It won't kill you...

First of all, I want to thank all my readers for their patience while I have been away from the blog. I appreciate the many letters I have received expressing concern for my lack of posting. I want to assure you that I’m OK. It’s just been a little more difficult lately and my usual time for writing has been overtaken by other responsibilities.

After Riley returned home from the hospital, he never quite returned to where he was before he went in for stabilizing. He is weaker now than ever. He has absolutely no bowel or bladder control and cannot walk without assistance. On Thursday he fell eleven times. One of those falls was only about an inch from the fireplace.

I met with Gill and we talked about having Riley committed to the state mental hospital. My fear was that he would detox and come home so we could start up this routine all over again. It pains me to say that I really don’t want to go through all this insanity ever again. I’ve done it so many times and each time my physical health deteriorates and he just goes on. If the hospital would keep him, I’d be all ready to have him committed.

The reality is detox is dangerous. I know that and I know that Riley may not survive detox this time. But, too many times I’ve been told he that he would not survive and then he becomes immortal. When Riley is alcohol-free after detox, he actually presents himself as a sane and rational individual. I don’t believe it’s sane for anyone to return to drinking after detox, but my opinion means nothing.

Because I thought it might be possible that they would keep him, I did some checking to lay the ground work for Riley’s being committed. I spoke to the Magistrate. I learned that going before the Magistrate only initiates an order to have a Sherriff’s squad car to come to my home, handcuff Riley, put him in the back of the car and transports him the almost 3 hour drive to the hospital. Well -- that doesn't sound like something I would want to have happen to him. It just seemed like overkill to me.

Once there, he would be evaluated by a hospital doctor. That doctor would make a recommendation as to treatment. It may be that he will simply be detoxed and let go. If he presents himself after detox to be a danger to himself and others, then and only then, they would admit him in a residential program. Well – for me – that sounds like a crap shoot! I’m not much of a gambler and I think maybe I should just pick up my cards and go home.

I took my information and met with Gill once again. We agreed that for Riley to state he intended to drink again was an act of insanity. He is a danger to others by virtue of admitting he would drive drunk. He is a danger to me because of his inability to clean up his biological waste from the floor and walls. He is a danger to himself because he knows the drinking will kill him. But, generally speaking, they don’t commit people for that – or at least – I don’t think they do.

When Riley was discharged from the ICU, I was told to take him back to the doctor’s office on Monday to get his lab work re-done. There is no way that can happen because I can’t get him into the van and once in, I don’t know if I could get him out. I called the doctor’s office to let them know that I wouldn’t be bring him in. I was told not to worry about it, that the doctor would be calling me.

I rarely have much sympathy for the medical community. I find their lack of knowledge and understanding to be a constant irritation. When the doctor called me back I knew I would get the lecture about getting him detoxed and into rehab. I was surprised when the doc simply said that there was really nothing more he could do for Riley. He understood that Riley was not going to stop drinking even if they got him to agree to rehab. There was nothing medically that could be done for him. He couldn’t even give him anything for the pain from his arm or any past or future injury because there was just too much alcohol in his system. When I told him that I didn’t know how much longer I could take care of him, he said he would be ordering hospice. I told him I was reading between the lines. He acknowledged that I understood what that meant since he knew of all the work I have done in writing this blog. Because he knew that I was informed, he didn’t try to give me anything but the facts. I was so appreciative of that.

The events over the past week had made me a bit unsure of a few things and I asked him some questions.

Q:        Riley’s ammonia level is increasing at the rate of about 250-300 micrograms per month. What can I expect as the ammonia level increases?

A:        There will be increased confusion and agitation. He will lose all control of his bodily functions. He will be falling more because he’ll become unable to balance himself. He will sleep almost continuously and will fall asleep any place and at any time. Eventually, he will most likely fall into a coma from which he will not recover. However, it will NOT kill him.

Q:        If the ammonia (hepatic encephalopathy) doesn’t kill him, what will?

A:        The elevated ammonia level is caused by his liver failing to function properly and that WILL kill him. But, that is if nothing else is going wrong inside his body, which clearly there are lots of things going wrong.

He has a history of esophageal bleeding, so he may have esophageal varices which are almost instant death.

His potassium level is extremely low makes him susceptible for a heart attack and since his system is so weak, he would most likely not survive.

He has a lesion in his brain which was the cause of his last stroke. His blood is thinner from the alcohol and any bump to his head could cause that lesion to bleed. That can either cause another stroke or kill him. Because of Riley’s history of falling, he believes this is the most likely thing to happen.

I found it refreshing to get straight forward answers from a medical pro. I know I knew all of this, but to have validation that I am correct is great to hear. But it wasn’t really great because, until now, my knowledge was all about my research and experience. Now I have to look at reality and make some decisions or changes. I’m just not sure how to do it or what changes to make.

Today the hospice worker will come out and evaluate Riley’s condition and what they can do to help me take care of him. I’m also having the POA’s updated, so a Notary Public will be here. It’s Friday, so the housekeeper will be also here. It’s going to be a busy day – again.

At the moment, Riley is asleep sitting up on the love seat in the den. It has been peaceful in my office and I’m grateful for having the quiet so that I could write this post.

No detox zone...

When I took Riley to the doc for his arm they did blood work. I got the results on Wednesday morning when I was called and told that I MUST get him to the hospital immediately. His ammonia level was over 700 when it should be in the 100s. Also his LFT (liver function) was extremely bad as well as his potassium level. Erica is our PA and I told her that it was not my decision to make. I let her talk to Riley and he refused to go. She told him that I had agreed to take him, if he consented to go but that if he didn’t go, she would have to call the rescue squad and get him to the hospital. He agreed to go, but made it clear he did not want to detox.

But, while I was getting dressed he called her back and told her he did not want to go. Since she didn't pick up, he got in the van and went with me to the hospital.

At the hospital, as Riley went longer and longer without a drink, he became more and more agitated. I refused to intervene. I gave information when I was asked and corrected him on details that he didn't remember clearly. But, when it came to whether or not he would stay -- I shut up. Eventually, he agreed to being admitted and was placed in ICU.

He was now into more than 6 hours of withdrawal. I started my mental countdown - only about 30 more hours and he would be in full blown DTs. He was told they would only keep him overnight, but that they were prepared for the possibility of seizures since he had all the appropriate padding around his bed.  Their goal for him was to elevate his potassium and get him more stabilized.

The ICU doc came in and told us that the lab results she had used were based on a different and using her method, Riley’s ammonia levels were really not that bad. So she wasn’t that concerned. When she started asking Riley questions, the same inaccurate garbage was spewed as it had been in the ER. I started to give her the facts, but was abruptly stopped and told she wanted to hear it from Riley. Well… OK… I let it go and sat quietly marveling at how much misinformation was being bantered about.

While this whole process was going on, I was continually thinking – So now what??? Will this trip to the ER mean another year of hell with Riley? I have vowed not to pull him back from the brink of death, but when  a medical professional gets involved and makes the decision for me or for Riley – I see no way of being able to stop what could easily turn into a snowball rolling down a mountain in the Alps. I can see in my mind and follow the progression. They just want to give him some potassium; then he has a seizure and they have to keep him because he is too weak to be discharged; next thing ya know he’s in full blown detox and that silly little snowball is now an avalanche. And I feel helpless to stop it.

I was invited to spend the night in Riley’s room. They would bring in a cot and make accommodations for me. Sure, like that was going to happen. I had a Riley-free night and intended to make the most of it. I went home and cooked some of my favorite foods, curled up on the sofa with a soft blanky and watched Survivor. Then I took a long hot bubble bath followed by climbing into bed with fresh sheets. Jax joined me on one side and I allowed Jade to sleep in my room next to my bed.
That’s where we all snored the night away until almost 6 a.m.

The doctor made her rounds between 8 and 9 a.m. I had called Gill and he was going to try to meet me at the hospital to talk to the doctor. I really didn’t know what I would be walking into this morning, but I didn’t really expect to see that much of a change from the night before.

Riley was sitting up eating his breakfast complaining that what he needed and wanted was a drink. His night had been OK because they had given him Librium. He was shaky and weak. When the nurse came in and told him to push himself up high in the bed, he could not do it. His general appearance was one of a weak old man, even more so than when I brought him in.

The ER doc said Riley’s lab work looked much better and he would be released that day. I was impressed that they had actually been able to accomplish their goal without him going into DTs. In my mind, I’m still questioning the point in all of it. Why did we really go through this?

I went to get a cup of coffee and when I returned to the room, Riley was sitting up in the recliner. The nurse told me to get him dressed. Oh. Really. Was it really my job? I pulled out the sweat suit I brought with me and started the task of getting him into it. First there was the issue of the Depends – which he did not want to wear. I informed him it was not his choice to make – Depends or stay in the hospital. Once he conceded, trying to get the Depends actually on his body was still another issue. I told Riley to lift his butt so I could slip them on. He couldn’t lift himself high enough for me to slip them on. When they were half-way on, I moved on to the sweat pants and it was the same thing. I thought if I got them partially on, I’d have him stand up and pull them up the rest of the way. The sweat shirt was no problem as were the socks and slippers. I told him to stand up and I’d finish his pants – but he couldn’t stand up at all. He couldn’t walk. He couldn’t do anything but sit. At least when we came into the hospital, he was able to move under his own steam. He was worse now that he was before!

The problem-solving part of my personality kicked in. I could drive up the ER entrance and the nurses could get Riley into the van. But what was I supposed to do after that?? I couldn’t carry him into the house. He couldn’t walk. I expressed my concerns to the nurse. She told me to call a neighbor for help or a family member. WHAT?? The only neighbor I have is at work. My kids are about two hours away and at work. To me the suggestion was ludicrous. I asked if they thought I should call the rescue squad to help me get him inside. After a lot of mucking about, it was decided he would be transported home via the rescue squad. That sounded like a good plan to me.

While waiting for the rescue squad, the hospital case manager came in and told me she would be having a home health agency contact me so that I would have some assistance in caring for him. They knew Riley’s aversion to bathing and knew I needed help at that area – at least. I was extremely happy to hear it. I was also told that I might be able to get assistance from the Veterans Administration since Riley was considered a Viet Nam vet, there may be programs open to him that we didn’t know about until now. Wow! More useful information – this hospital overnight was turning out to be a pretty good deal.

I got home, fixed Riley a drink and within a few hours he was trying to make his way around the house. The more drinks he had, the more mobile he became. So, the drunker he was, the more stable he was. The irony in that amazes me.

Tomorrow I am to take Riley back to the docs office so they can repeat the blood work and see how much he has improved. OK. I can do that. I will comply.

I checked back in my records and when Riley was admitted to detox in SoCal, his ammonia level was almost 900. So while a level of 700 is alarming, Riley has survived much more startling lab results. I suppose to someone who is new to the Immortal Alcoholic, he seems in dire need of help. I know that’s their only goal – to help. I respect that and understand it. It makes my job more difficult and the medical pros don’t seem to understand my point of view.

I’m not upset over the hospital stay because Riley did NOT go into DT’s. They released them exactly as they said they would. I’m thankful for my 24 hours free of Riley insanity. Gill informs me that I have some other decisions to make and wants to meet with me as soon as things settle down. At this point, I feel I’ve made all the decisions I need to make. But, we’ll see what he has to say.

Invisible segment...

There is a large gaping hole in the world of alcoholism. Most people, who are not alcoholics, do not understand that not every alcoholic is savable. Oh… I can just hear my e-mail box filling up with that statement!

I am certainly not trying to be disrespectful. I personally believe most alcoholics have the ability to achieve and maintain sobriety. I also believe that some alcoholics say they don’t want it when they really do. Their brains are just too saturated at that moment to realize that sobriety is what they want. Once the brain dries out, they see that a better life is available to them.

That being said… there is a large segment of alcoholics that are beyond saving. They are end-stage and it’s called end-stage for a reason. They’ve reached the end. The end of being accepted into treatment centers; the end of the medical community being interested in helping them; the end of the family’s patience for the situation; the end of their overall health being able to sustain the stress of detox; and/or the end of the possibility for a sane and productive life.

These end-stage alcoholics have usually been through detox and rehab more times than you can count with both hands. Each time they have returned to what they covet the most – alcohol. And each time their health deteriorates even more. They eventually reach a point where detoxing is more dangerous than the drinking. This group of people do not want sobriety. Even when in a sober state of mind, they will openly state that they prefer drunkenness over sobriety. This is where they veer off and become invisible to the world.

No one wants to admit that someone – anyone – can’t be helped. We all like living in the fantasy world where every illness is cured, every bump and bruise gets a kiss and is made all better. But this isn’t Fantasyland and not everyone gets cured or gets the message. We don’t cure every case of cancer. Why would addictions be any different? Not every case is curable.

Unfortunately, there is no guidebook for what to do when an alcoholic is not curable. No one knows what to do with an end-stage alcoholic who needs medical treatment that may include a stay in the hospital, but has a high death risk if allowed to go into withdrawal. I’m sure there may be a drug that would help them get through to discharge without putting them into a detoxing state. I don’t know of any, but I’m not a pharmacologist. I do know that the one thing that will prevent withdrawal is more alcohol. Even small amounts may be enough. Yesterday I wrote about a hospital providing alcohol to an end-stage alcoholic.

As Riley sits across from me and says there must be a way to get this woman some help – I’m not sure what he means by HELP. He doesn’t (even in a sober mind) believe that anyone should be forced into detox without their consent. So maybe the help he was referring to was actually met with the doses of vodka.

Twice I have heard of a hospital emergency room providing (or allowing) the patient to have alcohol. I don’t know if it is a good thing or not. In my mind, it is a contradiction between bad and even worse. Doctors do take an oath to “first do no harm.” Maybe taking away the alcohol constitutes MORE harm in certain cases. I understand that. And I also understand that taking away the alcohol may mean probable death in certain cases.

I suppose that each alcoholic that enters an ER should be taken on its own merits instead of putting them all into one savable category. It makes sense to me that each alcoholic should be evaluated and treated in the manner that would most likely aid in the recovery of whatever injury brought them to the ER in the first place. In other words, treat them for the bump on the head, or the broken arm, or the cut hand. But automatically insisting on detox is not always in the best interest of the alcoholic. Of course, it never hurts to ask or even to gently prod. But threats of refusal of service should never been an option.

I have taken Riley to the hospital many times with calamities as a result of his inebriation. Each time the scenario plays out the same. The admitting and triage nurses are gentle and sometimes even playful with Riley. They examine his boo-boo and take his vitals and say a doctor will be with him shortly. Several times during the process he will state that he does not want to detox or go to rehab. The doctor comes in and examines him while asking lots of questions about his drinking.

After the examination, the doctor will take me aside and tell me that I need to get Riley to detox. As if it was totally my decision. The doctor will come across as lecturing me as to what must be done – as though I should have done it long ago. I will then be informed that there are no facilities at the hospital to accommodate the detoxing process. (Well – I know that’s not exactly true – all hospitals have ICU’s and that’s the safest place for a detox to happen. But I don’t say that to the doc.) And then – as though everything is hunky dory – I’m informed that they will try to find a facility for Riley. I smile and nod, because to do anything else – to provide any other information – will certainly fall on deaf ears. A few hours after the lecture, the doctor will reappear and tell me that they were unable to find a center that would accept Riley. The mortality risk and relapse risk was way too high. They treat him for whatever and he is discharged.

It’s disturbing to me that the family is almost always admonished for the condition of the alcoholic. It seems they are just expected to keep the alcoholic from getting to the point of being end-stage. Once the alcoholic is at end-stage the family is forced to make decisions as to what is best not just for the alcoholic, but for the entire family. In my opinion the family is more savable than the end-stage alcoholic and if that means the alcoholic goes back home and continues on the path of self-destruction – well so be it.

Personally, I won’t take the detox road again. If I have anything to say about it, I will do anything I can to keep Riley out of detox and let him finish the task he has set before himself. Riley knows my point of view. Everyone knows my point of view and I’m not winning any popularity contests with my attitude. That’s fine with me. Riley has made a choice. I am simply respecting his choice.

The patient described in my last post was in extremely frail health. She was anemic and so weak she could not stand on her own. She did not know any of the why, where, or even who of the questions that are always asked to determine whether or not the alcoholic is cognizant of the present. The stress of detox would almost certainly end in death. The general consensus seems to be to get the alcoholic to detox and that will be the answer. It isn't always the answer and sometimes shouldn’t even be a question.

Our society needs to stop ignoring the fact that not everyone can fit into the round hole that we have been almost “brainwashed” to believe. Everyone is different. Every alcoholic is different. It’s time to acknowledge that fact.

That's not me...

A couple of weeks ago, Riley fell as he was getting out of the van. It took him some time to get off the pavement and into the house. When he falls, I cannot help him. I am not strong enough to pick him up when he insists upon being dead weight. He will not help lift himself in any manner. So after a couple of hours of lying in the driveway with the three large dogs jumping over him and on him, he managed to regain a vertical stance.

He insisted he was fine and that he had not been injured in anyway. But, after a couple of days I noticed that his arm was swollen. He told me everything was working just fine and that he didn’t need medical attention. I told him I would be happy to take him to get it checked out. He refused.

A couple of night later, I noticed that Riley’s arm looked blue around his hand and wrist. I asked him again if he didn’t want to go the ER. He declined once again and said he that would maybe go to the doctor’s office on Monday if his hand was not better.

When Monday came, of course, he didn’t want to go to the doctors. The swelling looked a little less and the hand wasn’t quite so blue. I didn’t push for him to go.

By Thursday, he was in quite a bit of pain. The swelling had gone down considerably, but he was having difficulty using his fingers. I called the doctor and made an appointment for that afternoon. We wouldn’t really be seeing the doctor, but rather his physician’s assistant, Erica. That was good as far as I was concerned. Erica was far more familiar with Riley’s alcohol abuse.

As soon as Erica had examined Riley’s hand, she ordered an x-ray and told us she was very sure the wrist was broken. She asked Riley if he was going to let her set the wrist and put his arm in a cast. He did not answer.

They have all the equipment in the office and performed the x-rays right then. In a short time, Erica came back and said she was happy to report that she was wrong. Nothing was broken, but Riley had pulled his tendons and was going to be in pain for quite a while. She told him she would love to give him something for the pain, but that she could not because he had too much alcohol in his system. She also advised him not to take any aspirin or over-the-counter pain relievers.

Erica then focused her attention on me and said she would be getting some lab work done that will show us exactly where we stand as far as Riley’s over condition. She knows I keep the workbook and that I chart all the lab work.  Erica directed us to the lab and Riley went in to give his blood.

While Riley was in the lab, Erica told me that it was obvious that Riley had degenerated quickly over the past three months since he had been after his fireplace fall. She knows he won’t detox and she won’t push him into it. She is one of the few medical professionals I have ever met that will concede that Riley is in a downward spiral and we are all helpless to stop it. She said she would make some calls and see if I could get some home health aide in the not too far distant future.

This world needs more Erica’s. We need more medical professionals who will listen to the caretaker and offer assistance. I am fortunate to have her in my corner.

This morning Riley’s arm looks better. That is his ARM looks better. Everything else about him is looking not so good. I believe he’s aged about 10 years in physical appearance.  But, this is to be expected. I am not surprised in the least. I know it will get worse before he is gone.

I have been reading to Riley about one of my followers who is having issues with an end-stage family member who fell and ended up in the ER. The hospital doesn’t have a detox facility and doesn’t want her to detox in their ICU, so they are giving her vodka to keep her from going into DTs as they run tests. The long and short of it is that this elderly alcoholic will be coming home to die because there is nothing else that can be done.

Riley is amazed at the fact that there is nothing that the hospital or family can do for the alcoholic. He shakes his head as says how sad it is. He believes there must be something someone can do to save the woman.

I asked Riley why is it sad for this woman and not for him? He says it’s because he knows what he’s doing to himself. Well… don’t you think she knew what she was doing to herself? His response is that she is not responsive and has no idea where she is so she should be helped so she doesn’t die.

I tell them that eventually he will be like the alcoholic being fed vodka at the emergency room.  There will come a time when he won’t remember anything or know where he is or maybe even WHO he is. I asked if I should try to save him? He says NO. He says he doesn’t want to detox and wants to be left alone.

That’s exactly what this other woman has said she wants as well, I tell him. I see no difference in the two of them. Riley thinks about this for a minute and then he says, “But I’m the Immortal Alcoholic. Nothing will happen because I’m not going to die. I’m not like her at all.” They say ignorance is bliss – whoever THEY are. Sometimes ignorance is simply denial.

Message from Dan...

Today I have a guest poster who is one of my Twitter followers.  In my opinion, this guy knows his stuff. This posting is primarily for all my alcoholic readers who are struggling with recovery. There may be some help for you through Mr. Callahan. This one is for you!

Dan Callahan is bad boy who found his way after many detours down the wrong path of life. He ended up on the right road and eventually earned a Master’s Degree from Fordham University in Social Work. He primarily works with patients struggling with substance abuse. He played a significant role in Hands Across Long Island which is the largest and most prominent consumer run mental health agency in the United States. He is the co-author of a New York State training manual and program for mental health and correction service professionals who work with parolees with “serious and persistent mental illness.” All that was taken from his website http://www.happyrecovery.com/

From Dan:

Inaction breeds doubt and fear.  Action breeds confidence and courage.  If you want to conquer fear, do not sit home and think about it.  Go out and get busy.  --Dale Carnegie

Fear paralyzes the best of us.  When it comes to alcoholism and addiction more often than not neither the addict nor the family members heed the signs that something is awry early on.  Often fear of taking any action paralyzes them into hoping beyond hope that it is going to get better, somehow. 

For the addict it is all they know.  They justify their use, they do all they can to minimize the challenges they face due to their use.  But in the end if they are afflicted with the "creature" they continue to sink deeper into addiction.

For the family, they just want to believe that it is going to get better.  That by some miraculous act of God their loved one is just going to stop!  They are going to get through their phase and get on with their lives. 

Without action nothing changes.  Hoping is not action, praying is a start.  For the addict an evaluation of how far it has gone and seeking an experts advice on a plan of action is necessary.  For the family, an evaluation of the situation and seek expert advice on how to bring the message to their loved one in a way that illicit's positive action. 

Finally, when the steps are apparent take definitive action.  Recovery requires making the decision to recover.  What does recovery entail?  It starts with complete abstinence, followed by change.  We must change how we think if we are going to find joy.  How we think about life, family, friends, alcohol, drugs, and what we really want out of our lives.
 

Recovery is possible for the family and the addict.  But not without decisive action!

*******************

Visit Dan on his website or twitter him as Happy Recovery.

I welcome requests for being a guest poster on my blog. I’m especially looking for stories from other caretakers of end-stage alcoholics, but I have a strong following of alcoholics and need to hear from you as well. I’m not an alcoholic and need to hear what it is like to be on the receiving end of the caretaking. Knowledge and understanding is the key to survival.

Please join me by helping me help others.

Thanks.

Shhhh!! Caretaker sleeping...

It was 4:00 a.m. when I heard it the first time. It woke me up out of some much needed sleep. At first I couldn’t quite make it out. At that time in the morning, I was a little groggy. Then I heard it again --- HORSE POCKEY!!! – and I knew what it was. Riley was watching TV.

There’s no point in staying in bed. I toss on my bathroom and slip into my slippers and make my way to the coffee pot. Riley says “good morning” as I pass by his rocking chair in the den. He then informs me of the status of the animals.

“Jax is in and has been fed. Jade has been in and out and has been fed.” I’m not sure what the significance is of him telling me the whereabouts of Jax and Jade. I don’t worry about where they are or what they are doing. If they want inside, they will let me know. Much to my chagrin, Riley feeds them on demand – as well as the neighbors dogs. I worry that Jax will get fat. I’m not too worried about Jade getting fat because she runs it off as soon as she takes the food in. But, I really can’t afford to be feeding the dogs that don’t belong to us. That’s a different story.

I ignore the status report, get a cup of coffee and settle into my office. Mornings are my most productive time and I like to take advantage of that. But, it takes me a while to really wake up and be able to actually see the computer screen. I’m tired. I could have used at least another hour of sleep.

Sleep… I feel like I sleep all the time, but I never sleep “tight.” My sleep is broken into bits and pieces. I fall asleep while watching TV, which is set to turn off on a timer. But, as soon as the TV is turned off, I wake up, go to the bathroom, and try to fall back into a sound sleep. That just doesn’t happen; I wake up just about every other hour. I’m not totally awake each time. I’m awake just enough to know I should go back to sleep.

I like to watch my soaps in the afternoon. The combined programs are one and a half hours long. The problem is that I always fall asleep before they are over and I end up sleeping for about two hours. That sucks because I’m not a good napper. In fact, no one should be around me when I wake up because I am truly a bitch. It takes me another hour to get back to being human after my nap.

My ideal sleep regimen would be to fall asleep around 11 p.m. and sleep until about 6 a.m. As hard as I try to manipulate my body into that routine, my brain refuses to read the memo. I would rather not nap in the daytime, but just stay awake all day long until 11 p.m. I don’t think I’m being unreasonable and if my brain and body doesn’t start cooperating, well, I don’t know what I’ll do, but I’ll do something. There must be a way I can whip them into submission.

Recently it brought to my attention that my inability to sleep may not be from something internal to my body. It could be that something is waking me up that has nothing to do with my brain. So, I was thinking, Jax is in and out of my room all night. He comes in through the window and wants to be feed around 4 a.m. Maybe he is the culprit. Maybe he jumps up on my bed and disturbs me enough to make me just barely wake up. I doubt it, but it could happen.

The more likely scenario is that Riley is waking me up. He is up and down all night long. He watches TV and fixes himself something to snack on. He talks to his computer which is right across the hall from my room. The TV is the source of loud angry rantings. Even though the television is in the den and I can’t hear the program when I’m in my room, I can clearly hear him screaming at the hosts of Chopped that having a time limit on cooking something is unreasonable.  Riley makes his political point of view known when he says someone campaigning – loud and clear. Sometimes I wonder if he thinks the actors, hosts, politicians or contestants can actually hear him as he sits in his rocking chair in rural North Carolina.

My room. It is my haven from insanity. I retreat there often. I even eat my dinner in there. Wait a minute!! It used to be a place for me to rest and recharge my batteries. In long ago days it was sometimes a romantic place and other times it was hot and steamy. Ahhh… those were the days. But it was never, not ever, where I would eat my dinner! Meals were only eaten in my room if I were too sick to go to the dining room or kitchen. Something has to change here.

If you’ve been reading my blog for a while now, you know I always come up with a PLAN. My family will probably have engraved in my tombstone – She had a plan. My plans don’t always work out, but for my sleep situation, I have a plan.

It may take a few days to get the brain on board, but maybe by the time the weekend is over, I will be acclimated. I’m going to go back to eating in either the kitchen, dining room, office – anywhere that is NOT my bedroom. I’m not going to watch my soaps in my room. I have a wonderful hi-def television in the living room and it’s about time I started using it. Same thing goes for watching evening programs. In short, my bedroom will not be for watching television when I’m supposed to be sleeping.

Imagine that – my BEDroom will be used for sleeping, resting, recharging and/or maybe a little light reading before sleep. If my room becomes a sleeping place again, maybe I’ll get some sleep.

The door to my room will be shut and I might turn on a little “white” noise to block out the sound of Riley’s nighttime escapades. My humidifier might just do the trick. I’m supposed to be using it anyway.

Attaining any normalcy while in the midst of the insanity of caretaking an end-stage alcoholic is an extremely difficult task.  Unfortunately it is a series of trial and error of different scenarios. To top it off, what works today may not work tomorrow. As Riley gets deeper into Wernicke and loses his ability to reason or the recognition of night from day, things will get more difficult. I expect that and that’s all the more reason I need to get as much rest as I can while I can.

Yes – I am more productive early in the morning, but maybe I’m more productive because I burn out earlier. I think I will still be more productive in the morning, but I’ll just me more rested and as a result thinking with a clearer mind. OMG!! I might start making sense!! Where would the fun be in that!?!?

Alexandra's story...

Today I got an e-mail from one of my followers who had an interesting story to tell. She relates a recent visit to an emergency room in her area. It’s just another example of how the medical community fails to understand “end-stage” alcoholism and how they can help rather than see these patients as “throw-away” people.

This is Alexandra’s story:

I had quite an eye-opening experience at the ER today. Donald is my alcoholic "friend" and he is 50. His alcoholism is progressing and until last week he was still very functional. He was diagnosed with chronic calcific pancreatitis a few months ago, when he went to the ER in great pain. He's on Medicaid and goes to the local clinic where all the other Medicaid patients go and they were supposed to refer him to a GI doctor but never did.

Donald has pretty much stopped eating as of last week. He stopped bathing and changing his clothes. He's very confused when he's drinking and asks the same questions over and over. Some of his questions are getting quite nonsensical.

Last night he stepped on something in his room and cut the bottom of his foot. There was blood but he didn't show it to me until this morning and it had stopped bleeding by then but since he has diabetes, I told him maybe a trip to the ER would be a good thing because maybe he needed some stitches. I thought they could clean it up put in a stitch or two and properly dress it with bandages. I also hoped for a shot of antibiotic.

So I dropped him off at the ER door and went to park the car. When I got inside, he was telling the nurse that he had been ice fishing and fell through the ice and cut his foot! I shook my head and told the nurse no, that's really not what happened. Donald looked at me and said "It's not?" He was dead serious. I had heard of the guessing that alcoholics do when they can't really remember stuff but had never seen it in him this bad.

Then the doctor came in. I told the doctor he cut his foot, and that he was also losing weight, was having a lot of shakes and confusion and was throwing up a lot, etc. I also told the doc Donald had been diagnosed with pancreatitis. The doctor asked me if he was still drinking and I said yes.

I could see a look of disgust come over the doctor's face; it seemed as if, all of a sudden, Donald was a total waste of his time. The doctor told me that as long as he was still drinking his pancreatitis would get worse. He then barely glanced at Donald's foot and said to the nurse "just clean it up, put a Band-Aid on it and get him out of here," then he turned and left the room.

Then it was the nurse's turn. She said to me that he needs to stop drinking (Duh!) and that I shouldn't buy him anymore alcohol. I told her I don't buy it, that he goes and gets it himself. The nurse responded with he shouldn't be driving and I said that he doesn't drive, he walks! Then she said that lots of people have quit drinking, I should just "make" him stop and "all that happens is that they just get the shakes for a couple days and then they're ok."

I was just floored. She left the room. Both the nurse and the doctor had Donald just lying there with his shorts on and didn't even get him a blanket or gown. They knew he has diabetes, didn't bother to check his blood sugar.

Donald wanted to leave. I agreed since it didn’t seem that they were going to do anything for him anyway. He struggled to get his clothes back on and we left. No one seemed too concerned.

I just couldn't believe the callousness of that doctor and nurse. I realize the people in the ER are overworked but to just blow off someone just because they have an addiction is so sad. I wanted to get that doctor back in there and have him take a good look at Donald lying there all yellow and skinny and ask him "DO YOU THINK HE WANTS TO BE THAT WAY?"

It's sad to me that a doctor and nurse would think that alcoholism is so easily stopped and all someone has to do is stop drinking and that will be the magic bullet for this disease.

Unfortunately Alexandra’s story is not so unusual. Our medical community should treat all patients with the idea that they will help do what they can do. In this case, his foot needed to be examined and treated. It shouldn’t have made any difference that he had been drinking. Of course, we all understand that if he doesn’t stop drinking, he will continue to digress. But, that doesn’t mean he should get an infection in his foot and left with a new problem to be faced.

I understand that doctors want are in the business of saving the lives of people who want to be saved. I understand their frustration. All end-stage caretakers feel that frustration acutely. We should not be treated as though we don’t know what’s going on. Believe me. We all know exactly what’s going on.

If I had breast cancer and had cut my hand while washing dishes, should my hand be treated in spite of the fact that I may not live three more months. Of course it should. Why should it be any different for a person dying of any other malady?

Clipping to fiscal health...

I spent yesterday with one of my surrogate daughters. She’s not exactly an extreme couponess, but she is the next best thing. We went up and down each aisle as she showed me how to calculate how much an item would actually cost if I used a certain coupon. I’ve been couponing for years, but lately I haven’t been using them as much. When she offered to help me, I jumped at the chance because I know that soon my financial situation will change drastically. Besides, what’s not to love about spending time with one of my girls!

The grocery store we went to is almost two hours away from me and I’d never been there before. I was pleased with all the different things they had to offer – like Tuscan stuffed Portobello mushrooms and fresh chopped asparagus with sliced mushrooms ready for stir-frying. I had to hold myself back or I would spend as much as I saved on things that I didn’t really need. But, I did load the stuffed mushrooms and asparagus into my cart along with a big bag of dog food (I had a $5 coupon).

Besides the fact that I’d get to spend some quality time with this person, the store was doubling all coupons up to $1.99. That’s a pretty good deal. But, I could only use 20 coupons per visit so I had to make sure I was using the ones that would save me the most. By the time the shopping was over I had saved as much as I had spent. OK. I’m a believer. I’ll be clipping every coupon I see and keeping them organized in my binder so I’ll be ready for the next trip – next Saturday.

I am trying to prepare for managing financially after Riley is gone. There’s not going to be much insurance money and I’m not sure if they will even pay because alcoholism may not be covered if is listed on the death certificate under cause of death. If the death certificate says something else other than alcoholism, I might get enough money to pay off my car and get him cremated. The Navy will take care of his burial at sea. There won’t be a memorial service since he really doesn’t know anyone around here. It will just be me, the kids and possibly a small handful of others, sitting around having a nice dinner and being happy it is over.

Fortunately, I will receive 55% of his military retirement pay and a portion of his social security. But, in essence I will have to live on half of our current income. I’ve always worked and had my own income which was always sufficient for my own needs. Things have changed, I don’t have an above-average paying job anymore and my social security check is far less than half of what I’m used to earning. In order to be a good girl scout and be prepared, I must get all this figured out before the inevitable happens.

My recent focus has been in finding my humor again and head towards a healthier lifestyle. I’ve taken some strides in that direction, but I must also lean towards a healthier financial life as well. I suppose I need a personal trainer for my money.

Although I’m a shopper at heart, I have always shopped with the idea of saving money rather than just getting what I would like to have. It’s like buying a yacht when you have no car. That makes no sense to me at all. I shop for high quality items that will last for more than just the moment. It takes a lot of work and research. I don’t mind, because I benefit in the end. My savings may not appear to be immediate, but if you look at the three-year (for example) big picture, I’ve saved a bunch.

If I had continued working, Riley would have continued to be covered under my life insurance umbrella and I would have received enough money that I would have been able to live nicely for several years. That is if I didn’t take long vacations and buy an Aviator. But, that insurance is gone because it was too expensive to continue it as a conversion. For many years Riley had a small policy for about $50K – that’s now gone as well because I didn’t know he had it until it had terminated.

I’m not fretting over the money. I have managed on much less than I will be getting after he is gone. My mother taught me the value of pinching pennies and how to get the most out of anything you have. Like Scarlett O’Hara, she turned drapes into a beautiful evening gown. My mother could take a pound of hamburger and turn it into two meals for a family of five. Old t-shirts were turned into dust clothes and old wash clothes were perfect dish rags. She canned fresh fruits and vegetables and made the yummiest jams and jellies. Clothes that I out-grew were passed down the line to one of my cousins. I learned a lot from my mother and I apply those teachings every day. It’s ingrained in my brain and to do anything else would feel unnatural.

One piece of advice I have for my readers who are involved with alcoholics who are not end-stage or to alcoholics who are still functional, would be to get an insurance policy now while you still can. Make sure it will pay even if alcoholism is the cause of death. Keep it to a smaller pay out so there won’t be a need for a medical exam. Then keep that policy in force no matter what. Pay it like you would your light bill. In the end it will be beneficial when you’re trying to figure out where the money is coming from for a funeral. Once the alcoholic gets to a certain point, he/she will be uninsurable and things will get complicated at the end.

Social Security will pay you a whopping $250 as a death benefit. The average cost of a cheap cremation is $1,800. So you better have at least $1,550 in savings just to get the alcoholic’s remains processed. That’s a harsh reality. Now you better have some more funds in there if you want a funeral which averages $6,000 these days. Of course, if you want flowers and a reception afterward – well – do you have about $10,000 side aside for that? If you’re like me, that would be an amount that I could not handle unless I had insurance.

I’m resourceful. Someone put that somewhere as a description of me one time. I don’t remember where or when, but I was proud for the designation. I will continue to clip my coupons and turn t-shirts into dust clothes. I’ll can and/or freeze fruit and vegetables when they are in season. My car will be paid off, but I’ll keep it well maintained in hopes of it lasting many years. I’ll keep my eyes open for a cheaper residence that will meet my needs and when the perfect one happens along, I’ll snatch it up.

Riley used to tell me that having a life insurance policy is like betting against one’s self. He never wanted one and saw no need because he would not get any benefit from it. It all goes back to his being self-focused. He always knew what he would get if I died, and liked that idea. But, he could never see how he would benefit if I got money as a result of his death. Little did he know, my life insurance policies do not provide from him at all. Instead a portion of the proceeds would be put into a trust for his care and managed by both my daughter and brother. The rest goes to my daughter and grandson.

So if I go first, Riley better take some coupon clipping lessons from someone. However, I doubt that anyone would be willing to teach him or even take him to the store. When one alienates so many people and family members for so long, one must expect, eventually, they will alienate you.

Who am I kidding?? I know my daughter will step in and try to save him. He is after all – still her father.  And that, my friends, is why I must continue in my quest to a healthier lifestyle, physically, mentally and financially.

There's a lot of us...

My grandmother had a saying, “It’s enough to make a preacher cuss.” She loved that phrase and used it every time she was frustrated or – as she would also say – exsasperatin’ over something. That’s pronounced ex-sas-per-ate-n. I’m sure she meant exasperating, but I like her version of the word better. It has character.

Caretaking is something I’ve done since I was a young girl. It was during my mother’s pregnancy with Evan (my fourth brother) that my grandmother became very ill with a kidney disease and came to live with us. She shared a bedroom with me. She shared and talked with me when the hallucinations, caused from her medications, didn’t have control of her brain. I loved her so much and wanted her strong, feisty qualities. For Grandma, having a kidney disease was not the worst thing about being sick. The worst thing was the loss of her independence. She hated being a burden. Eventually, Grandma was moved into a little cottage down the street. I spent my weekends tending to her while my aunt went out of town to work in a beauty salon.

The problem with caretaking is that, unless someone openly comes to your aid, you feel very much alone. I had a lot of family and they all helped me or advised me whenever I watched after Grandma. They were my support and my teachers. I always felt appreciated. But I was just a young lady, and my support system was comprised of much older women who didn’t have a lot of time to hold my hand. If they had had the time, they would have done the caretaking themselves. I was certainly not the first choice.

It is much the same for caretakers of end-stage alcoholics. We are seldom the first choice of caretaker in the eyes of the alcoholic. Heck, most alcoholics don’t even realize they are being taken care of. If they can’t acknowledge they are being taken care of, how can they appreciate or be grateful for having someone to take on the task. They can’t and they aren’t. It’s enough to make a preacher cuss.

Unfortunately, end-stage caretakers are different in that they don’t usually have a lot of people who are willing to lend a hand when things are difficult. The outside world gets tired of hearing the stories of wrong doings or absurd insanity. They just nod their heads and try to change the subject. What these outsiders don’t understand is that the constant reiteration is simply a way of reaching out for help. Oh hey, it’s not even a reach, it’s more like a cry out for help. The people you would expect to be “there” for the caretaker are not within reach or within the sound of the cry. Often they turn their backs and mumble something about making their own bed. It’s downright exsasperatin’!

If the caretaker is lucky, there may be a great Al-Anon group they can join. But, if you’re in an area like mine, there is only one in an area of 100 miles. And, my group, unfortunately, just doesn’t fit for me at this time and getting to the meetings is difficult. It does help to know that others in my town know who I am and what I am doing. For that I am thankful.

So it seems caretakers of end-stage alcoholics are really lone crusaders. We muddle along doing the best we can without much real knowledge of the true situation. We talk to anyone and everyone who will take the time to listen. We alienate people because we no longer have much to talk about except the horribleness of the situation. Everyone has advice. Everyone has an opinion. When we don’t take the advice or act on another’s opinion, we are deemed to be in denial. In some cases we are asked “How stupid can you be?” Well… I guess… by other people’s standards… we can be pretty stupid.

After awhile the caretaker begins to realize that the role they have taken is extremely lonely. They know they can’t be the ONLY one with this problem or the ONLY one who has made a choice to stay in this role. They are right. They are not the only ones.

I used to think I was the stupidest person in the world to take Riley back into my house. My brain and heart knew it was the right thing to do if I wanted to protect my daughter. But, I seemed to be constantly justifying the “why” of my actions. One part of me wanted to say – “Butt out! It’s none of your business.” And the other part of me knew I could not afford to alienate anyone who could possibly be a supporter in my cause.

It wasn’t until I started this blog that I found so many others in the exact same situation as me. It was comforting to know they were out there and they needed me as much as I needed them. They started commenting and e-mailing. I grew stronger with each one. I was energized by letting people know that there is help out there and that they could depend on others to understand.

I set up the Immortal Alcoholic page on Facebook and there was quite a bit of interest. But, people didn’t seem to post there very often. There was a group of faithful followers and that was good. But, I really felt there needed to be a more formal place, a meeting place similar to Al-Anon except for end-stager caretakers. I wanted a place for people to connect and support each other. I wanted a place for them to be able to vent.

Our Resource for Alcoholism Support of Family & Friends (OARS F&F Group) was created on Facebook as a private page. The only people who can view the comments on the page are members of the group. This provided some privacy and a means for the members to speak what is truly hanging heavy on their minds.

There are only a couple of rules about being on OARS. No one is allowed to be judgmental or critical of another member. There will be no hostility or derogatory comments. The page is like Vegas. What’s said there – stays there. That is until I remove it and I remove things often just to insure privacy. It’s a place where venting is not just tolerated, it is encouraged. Let it out – and then breathe!

It’s a small group right now, but it is growing. That makes me happy because it means people are finding they are NOT alone after all. They are not stupid or ignorant. The drummer they march to is not as unique as they once thought.

Originally, I only planned on visiting the page on Thursday evenings for the formal meeting. But, I’m finding that the members are not so much into the “meeting” as they are for the ability to write whenever they want. Someone almost always responds immediately or at least within a few minutes. It’s like talking to your neighbor through an open window about a recipe she shared with you. It’s comfortable, friendly, and if we could we would all meet in a mutually agreed upon city and have a cup of coffee.

Another nice thing about this page is that I don’t have to do anything to generate activity. I don’t have to give my input. No one is waiting on me. They just talk to each other. Imagine that – end-stage caretakers talking to each other!! I AM on the page daily and I try to post to comments often. But, it is gratifying to know that if I could not be there, it would go on without me.

So in the end, I guess you could say – I’m like my Grandma. I’m feisty, determined, and independent. But, I’m always willing to take support from wherever and who ever offers it. And, sometimes, OK – often -- I’m enough to make a preacher cuss!

Rehab & insurance stupidity...

I am in awe of the stupidity of some rehab centers and insurance companies. Well, to be fair, it could be that I’m the stupid one because I just don’t understand.

A family member’s husband is an end-stage alcoholic and he was transported to the medical center via ambulance. While racing down the highway, he flat lined three times. This man is at the end of his end-stage journey. Fortunately, he was saved and, miraculously, lived through detoxification. Over the past couple of years, he has been through detox about 4 times. Each time he immediately returned to drinking.

Imagine this wife and children’s surprise when he announced he wasn’t coming home right away, but rather going to rehab. Well, OK, so it’s not is first time there either. In spite of that, everyone rallied around and offered up support for his decision.

The wife was asked if she would like to participate in the family program. She has been reading my blog and understands the importance of educating herself and her family in everything about alcoholism. She had never attended a family program before and she enthusiastically agreed. She asked if her husband’s sister could attend with her. The center responded that any family member may attend.

The ladies were excited for the opportunity and began to prepare for the 300 mile trip to the center. They didn’t have a lot of money, so they decided they would bring an ice chest so they could get food from a store and use the motel microwave to heat it up. They used their coupons to shop, cashed in aluminum cans and used every resource they had to scrape up some money.

Then they received the phone call telling them that the center needed payment for the program before they could reserve them a place. The cost is more than $200. Huh??? They were under the impression that they were being invited by the center as part of the husband’s rehab program. They thought the cost of the family program was included in the cost of alcoholic’s program. They were wrong. It not only was NOT covered in the alcoholic’s program, it was also NOT covered under the wife’s health insurance plan.

When I say NONE of the expenses were covered, I mean NONE. The wife not only has to pay the program fee, she also has to pay for her gas, lodging and food. She will not be allowed to use the cafeteria facilities at the center – which she was hoping she could do in order to have one solid meal a day. The program is 5 days long and that’s a long time to subsist on Hot Pockets, sandwiches, tv dinners, oatmeal and the $1 value menu of fast food restaurants.

A hasty recalculation was made and they determined they could not afford for the sister to attend the program. The wife asked for some money from her husband’s parents and she was able to pay the fee. She left on Sunday night and will return on the following Saturday after her husband’s release.

My irritation lies in the fact that the rehab center is so self-serving that they did not include the family in the alcoholic program’s cost. What is up with that?? Doesn’t everyone in the substance abuse industry understand that to return an alcoholic to an uneducated family environment is like throwing a fish back into a polluted pond?? Isn’t that common knowledge?

I find it counter-productive to supply an alcoholic with all the keys to achieving and maintaining sobriety and also expect the alcoholic in turn to educate the family. The alcoholic has all he/she can handle just staying inside the sobriety life preserver. The family inadvertently sabotages the alcoholic’s effort, not because they WANT to, but rather because they don’t know any better.

Fortunately, for this alcoholic, the wife has been reading my blog and has my workbook (The Workbook for Caretakers of End-Stage Alcoholics). She was fairly well-educated before she got to the center. But still, she says the program was good for her because it was more of a classroom environment. She didn’t want to demean what she had learned from me, but to hear the same things in a classroom environment made the whole thing more “real.” As a couple they received some one-on-couple counseling and that was extremely helpful.

The couple was very grateful they could gather the funds for the program and have the wife attend. It was money well spent. The only regret was that the sister (who is extremely close to the alcoholic) wasn’t able to reap the benefits. The sister will gain knowledge from reading the blog and helping to update the wife’s workbook.

No one knows for sure how long the alcoholic will stay on the road to recovery. We all pray he will maintain his sobriety. He’s a really great guy, wonderfully devoted father and an award-winning grandfather – that is when he is sober.

If you are a director of a rehab center – do you include at least ONE family member in a family program covered in the fee of the alcoholic’s program? If not – why not?? I truly hate to say this and I hate even imagining that it may be true – but is your center looking forward to the alcoholic’s relapse so they can be re-admitted to your center?? That would let the center reap the financial reward from the insurance company — yet again. Is it a one-for-two kinda thing? One person – two fees?

Just the suggestion of such a thing is so distasteful to me that I hope I get lots of angry comments, not just from my readers, but also from rehab centers around the world. Defend yourself – PLEASE – tell me why it makes sense to NOT include the family program in the cost of the alcoholic’s program.

I know for a fact that there are rehab centers that include a family program. If they can do it, I see no reason why they can’t ALL do it.

And to all the health insurance companies – do you not understand that getting the family member into a program might just prevent health issues later on?? Stress causes illnesses. Alcoholism or any substance abuse causes stress for the families. This is not a new, enlightened statement. So why are the insurance companies so far behind the times? The fact that they do NOT cover family programs as an individual benefit only costs the other policy holders more money. Who do you think pays the price when insurance companies have to pay out for heart attacks, strokes and a variety of other illnesses? The premiums go up and everyone with a policy pays. Well… maybe that’s what they want… for us to pay higher and higher premiums. I guess there may be big money in that.

I’m just a simple girl. You can add to that – loud-mouthed and opinionated. I’m not a medical professional or an insurance expert. However, I am not stupid or ignorant. I strive to be informed. Maybe I have unrealistic expectations as I have a tendency to do that, but I expect anyone dealing with alcoholic/addiction rehabilitation to have a realistic, informed and intelligent program leading to sobriety. I expect our insurance carriers to do the math and stop sticking their heads in the sand as to the far reaching consequences of addition.

Does anyone else see the absurdity or am I the one who is off the rocker?