About Me

My photo

Providing non-judgmental and non-criticizing support for family and friends of end-stage alcoholics through one-on-one coaching, support groups, blog posts, workshops and public speaking.

Saturday, March 26, 2011

Information please...

I received an e-mail from a reader whose mother is as an end-stage alcoholic. She mentioned several times that the medical personnel were not forthcoming with information. This post is dedicated to her, and her father, who are trying to make sense of the insanity.

On average doctors receive only 30 hours of instruction on alcoholism. Alcoholics don’t usually like going to the doctor because they know they will be told to stop drinking. That means uneducated doctors are not getting much real world experience when it comes to the end-stage. They are well versed in the affects of alcohol on the body’s organs. They know biology. Please see my page, “The Medical Dilemma.”

Let’s not discount the fact that doctors are humans. We often place them on a pedestal, but in fact they are just more educated in the field of biology than us. They are experts in things of which we have little, if any, knowledge. Now that I’ve said that, I want to stress that a good doctor will tell you everything they know. They won’t mince words. They will tell you just exactly as it is. A good doctor will tell the alcoholic he/she is dying. A good doctor will say it over and over again. Trying to find such a doctor is hard work. It’s like fishing for a shark in Lake Tahoe.

There are doctors who specialize in addiction, but most often they are addiction psychiatrists. These are medical doctors, but the focus of their practice is in the psychology rather than physiology. A Hepatologist is a doctor who specializes in the liver as an organ, but finding one can be an issue. A Gastroenterologist specializes in the digestive system. The Internist is highly trained in the internal workings of the body including hepatology and gastroenterology.  A Family Care Physician treats the patient and the entire family. By that criterion, the best doctor would be an Internist who is also a Family Care Physician.

Do a little fact-finding before you make an appointment. Call the potential doctor’s office and ask what the approximate percentage is of patients that the doctor treats who are dealing with alcoholism or liver ailments. Ask if the doctor has any special training in either of those areas. Get referrals from other caretakers of alcoholics – ask at an Alanon meeting. Call a local rehab center and ask for a referral or suggestion. If you have your own family physician – ask him/her for a referral for the alcoholic. 

Finding a doctor is only part of the requirement. The family has to do their own due diligence. The family must consult with Dr. Google and understand the terms you may encounter. It is unfortunate that the family must do this, but it is a fact of the life of a non-alcoholic in the world of alcoholism. But, be advised, you won’t find much information on “end-stage” alcoholism. However, you can find information about certain terms or conditions. I’ve listed here some things to Google: Cirrhosis, Hepatitis, Delirium Tremens, Hepatic Encephalopathy, Esophageal Varices, Wernicke-Korsakoff Syndrome, and Alcoholic Cardiomyopathy. Please see “Alcohol and Biology.”

The best way to deal with doctors is to be educated. If you present yourself to the medical community as an informed, intelligent person, they will respond in a more informed, intelligent manner – most of the time. Instead of asking what you can do to keep the alcoholic alive, ask instead about the liver enzyme level or the ammonia level.  The only real way to keep an alcoholic alive is to instill in them a desire not to drink. In the case of an end-stage, reducing the desire to drink is not likely.

Blood tests contain vital knowledge for the caretaker of an alcoholic. The right blood test can give the information needed to determine an approximation of the chance for survival. Or… in other words… how long to expect an alcoholic to live in the present state of drunkenness.  There are two tests for making that determination – Child-Pugh Score and MELD Score. These scores are used in the calculation to determine the survival rate for someone on the liver transplant list. But, I want to be clear that most alcoholics do NOT qualify for liver transplant.

One of the best places to find information on either of the two scoring systems is in Wikipedia. They provide a good explanation of the test and how to rate all the different factors. You can also Google for Child-Pugh Score Calculator or MELD Score Calculator. See which site works best for you.

The liver is only a tip of the ice berg waiting for the Titanic. End-stage alcoholics have brain damage due to the lack of blood flow. Also to be considered is the pancreas, immune system, kidneys and heart. Alcohol in excess is poison. Poison does not do nice things to the body.

When you meet with a doctor you must have your facts in order. Keep a journal of the alcoholic’s progression of deterioration. Get and keep copies of the lab reports. Show how you reached your score’s determination. Write down everything – how often the alcoholic falls; how many nosebleeds a day; amount of alcohol consumption; what type of alcohol; and last date of sobriety. Present to the doctor a timeline. Doctors love facts and figures. So give it to them.

The caretaker of an end-stage alcoholic is really no different from that of an end-stage cancer patient. However, you will be hard pressed to find a doctor who is willing to provide hospice for the end-stage alcoholic. If the caretaker feels the alcoholic is near death, ask for hospice support or other outside help. If you don’t ask, you may never receive. And if you don’t receive help from someone, anyone, the doctor may end up with two patients – the caretaker and the alcoholic.

It is a thankless path on which the caretaker walks. Finding the right doctor and knowing the facts will lower the incline of the pathway. Be warned, the walk will never ever be a stroll and will often feel like a run up Pike’s Peak. Keep your pace as close to a walk as possible and don’t forget to stop and smell the flowers along the way. But, before sticking your nose into those petals, check for bees.

12 comments:

Jennifer said...

This is my first time visiting your blog. It made me cry -- it's a relief to hear from someone else who knows what I go through better than I do and can put it in perspective. I'm in year 22 as a non-alcoholic wife of an alcoholic. In just the past few weeks, I've tried to convince him to have his liver checked, thinking "if only he'd go to a doctor, we'd know what we were dealing with (how much organ damage)... someone besides me could tell him it's the drinking causing his increasingly vivid delirium... perhaps they'd hospitalize him long enough for his organs to heal back to where they were 10 years ago when his body could tolerate/absorb the toxins." He has no tolerance anymore. A liter of rum every day. This blog brings me back to reality -- going to the doctor will be like every other hope I've had that this might end. There is no miracle.

Alcoholic Daze (ADDY) said...

I have been along that path where doctors have little real knowledge of alcoholism and the end stages in particular. I agree that more needs to be done to educate doctors, particularly as here in the UK alcohol addiction is becoming more common than ever before. I applaud you for a well-presented blog site and with much advice for those facing this problem.

Ann said...

Great blog! Very informative. I don't like that any of us are going through what we are, alcoholics AND caretakers alike......

Cadan Henry said...

waiting to hear how my friend's father will end up. also end stage. what she goes through taking care of him is hard to imagine.

Paul said...

My brother died a few weeks ago. They found him last Monday...life has been hell for a lot of us the past 10 years....so sad for such a gifted man.

Anonymous said...

Thank you for all that information. I was just at the hospital with my end-stage brother and didn't know how to talk numbers to the doctor. Finally she agreed that he probably has brain damage and will need life long care, but now I can see the blood test numbers in a different way. He keeps getting kicked out of treatment as a poor risk and I need to know what we are up against.

Linda said...

Paul -- I'm very sorry about your brother. I hope your road to recovery as short as possible.

Linda said...

For all my readers with active end-stage alcoholics -- I'm developing a workbook that can be used to journal the progression of the alcoholism. Hopefully, it will provide useful information you can present to the doctor to help him determine where the alcoholic is healthwise.

Anonymous said...

Thank you so much for taking the time to make this blog. It is a huge comfort to me.

Florida Drug Rehab said...

If you are looking for a really good florida drug rehab, you
will love A Road to Recovery Rehab.
The best florida drug rehab you could go to is A Road to Recovery Rehab.
At your local florida drug rehab, you will not find the quality of service that you would get at A Road to Recovery Rehab.

Linda said...

To Florida Drug Rehab -- I do not advertise on my blog because I want to keep the focus on the families of the alcoholics. If you wish to be listed on my Rehab Review page, please contact me via e-mail. If you have a strong program for the family, I will include you on that page. Thank you.

Syd said...

I don't know how I would deal with an end stage alcoholic. I hope that I would have compassion. You provide a chilling assessment of how far down alcohol can take a person.