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.

Abnormal lives here...

When I was growing up I thought my family was normal. If some other family was different – they were NOT normal. Normal was what I was trained from childhood to believe everyone else should be. My parents didn’t set out to make me believe that – I think it just happens in every family. If I had grown up with alcoholic parents I would have thought it was normal until I got closer to my teens and could figure out that it wasn’t.

The first time I realized that other family dynamics could be extremely different from mine was at about 12 years old. I had a friend, Crissy Q, whose mother was different. There was a formal living room in her house, but Crissy and her sister were never allowed to go in there except for dusting and vacuuming. I had been in and out of that house many times in the space of nine years and we never went into that room. I saw into it from the doorway, but that was all. I thought that was odd because at my house we used every inch of every room. The only rule we had was that we knocked before entering a bedroom with a closed door.

Mrs. Q always wore lots of makeup. It seems she always had thick layers of lipstick that wasn’t reserved just for her lips. Her cheeks were smudges of red giving her the look of a china doll. My mom only wore makeup when she was going out and even then it was applied sparingly. “Less is more,” Mom would say.

The other thing about Mrs. Q was that she took naps – a lot of naps. And we were not allowed to go in any room in the house except the den which could be entered from the back yard when she was taking one of her many naps. Once inside the house, we always whispered.

I had started visiting Crissy when I was nine and I just thought those were the rules of the house. OK. Every family had rules. So this was just their rules. It wasn’t until three years later that I realized why the rules were in place.

We were going to the drive-in movies. Mr. and Mrs. Q, Crissy’s sister (Cathy), Crissy and I all piled into the beautiful T-Bird that, like their living room, was seldom used. It was a beautiful car. The three of us girls were in the back seat, with Crissy directly behind her mother. When Mrs. Q pulled out a flask and took a few sips, I notice a look between Crissy and Cathy. Crissy hit the back of the seat with her foot. Her mother protested. Crissy did it again and told her mother to give her the flask. Her mother refused. Crissy hit the seat again. Her mother was now visibly angry and started spewing profanity. I had never heard such vile things from a woman before. Crissy kept hitting the seat and insisting that the flask be given to her. Mrs. Q turned around in her seat and started trying to hit Crissy.  I could not believe what happened next. Crissy pushed on the seat with both of her feet and it folded over encasing her mother. That’s the way it stayed until we arrived at the theater.

During the trip, Mr. Q just kept driving. He didn’t say anything. He didn’t do anything. He just kept driving. Cathy looked out the side window and seemed intent on the passing scenery. She also said nothing. It was as though, I was the only one witnessing the interchange between Crissy and her mother. It felt surreal. I didn’t know what to do – so I, like the Cathy and Mr. Q, did nothing. But, I was horrified, frightened and just wanted the night to end.

I was very happy to return home that evening. I had not felt safe the entire time I was out with Crissy’s family. When I walked into my own house, I could feel the love and security all around me. Every pre-teen has issues with their parents, but that night I felt that mine were as close to perfect as you could get. My parents were normal, Crissy’s parents were not.

I visited Crissy’s house many times after that. But, I never went anywhere with her family again. I never stayed for dinner. We spent most of our time in the pool or on the patio. I tried very hard to never interact with her parents.

As I grew older, I realized that Crissy’s mother was an alcoholic. I didn’t know much about it because I grew up in a non-alcoholic household. I never really thought much about alcohol or alcoholics until I realized that I was married to one. After I reached the realization, I found myself using Crissy as a measuring stick on my own children. I would think – they aren’t as angry as Crissy was so everything must be OK. Things weren’t really as bad as they were for Crissy and Cathy.

In reality – it’s all bad. Children do not belong in an alcoholic household. It is not safe and they can’t possibly understand all the insanity around them. Children’s idea of normalcy is created by the environment and sanity of those around them at an early age. If as a child you perceive folding your mother in a car’s seat to be normal – unless there’s lots of therapy involved – the adult version of the child will believe that to be normal. I don’t really believe any sane adult would think it OK to do such a thing. Folding a car seat while occupied with a human is a bit extreme. I don’t think most of us make a conscious decision to do things that are clearly abnormal. But the subliminal idea may be there. It may creep into the mind of someone under stress at unlikely times.

It’s a lot like children who grow up in physically abusive households. The child grows up and repeats the cycle. The abuser knows it’s wrong. But, it is almost as though the abuser is driven to repeat what they may have known as “normal” during the very early developmental years. It’s hard to determine what a child will carry over into their adult thinking. I know that I remember the Mrs Q incident very clearly. If I had seen that over and over again, I might have come to believe it as being a normal thing to do.

I’ve never strapped Riley into a folding seat of any kind. But don’t believe for a single moment that I haven’t thought about it. And that may be a huge neon sign pointing directly at me that says “Abnormal Lives Here.”

Reference and shocking images...

The website that gave me the "four year" statistic was www.alcohol-drug.com/neuropsych.htm. For clarification, blood flow starts increasing immediately after the drinking ceases, but it takes approximately four years to regain FULL blood flow activity. With out the correct supply of blood to the brain, the brain cannot function properly. It's frustrating for the non-alcoholic, but probably even more frustrating for the alcoholic.

I also found a site that has some shocking scan images of the brain after excessive use of cofee, nicotine, alcohol, and marijuana versus a normal brain. It has made me think seriously about cutting back on my coffee consumption. My average is 3 cups a day -- maybe I should keep it to only one. The link is http://www.dailymail.co.uk/health/article-1177258/Are-wrecking-brain-Chilling-pictures-reveal-shocking-effects-alcohol-cigarettes-caffeine-mind.html

Sobriety does not equal sanity...

It all seems so simple. The drunk reaches sobriety and the sun shines all over the world. Happy days will surely follow and life will return to logicality. But wait… I just looked it up in my New Merriam-Webster and the synonym for sobriety is NOT sanity. That is so disappointing. Just when you thought…

Being sober simply means that the alcoholic is not drunk. It means the absence of alcohol. It also means serious or grave in mood, having a quiet tone or color. Synonyms include solemn, staid, and sedate. Well I don’t know about all of that. What I do know is that for Riley being sober simply means that he is not drunk.

It is a fact. Alcohol causes the brain to shrink. The frontal lobe is the most vulnerable. It contains the control center for things such as emotions, motor functions, problem solving, spontaneity, memory, language, initiation, judgment, impulse control, social and sexual behavior.  Unfortunately, that’s where alcoholic liquid likes to go.

It takes approximately four years for an alcoholic who has attained sobriety to recover most, some, or any, of the frontal lobe function. And there is no guarantee. Each alcoholic is different just as each human is different. The longer the period of drinking, the longer it will take to recover. Four years is a long time to wait for sanity when it seems it should be right there within grasp.

The most visible example of that is in the highly vocal rantings of Charlie Sheen. He seems to have lost the ability to use good judgment and has very little impulse control. If you review the paragraph about what the frontal lobe controls you can see how most of those functions appear to be out of control for Charlie. He claims sobriety, but I don’t see much sanity.

Don’t get me wrong. I love Charlie Sheen. I love the whole fam damily – Martin, Emilio and Charlie. What’s not to love about such a group of talented beings? When I heard Charlie say he had achieved sobriety without the aid of AA or any other support system – I was delighted. I thought – yeah – there are other options. I wish he had just shut up after that announcement because it quickly turned into the exposure of a man who was not in touch with reality. And how could he be? It takes four years…

In Riley’s case, the ability to make rational judgments and follow in a train of conversation is sometimes… well… difficult. He doesn’t remember many things from day to day. Most of the time I can keep up with remembering what he has a tendency to forget. Other times… not so much.

I think what bothers me the most is the irrational logic when he is trying to make a point in a conversation. For example, his comments about Charlie are centered in the fact that Charlie can have two girl friends live with him in the same house. That elevates Charlie’s status for him. And that seems to be the only real thing that Riley is grasping. When I tried to make the point that Charlie was portraying himself as irrational -- he just relates something about some “young blonde bimbo with big tits who can claim to be sober for 3 days”. Riley also claims that Charlie is somehow profiting financially from all this bad publicity. I don’t get it and I certainly wouldn’t want to be part of it – whatever IT is. I try not to ask Riley his opinion any more. What’s the point? I almost never understand it.

We had to make a decision this week about taking a trip to New England for the decommissioning of one of the submarines on which Riley served. I loved New England when we lived there. Alea and I were ready to jump at the chance to spend a few days in our old stomping grounds and enjoy some fantastic lobster dishes. The decommissioning ceremony just created an excuse for the trip. After I took a look at the budget and saw how many vacation days I would have to take – I became a little less enthusiastic. That didn’t mean that Riley couldn’t go.

I presented the option to him – take the train to New London and cabs for transportation. He (We) wouldn’t have to worry about how drunk he was because he wouldn’t be driving. He could leave on Thursday and come home on Saturday. It was far less expensive for just one person without a car rental. I needed to return the RSVP card and pressed him for an answer. He couldn’t give me one. He kept asking me if I was “comfortable” with that. That’s when I realized that he was the one who was not comfortable. I believe he was a bit afraid to be on his own so far from home without a safety net. He wasn’t able to make the decision.

The three of us, Riley, Alea and I, will leave on a Thursday and travel to New London via Amtrak. The decision and plans have been made. He no longer has to think about it.

It’s all a part of the brain damage – the inability to make a decision, the fear that he may not remember how to travel on the train. This was once a man who could tell you the routes and timing of every train on Amtrak’s line. He loved to travel and especially enjoyed travelling alone because it allowed him the possibility of a chance meeting with a female stranger for a meaningless encounter. There goes the sexual impulse control – it’s just not there!

There is no immediate sanity in sobriety. What sobriety does provide is a better likelihood of a chance for rational thought. The situation is better when the alcoholic quits drinking. But we non-alcoholics must remember that there is brain damage. The four years following the alcohol consumption can often have us going --- Huh???

An indispensable tool...

I want to thank all of you for your comments and e-mails. I want to assure you that I’m fine. I took some time off work to do event and foundation stuff and feel a little better now. I plan to take a weekend soon and go off into the mountains to recharge in the midst of solitude and nature – without Riley.

My BFF, Carrot, called the other day and wanted to know where my next post was. She was jonesing for what I had to say. I told her she didn’t have to wait for a post because I was always here for her. But she says it’s not the same and wants more. OK, Carrot, you asked for it.

It is a vital survival tool to have a friend like Carrot. I call her often and tell her everything. All my dirty little secrets reside in her heart because that’s the only really safe place there is to put them. She knows me better than I know myself. I wish I knew her as well as she knows me, but there are parts of her past that she chooses not to share. And that’s perfectly OK. She has had an interesting life and has been involved in substance abuse. There are dark places that she does not share. I probably know more than most – but I don’t know all. But none of that matters because I love her just the way she is no matter what she has done or where she has been. My love for her and my friendship with her is not conditional.

We met in high school. We were the first girls ever to take the mechanical drawing class and we were instant kindred spirits. We were 16 and full of mischief. After hanging together for a year, she met my older brother. I was not happy about that. And when they married – the only happiness I could find was in the fact that my best friend was now my sister.

We both had children – four for her and two for me. The six kids were separated by no more than a year apart. We often switched kids around – I would take the girls and she would take the boys or vice versa. The pediatrician never knew which mother would bring which kid to an appointment. We were dubbed “Interchangeable Mothers.”

This woman senses from 3,000 miles away that I need to talk to her. There have been times when I’ve ranted on for an hour and she has never said a word. When she does say something it is usually a reminder for me to breathe. I sometimes feel guilty that I dominate the conversation. But, that’s the way our relationship has always been – she’s always been the listener. I’ve always been the talker. Somehow it works.

Anyone who is a non-alcoholic surrounded in the muck of alcoholism, needs a friend like Carrot. If you are in that situation and don’t have one – get one. Get one now! You may have to cultivate one, seek one out. If you look around and keep looking for the signs, you will find one.

I have a few tips on finding a best friend.

It should be someone of the same gender. Men and women are different. It’s not that they can’t be friends – of course they can – but the life view is different and often one is not able to see the other’s point of view. I have a male friend and sometimes I look at him and say – “Are you kidding me? Is that how you really feel?” I could never tell him that sometimes the way Riley scratches his balls makes me sick because he doesn’t wash his hands afterward. He would think that to be perfectly normal and not understand why I hate it. He might even question that I said it – that would be worse. I have enough guilt on my own.

If you attend Alanon meetings you already have a wealth of possible best friends. They share and understand many of the same things that are happening in your life. Sharing with these people is easy.

Who’s that in the same section as you in the bookstore? Could it be a potential friend? If they are in the same section, you must share something in common. And if it’s in the section containing books on alcoholism – it’s even better.

Or maybe the parent of one of your children’s friends – that would be convenient. The kids might not like it so much – but who cares what they think? The only reason they would not want you to be friends is because you become a united front against their shenanigans.

What about the fabric store? A farmer’s market? A cooking class? Find something and participate.

No matter where you find your friend, you must determine if the friend is truly friendship material. You should click. It’s almost like falling in love. There has to be chemistry of truly “liking” the potential friend. And the only way to find a friend is to be open to the possibility. Take the cotton out of your mouth and speak up – say hello – introduce yourself – invite someone to have coffee. No one will enter your life if the door is locked.

We non-alcoholics live in a world that we prefer to keep private. We often alienate ourselves because to admit our life is not perfect is somehow an indication of our failure. We don’t get out often enough. We become so enmeshed in caring for the alcoholic that the things we had a passion for in the past are now a faint memory. We lose ourselves in the insanity.

Having a friend can help us remember the interests we once had.  They can help us live in the real world. A friend gives us someone with whom to go to movies, shopping, on a cruise, on a game show, or almost anything else that you’ve ever wanted to do. Most of all a true friend will not place blame or generate guilt. And a true friend will listen.

I wish all my readers could have a friend like Carrot.

I'm tired...

It appears that having a “cooking” event in this area in the fall is not advisable. Evidently there is a flying critter issue – gnats – which would make it difficult to BBQ outside. We moved here last Sept and I noticed that we had a gnat problem, but I thought it was because we are surrounded by farmland. That’s not the case. I’ve been told that even downtown turns into Gnatville in the fall.

I have a reputation for thinking outside the box – I do “work arounds” for life’s complications. So, with the help of one of my readers, I have come up with an alternative. The event will be a Road-Kill Crock Pot Roundup. The ingredients are cooked in the contestants’ kitchen and then combined into a crock pot at the event. It can be anything – stew, chili, soup, bbq… as long as it gets cooked in the crock pot. I’m trying to work on a tag line like – The Road to Recovery’s Road Kill In A Crock” or something like that. Definitely open to suggestions on that one.

Funding is an issue as I do not have non-profit status. I’m attempting to set up the Brian Riley Foundation designed to provide support, education and resources for the families of end-stage alcoholics. This foundation would provide funding for events such as Road Kill as well as a website and referrals. It would host educational events and classes.

I’m also busy writing query letters and applying for writing jobs. And let me not forget about my real 9-5 job. So, it’s been fortunate that I’ve been able to delegate some of the errand running to Riley.

Well… I suppose it was fortunate.  As we all know… it was a slippery slope. I knew the risks and my disappointment was not unfounded. With each errand, Riley made a trip to the liquor store. And each errand resulted in an episode of drunkenness which in turn results in my not being able to send him to run errands.

The problem is complicated with the fact that I’m tired. I’m exhausted from being the policeman and explaining to Alea why he was able to get the booze. I want to just go buy him about ten of the “handle” size bottles of vodka and let him guzzle it down. Let him go into a stupor for a while. Let whatever happens happen.

The problem won’t be in the drinking… it will be when the booze flow ends and there is nothing left in the house for him to drink. That inevitability just leads me to another problem which would be -- what do I do next? Do I rush him to the emergency room as he goes into DT’s? Do I rush to the liquor store and buy him more? It’s a moral dilemma that I hate. I don’t think anyone should play God and sometimes I feel that I’m forced into making decisions that only God should make.

I’m tired. I don’t want to stop what my blog has started – the event planning, foundation building, answering the e-mails, posting on Facebook.  On the other hand, I’m tired. I need a break. It’s becoming harder and harder to remember why I started this.