No more nurse...

I hate it when I misunderstand a purpose or intention. I learned something yesterday and I should be happy, but…

Riley is doing very well. Seems I’ve been an over-achiever at making sure he eats SOMETHING, takes all his medication, and rearrange the furniture to prevent so many falls, Riley’s over all condition has improved.  In fact, he’s improved so much, he’s no longer going to be considered as a “hospice” patient. Instead, he will have a visiting nurse and a bath aide for only two more weeks. Then I’m on my own again.

The fact is it’s not so much that he has improved, but rather he will have reached his limit for provided care under his current insurance. We have great coverage, but his wounds are healing (from his constant picking and scratching – a condition created by the lack of bathing), and he is falling less often. There are still a lot of issues, but I guess there is some kind of scale and he doesn’t reach the right number on that scale. In short, he is better than he was even though in reality he is just the same. He is still dying, but there is really nothing that can be done and it can no longer be determined that it will be within a certain time.

Off the record, the nurse confided that she was really only there to evaluate the need. Riley doesn’t really need anything a nurse can provide. She is simply the visiting nurse who provides the information to the insurance company so they can determine what he is eligible for in terms of professional care. Evidently the primary care doctor didn’t push for anything more at this time since Riley has an excellent caretaker within the home. They could not monitor him as closely as I am already doing.

I confided in her that I needed to keep Riley alive for another six months, or at least until his VA application was approved. She said, in her opinion, his heart would not hold out that long. His blood pressure is all over the place – high, low, very high, normal within days of each other. His heart beat is very erratic and is stopping for a few seconds every minute.

When I asked what was most dangerous, the ammonia level in his brain, or his erratic heart? She said it was a toss up. The ammonia will put him into a coma and then his heart will give out along with the rest of his organs. OR, he will have a heart attack and just be gone. Either way, the end is near.

In her opinion, what I needed was a personal assistant to come in maybe 4 or 5 days a week. The assistant could tend to Riley’s personal needs, stay awake while I’m sleeping and provide him some companionship. The assistant could also help to transport him to the doctor’s or just get him out of the house. There is no insurance coverage for that and it is certainly not in my budget.

She also told me, off the record, as Riley gets worse, I can always call the doctor’s office and ask for another evaluation. It seems our doctor is good about that. I should wait about a month (if he lives that long) and then call.

It’s a little frustrating that I won’t have the nurse or the bath person anymore. But, on the other hand, Riley dislikes having his day disturbed and becomes irritable when they are here -- especially the bath person. He hates the bath person. He’s like a cat when it comes to bathing – he just knows that water is going to make him melt away to nothing.

Today, I don’t have any fight left in me. I’m too exhausted from trying to jump to his every need. I know I'll be better tomorrow. I DO have nearly all his medical records together and ready to be sent off to the VA. I have my fingers crossed that all my record gathering will pay off in shortening the processing time for his application. The only thing left for me to do is find a way to get him to a VA Hospital for his medical evaluation. Once the application is approved, I will be able to afford a full time personal assistant. What a relief that will be!

I suppose I should be happy that he is getting better?? I’m a realist. I know he may look better on paper, but the real person is no better today than he was a couple of weeks ago. He’s on the edge. I doubt he will last until the VA approval.

But still my plan stays the same, if he becomes unconscious, I will still call 911. If he survives, I will place him in a nursing facility – I know his insurance will cover that. It’s really the best way to keep both Riley and me safe. According to the nurse, the stress of detox, with all the ammonia in his brain, will most likely leave him with over whelming dementia. She asked, “What kind of life would that be for him?” I answer her “The life of his own creation.”

Tornado repost...

With all the tornados whirling around our states, I thought it would be a good time to re-post one I wrote last year.

Tornado warning… (5/3/2011)

When the Emergency Broadcast came over the television announcing that we were under a Tornado Warning, I gathered my stuff – blankets, pillows, laptop, water, etc – and put it in a secure place in my bathroom. I was ready.

Riley was in his rocking chair watching his usual NCIS. I told him we needed to get his bathroom ready in case the worst came about. He just said – “Don’t worry, I’ll be fine.” And being the good little caretaker that I am – I stocked his bathroom. Both the bathrooms are small and there is really only room for one person in each.

As the night wore on, I settled in and listened. Wind, rain, hail, more rain, quiet, wind and more wind – but there was no rumble. I was waiting for the rumble sound of an oncoming train. It never happened – and I was thankful.

As I was waiting, I could feel the house swaying with the wind. We have a brick rancher – solid as possibly could be – but the wind was so strong it was moving the house. I thought of the three little pigs who built their last house of bricks. What a smart thing to do.

In spite of the three little pigs’ wise decision to use brick in the construction – some lyrics kept running through my head -- but they weren’t verses about the pigs’ quest for a secure dwelling. Instead, I was hearing in my head the lyrics to a song from The Wizard of Oz.

The wind began to switch – the house to pitch and suddenly the hinges started to unhitch.

Life with an alcoholic is much the same as a house in the middle of a tornado. This first verse could well define what it is like to watch the beginning of an alcoholic downfall. Things are unsettled, the family never feels secure and things start to fall apart.

Just then the Witch – to satisfy an itch went flying on her broomstick, thumbing for a hitch.

The alcoholic (the Witch) needs to satisfy the craving for alcohol and so he/she seeks it out. Sometimes they ask others to help them obtain the alcohol – as in hitching a ride to the liquor store.

And oh, what happened then was rich.

I think if we substitute the word “sad” for the word “rich,” this would be exactly correct. Because what happens after the alcoholic gets the booze is rich with sadness.

The house began to pitch. The kitchen took a slitch.

Things become increasingly upsetting in the alcoholic household as the drinking continues.

It landed on the Wicked Witch in the middle of a ditch, which was not a healthy situation for the Wicked Witch.

The consequences of the alcoholic’s actions cause him/her to land in unpleasant situations. Eventually the health of the alcoholic deteriorates and puts the alcoholic’s life in danger.

Who began to twitch and was reduced to just a stitch of what was once the Wicked Witch.

The person who was once a vital, productive, happy member of the community is reduced to becoming a mere servant of alcohol. At that point, the entire family is not in Kansas anymore, but rather in some uninhabitable place – like Antarctica. No matter how many times you click your heels, those ruby red slippers are not going to help you now.

I’m told by fellow country dwellers that this is unusual weather for this time of year. Funny, in Linda and Riley World – living in a tornado is a way of life.

Balancing the seesaw...

If I make a change in my life and then I stand back and look around, I see that I’m really the only person who has changed. As a result of the change, I may not want the same things as I did before. Maybe I want the same things, but I want to add other things into the mix. Still, I’m the only person who has changed. Is it right for me to expect others to accept my changes thereby forcing them to make changes in their relationship with me? Whether it is right or not really doesn’t matter. What matters is that one change, whether it is an addition or subtraction, doesn’t happen in a vacuum. Others are always affected by changes we make.

Change can be difficult for some people. If someone in our lives makes a change, it can be hard to adjust or accept. Even if that change is for the better, the status quo can often feel more comfortable. This is especially true in families. One family member attains sobriety after a lengthy marriage with alcohol, and the whole family is affected. Even if the family knows it’s for the best, they may still struggle to find a balance.

It is inevitable. Change is going to happen no matter what. An alcoholic may go back to drinking or choose sobriety, either way the person who is not making the decision to do either one is forced to be a party on the seesaw. If you don’t want to be on the opposite end, you can always walk away. Oh, but that, in and of itself, means you are making a change.

My life with Riley has always been a series of changes. He’s drinking. He’s not drinking. He’s living with me. He’s not living with me. Those are just the big ones and I handle those really well. I’m good at making those adjustments. But, it’s the smaller ones that seem to get to me. Today he’s eating, tomorrow he’s not. Today he is peaceful, tomorrow he’s agitated. Today he likes roast beef, tomorrow he will only eat chicken. Finding a daily balance seems impossible.

Just a few weeks ago, I had no help with Riley. It was just me on the seesaw trying to keep it level. It meant that I had to stand exactly in the middle. Today, I have a lot of help with Riley. The bath aid comes once a week and the visiting nurse comes out at least once a week. I have support and that helps me stay balanced. Although, at the time, I didn’t see much sense in taking Riley to the hospital to have his potassium levels stabilized, I am grateful now that I did. If he had not been hospitalized, I would not have gotten the help that both, Riley and I, need at home. The change has been good.

The bad side to this change is that I have had to do some fancy footwork to prepare for all the contingencies. In the past, I was just going along and waiting for Riley to die. But, now, even though he is still dying, I’m feeling the necessity of devising a plan – actually several plans. It has to be more than one plan because Riley is the “immortal” alcoholic. It doesn’t matter if the nurse says he could be gone in a few days – he could still end up with years to go. I’m standing up straight in the middle of the seesaw and waiting to see which end will drop first.

Of course, the past experiences with Riley and “you’re gonna die right now” scenarios have left me in the State of Denial. I can see the state borderlines right there between the States of Peace and Chaos. I hear what the nurse is telling me and I’m nodding my head in agreement and understanding. But, deep down inside I deny that what they tell me is actually going to happen. One end of my seesaw is named “Immortal” and other end is “Gonner”. Right now Gonner is up in the air and Immortal is almost touching the ground.  From the viewpoint of the nurse, it’s the opposite situation.

No matter which end of the seesaw is higher, a change is sure to come. Even if Riley is immortal, things will change because I may no longer be able to take care of him and he may be forced to detox and move to a care facility. If Riley does prove he is mortal after all, that will mean another change. Both possible changes mean a change in my lifestyle.

All these changes are difficult for my family. They are unable to deal with the daily up and down of the seesaw and have absented themselves from the situation. They also live in the State of Denial. Although they see things may change and Gonner may end up firmly on the ground, they really just see everything just as it was. For them, nothing has changed. Riley is a drunk. Riley is miserable to be around. Same-o, same-o. No change here.

I’m wondering what their expectations will be of me when Riley is not around – either in a nursing facility or at the bottom of the sea. Will they expect me to spend every weekend with them? Will they except me to run to them on a moment’s notice? They are already resentful of my not spending time with them because of my Riley Duty. Even though they say everything will be the same, I know better. I know all of us will be forced to make changes – some mostly good and some bad.

There is nothing to do but wait and see. Wait for the changes and adjust myself on the seesaw.

I can take it...

Last night I made a valiant attempt to host the Thursday night OARS meeting. I haven’t been able to do that for a couple of weeks and I miss all my members providing support, encouragement and lots of humor. I really wanted my “fix” last night. But, Riley had other ideas and so the meeting went on without me. I’m happy that everyone is so comfortable that they just keep going in helping each other. I’m very proud of them for being open and caring to everyone in the group. And, by the way, the group is very welcoming to new members. If you’re searching for people who understand and listen without judgment or criticism OARS is the place to be.

 I don’t understand how “waiting for the end” can be so hectic and chaotic. There are things to buy, schedules to coordinate, menus to plan, and meetings to be kept. Yesterday was one such day.  It started with cooking Riley breakfast. After that, I was in my office making phone calls to facilities where Riley had been a patient. I am gathering his records so they can be submitted to VA in a complete package. Then there was an in-home meeting with the VA representative to go over what else was needed. Usually, VA takes care of everything involving gathering of the records. But, in my efforts to hasten the application process, I am doing most of the gathering myself. Anyway, after that I had a meeting with Gill, grocery shopping, prescriptions filled and shopping for a bath bench and oil-filled heater.

When I returned home, Riley was “in a mood” as it were. I knew he had been timing me and I had been gone much too long for his comfort. He knew better than to say that I was late or ask what had taken me so long. But, his attitude said it all. He wanted to put away the packages I brought in.  It is how we usually unpack bags of stuff from the store. That way he gets to see what I buy and many times there are little surprises for him. It’s a game we play, but today the game was not working.  He questioned every purchase and then complained that I was visiting with the teen age girl down the road who wanted to talk about teen-age alcoholism. My focus was not on Riley and that was troublesome to him.

It may not be recognizable to some people but what was really happening was that Riley was abusing me. There were no fists flying or even very much yelling. It was fairly quiet. But there was an undercurrent of anger coming from the kitchen. I knew what was wrong. I had been gone too long and was not giving him immediate undivided attention. Riley was furious with me, although, he would never come out and admit it because to him having anger means he’s not able to control his emotions. Somehow he thinks maintaining control makes him better than other people.

Riley has been abusing for me years. He’s just like most other alcoholics and I’m just like most spouses of alcoholics who, in the beginning, do not recognize the abuse. It comes in small doses – much like the Frog Soup Theory. Maybe he keeps his drinking money out of the salary household bank deposit – and you don’t know. You have to work twice as hard to make up the money – that’s abuse. Maybe he never spends Saturdays helping you clean the house or dealing with the kids – that’s abuse. Maybe he will leave you a long list of things that need to be done and maybe he could just as easily do those things – that’s abuse. He may not say anything to you about any of it, but you just know. There is a feeling in the room – the proverbial elephant that no one ever talks about. It’s abuse.

Somewhere along the way the alcoholic begins showing disapproval of the things you do and then calls you names or belittles you. That’s abuse. You’re now walking on egg shells because you don’t want this discord in the middle of family events or day-to-day activities – that’ abuse. Telling you he will do something and then not doing it – or lying that he has done it – that’s abuse. Name calling, degrading your sense of logic and making your life generally more difficult is abuse.

Of course then there’s the biggee – physical abuse. It will seem that you have so disappointed him that he will lash out with a slap or hit. Maybe he will even tell you it was an accident. Trust me it was not – AND that’s abuse. Each time he gets behind the wheel of a car and you worry about what he’s doing to himself or innocent bystanders – that’s abuse.

Besides all that, abuse comes in all sorts of fashions. There is abuse of power, abuse of inanimate objects, abuse of emotions, abuse of society. When there is an alcoholic involved you can be sure that he’s abusing everything and everyone around him, but especially the spouse/caretaker.

The question is, what do you do about it? No one can make any decision for you and we are all prone to forgive especially when it is someone we’ve vowed to love and accept no matter what. Most of the time, the spouse doesn’t even understand that they are being abused. Riley abused me over the nearly entire 40 years that we’ve known each other. I didn’t really recognize or understand it until recently. Now I see it. Now I understand. It’s too late for me to do anything about the past. But, I can make sure it stays in check in the present.

So, I want to do the OARS meeting and Riley comes in and makes a comment that I’ve been gone all day long and haven’t spoken to him at all for the entire day. I know none of that is true, but I decide to forego the meeting and deal with the issue. I return to the den and ask what it is he wants to talk about. He wants to know why our house is such a mess all the time. I want to say that the house is not a mess and defend the cleanliness level to a person who has feces smeared on his bathroom wall. But, I don’t do that. I simply say that the housekeeper will be here in the morning and what else did he want to say. He asked why I didn’t put hard-boiled egg is his chef’s salad. I told him I forgot about the egg and would remember it next time. And so it continued on… And that, my friend was abuse and I gave into it. Never once was there a real conversation or a slight smidgeon of thankfulness or gratitude for anything I did do that day. It was all about what I was failing to do or had failed to do.

I should have told him I would come talk to him when the meeting was over. Period. I should have closed my office door and gotten the support I needed from my group members. But, I didn’t. My choice was the abuse because it seemed like the easiest thing to do.

When living with an abusive person, the spouse gets presented with these choices over and over again. The spouse must weigh the potential outcome in their mind before acting. If you could slow down time, maybe you would see this image of the spouse talking to themselves about which road is the best to take. If I do this, then this will happen or if I do that, maybe that will happen. There’s a battle going on in there.

So, I often choose the abusive route. I deal with it. My reasoning is that Riley’s days are numbered. I know and understand he is a sick man and could emotionally  snap in a moment’s notice. So I tread lightly to keep the tiger inside him sleeping. I don’t have to placate for very long. He is sleeping more now and that provides me with solace. But the bottom line is no matter what he says or does, I know that I’m a good, intelligent, loving person – no matter what he says or what his passive aggressiveness wants me to think.

I am more fortunate than others. My abuse is at its end. For other’s it is just beginning and all I have to say is decide early on what you are willing to accept. Recognize it for what it is. And know that once you agree to accept the Bull Stuff that’s being handed out, you are agreeing to a way of life that may leave you feeling useless, stupid, unlovable. Get off that cycle now. Put a stop to it. Decide now that you are worth a solidly reciprocal relationship where things are shared and not just managed. Be the person that we all know you are – highly intelligent; very confident; genuinely loving; and over forgiving. It’s OK to take the easy way – as long as you know inside yourself that you’re doing it because it’s easy and not because you accept it as a way of life.

Waging war...

It was one year ago yesterday that Riley went to the store for some milk and came home with a 24 pack of beer. It was the beginning of the end for him. I wish yesterday had come with us being able to celebrate a year of sobriety, but, of course, that was just wishful thinking. And now, here we are, at the end of his life and I wonder – was it really worth it? I’ve clearly stated before that the reasoning for why a person would degrade themselves for the sake of alcohol is beyond my comprehension.

I remember reading somewhere that in our early settler days, the merchants provided whiskey to the Native Americans so that the merchants could cheat them out of land, pottery, and other items. Native Americans became addicted to the whiskey and that ensured a high trade volume for the merchants. The merchants took the Native American artifacts back to the homeland and sold them for a high price. So, the fact is that the merchants took advantage of the Native Americans for the sake of money. The Native Americans sold themselves out just to get some whiskey.

We hear a lot these days about biological and chemical warfare. A lot of money goes into creating ways for one side to do another in by means of a silent killer such as a virus or a non-distinguishable gas. I wonder what would happen if one side started spiking the drinking water supply with small amounts of alcohol and then increasing the amount slowly. I imagine that eventually there would be a whole nation of alcoholics or at least a whole segment of alcohol damaged populace. In time, the alcohol would render the population with the inability to think or reason clearly. Just like the Native Americans, they would be easy pickin’s.

OK. So maybe it would not be as quick acting as the opponent would like. But, it would be far cheaper than hiring a bunch of scientists to re-invent the horse. And it wouldn’t be creating a new malady for the entire world to worry about getting into the wrong hands.  I’m sure someone somewhere sometime along the way, has thought of this scenario. Maybe Hitler was working on a plan like this.

Of course, I hate the plan and the scenario. I hate it that people have been duped by others to believe that just a little couldn’t hurt. I believe that if two factions want to war it out, they should each have a certain number of warriors send to a far off place. They should fight it out in hand-to-hand combat and the last warrior standing wins. Quick, clean and to the point. No injured children. No raped or pillaged villages. No collateral damage.

It’ll never happen. The reality is that war is good for the economy. It creates jobs building war machines and hiring soldiers. It is profitable. Just like alcohol is profitable. Our government recognizes the value of the alcohol industry. In some states the liquor industry is controlled by the state government. Alcohol is only available in state regulated stores manned by government employees.

I know that alcoholics wage a war inside themselves. It’s a war between the desire for the alcohol and reality of common sense. I’m not an alcoholic, so I can only imagine what kind of war that would be. Losing that war and becoming a victim of substance abuse results in the ultimate loss – loss of life. And the effects are far-reaching. The collateral damage is overwhelming. Children, families, homes are all included in the circle of devastation. There are so many people waging this war right here and now, that I wonder if the water has, in fact, been spiked with the awful juice.

Riley has lost that war inside himself. Although for him, he never considered it to be a war. He made a decision. His choice was to die an alcoholic death. Now that our country home is a buzz with hospice workers, bath aides, and others who simply want to make Riley’s last days as comfortable as possible, he is losing his ability to hold onto his life and he just doesn’t care. He enjoys the company, but denies why they are all here.

I’m told over and over that there still may be hope. Riley could still get through all his bodily devastation and return to sobriety. I’m a realist and I follow Dr. Phil’s theory that the best indication of future behavior is past behavior. I know that long-term sobriety will never be something that Riley will ever have or appreciate.

Even if Riley manages to survive detox and achieves sobriety. The alcohol has so damaged his brain function that he will most likely suffer from permanent dementia. If that is so, I most likely would have to place him in a nursing facility. I don’t believe I could physically care for his needs. So, what kind of sobriety is that?? It’s like saying, you can be sober and live, but your life will be contained within this specific space – much like a prisoner. The alcohol still wins.

I believe I predicted somewhere that it would take about a year for Riley to get to this place – the end of his life. Sometimes I hate it when I’m right.

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!

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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.