.  The Ativan helped to relax his body so that the morphine could work.  If your father is not getting enough relief from the morphine, ask about the ativan.  My heart goes out for you.  I believe I cried more in the last year and half than I have in my life.  But you know what it didn't hurt a thing, cry all you want, it's something a person needs to do.  My prayers are with you and your family.

Helen

Connie, I making it.  Doing half way decent, trying to get paperwork done and thinking about what in the world I'm going to do now.  I'm 48 and I have start my life all over again and fortunately for me I have great kids and friends.  A warning to caregivers, time is still passing in the world.  I saw a lady at church and asked her how her new grandbaby was and she told me her 2 year old grandbaby was doing fine.  I could not believe how much time had passed, it goes by and we don't even realize it, because we are living so much of time minute by minute.

Take care

Helen

Dear Hep93,
Your posts are so helpful. Thank you for moderating on this forum and caring. Your words are comforting, especially for someone like myself seeking answers to these questions for the first time. I also appreciate Helen's comments re: the passage of time for the caregiver. Two years have gone by in the blink of an eye. I am 46 ys old and have been living with an alcoholic for the past 20 something years. He is still in denial about his liver disease and refuses to get help. I'm only beginning to realize what I've lost too.

Hep93

I don't think I want to be any stronger.  Its amazing how the illness becomes your life.  I had actually forgot what normal life was like.  Everythng we do eat etc. revolves around this illness.  Fortunately my husband quit drinking the minute the word cirhossis was mentioned.  Thank god.  It has give us two years so far.  My prayerss are with all the caregivers that are going through this nightmare.

JoAhh

Hep93

You are so right.  I feel like such a baby when I complain.  You have been through so much more.  I guess I just needed a reality check.  Thank You

JoAnn

Hi this is the first time I've posted anything, but I've been reading many of the posts for the past 2 months.  My uncle who is 53 was diagnosed with End Stage Liver failure because he was an alcoholic.  He has been homeless for over 6 years, by his choice of the alcohol.  We received a call about 2 months ago that he was in the hospital and we were told his diagnosis.  My family(most of us) have completely changed our lives to help him live out the rest of his life.  Hospice has already started helping with most of his medicines and daily help, but his liver doctor (whose never seen my uncle) has discussed doing the TIPS procedure.  Our family nor hospice can understand why they are wanting to do this, especially with the complications after the procedure with the ammonia levels and the more other things.  The worse part is that he has shown us that he doesn't really care about his life.  We have to treat him like he is a kid, recently my mom found a bottle of her perfume (a twist top) and a pair of her reading glasses hidden in his shoes.  That same day they went to the DR's and he stole the alcohol swamps from the bathroom at the dr's office and tried to hid them from the Dr and my family.  He has never really been right, but now it is worse because he's living at my mom's house.  She can no longer work because he must be supervised at all times, because he can't be trusted.  He has also changed his addiction from the alcohol to smoking.  He smoke an entire pack of cigarettes in less 20 hours.  He treats my mom like his servant and nothing is ever the way his wants it.  At this point we are at our wits end.  Maybe I just needed to vent, but I'm hoping that someone can help give answers to all of this.  This is so hard on our entire family, we can no longer eat as a family or even hold a private conversation without him listening in.  He has red splotches on his face and he's constantly picking and digging.  I know that this is from the toxins in his body, but it is horrible to watch. 

When anyone tries to talk to him about his health or anything serious he'll talk about fishing and things from when he was in his teens(probably the best years of his life).  Hospice and asked about his 5 wishes and 1 is that he wants to go fishing and the other is the be berried.  His health is so bad that fishing is not possible and we can not afford to bury him.  He has never been in the military, nor held a job where he's paid taxes.  I feel like he is treating this as a vacation, and yes I know he's dying, but I do not want to jeopardize the health of my mother because of him.  At this point I'm scared that all of this is taking a toll on my mom and her mental state. 

I guess I'm just needing support and people who understand to talk to.  Sorry to complains about my issues, I just don't know when this will ever end!

-Miranda

Raeanne and Sunny, I just want to welcome you both to the forum.  You are in very difficult situations.  My mother was also a life-long, practicing alcoholic (I'm a sober one for nearly 23 yrs. now.)  I only lived with her for 5 yrs. of my life (my teens), so it was easier to cut off relations with her about 25 yrs. before she died.  Long-term, heavy alcohol use affects the brain ("wet brain") and that is what happened to her.  (Complete senility...wasn't able to give any correct information.)  She ended up in a NH and died of a heart attack in a hospital.

Sunny, from what you have described TIPS really doesn't sound appropriate.  Since Hospice is involved, wouldn't that be beyond what they consider "palliative" for a patient?  Some of the caregivers whose loved ones have had the procedure may be able to answer that one...or Hospice, itself.  Given the hepatologist has never met the patient(!!), he is giving a recommendation based on whatever he's been told or records he's seen.  Unless it's a true life and death moment, IMO that's poor medical practice.  Any reason the doctor hasn't met the patient?

If the care becomes too much for your families (and it seems it already is), what are the alternatives?  In my city, there are 3 Hospice inpatient residences.  (Hospice never turns anyone away for inability to pay.)  Sunny, since Hospice is already involved, ask about residential care.  Also, your uncle should qualify for Medicaid and possibly a NH.  Raeanne, you could check that out, also.  Sometimes the best way to get a patient into a NH is via the ER and what is called a "direct admit."  I have heard doctors I worked for suggest this many times.  If true nursing care is not really needed around the clock, some type of custodial care might work.  The cigarette smoking, considering your uncle's mental state, is a real concern because of the risk of him starting a fire.

There is also the Meyer's Act, for alcoholics...much like the Baker Act, when a person is a danger to himself or others.  In FL, the name has been changed (which escapes me right now) to include drug users.  The court orders appropriate placement.

I just wanted you both to know that there are alternatives.  One thing I've learned in life is not to have "tunnel vision."  In any given situation, there are always options.  And it never hurts to check out options, even if it's decided not to use them.  These decisions are difficult to make, but as many caregivers of Alzheimer's patients can attest, it usually is just too much for them to handle at home.  Given the mental status of these men, it sounds like a similar situation...especially in your case, Sunny.

If you just want to vent, that's fine, too.  We all need to do that as a coping mechanism, and this is the perfect place as there are others here who can empathize and support you.

I ordinarily would suggest you start a new topic, but since I've given such a long reply, that doesn't seem appropriate. 

However, if you know how to "copy and paste" your posts into a new topic, that would assure that everyone sees them.

Again, welcome.

Connie

Sunny, "liver specialist" is known as a hepatologist. 

I hope that your uncle has no complications from the procedure and has a good recovery.

My thoughts and prayers will be with your family.  Please keep us updated.

Hugs,

Connie