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?

OARS and My Route to Help Forum...

OARS F&F Group on Facebook is a private page devoted to providing support to caretakers of end-stage alcoholics. We hold a weekly meeting at 7 p.m. EST every Thursday. This is an active group and there is almost always someone on line for whenever you feel a need to vent. You don't have to wait for the meeting to talk to someone.

You will only find support here. You will not be judged or ridiculed or criticized in any manner. What you will find here is a listening ear. What you write is private so only members will be able to read what you are writing. I delete posts and comments when requested and try to keep the page clean.

To join the OARS F&F Group go to Facebook. Then to the OARS F&F group page and request permission to join the group. I’ll accept your request as soon as possible. Next find the post from Wednesday (1/25/2012) at 4:58 pm and enter the area where you reside. You don’t have to be specific just give me a general idea. Then post a brief description of your situation. You will be welcomed by the members and ready to vent away – or ask for advice or opinions. Just know that we are all in the same boat and we are each our own lifesavers.

A NEW FORUM IN TOWN:

I was contacted by Ash Davidson who has a site dedicated to recovery from all substance abuse issues. He started this site about 7 months ago and also volunteers as a substance abuse worker. Ash has asked me to post in his forum on his site.

I checked it out and have agreed to post in the forum. I will also be writing an article that will appear on the site. The forum is a good place to give your opinion or offer input on the topics already in progress. If you want, you can start your own topic.

We all know that end-stage caretaking can generate hostility as it did on a forum site that I will not name. This is a chance for us to get some attention concerning our needs without the hostility shown to us in the past. On this site we can advocate for better communication with the medical professionals, the need for hospice, insurance coverage for family programs, etc. We are an under-recognized group and it’s time we made our voice heard.

Please join me on My Route To Help (http://www.myroutetohelp.com/) – and speak up!!

In the crapper...

I love Fridays. That’s the day my housekeeper comes and wipes away a week’s worth of dirt. After she leaves, my house smells clean and feels clean. She vacuums and dusts and makes everything shiny. She is well worth the money I pay her.

There are parts of the house that I don’t allow her to clean. Riley’s room and bathroom are off limits to her. It’s a little dangerous for anyone who cleans Riley’s bathroom, so I prefer to do it myself because I have a system. His bedroom is up to him. He changes his own linens and never eats in his room, so it isn’t too bad. That is except for the times he’s spilled drinks, vomited or pooped at his bedside. Fortunately, I have an area rug over the carpet so I can simply throw it out and get a new one.

When I clean the bathroom, I look like one of those people in a movie about a villain releasing a bio-chemical virus into the air so that he/she can rule the world. My camera is broken or I’d take a picture of me in full bathroom cleaning gear and so you could see how ridiculous I look. I wear a disposable paper surgical gown and pants, a surgical mask, goggles, and latex gloves. In my hand I have a roll of paper towels and a spray bottle of bleach/water. I also have my steam mop ready and waiting as well as a pail of other cleaning supplies. After all that – I’m ready for task that will probably take me 2 hours.

I know what you’re thinking – this broad is definitely a crazy over-achiever. OK. I understand where you’re coming from. Maybe this will help you understand – the first week of the New Year 2010 I was in the emergency room. I was unable to control my bowels. We are NOT talking about a little ooooppps here, if you get my drift. I was feverish, in pain, vomiting. I was so sick and I thought I had the flu. I was informed that there was no flu “going around” at that time and I had probably contracted some kind of intestinal virus. They took some tests, prescribed me some meds and sent me home.

Two days later, I got a call from the public health department, informing me that I had salmonella. I had to tell them where I had eaten over a period of time and who I had been in contact with outside of my family. Before she even finished her explanation, I knew how I had gotten it.

I had cleaned Riley’s bathroom. I had on gloves, so I thought I was safe. I didn’t realize until I talked to the public health nurse that it doesn’t take any more than a speck of crud to make me sick. I didn’t have on a mask or goggles. I could have breathed in particles of poop that were dislodged from surfaces while I was cleaning. They could have entered through my eye sockets. When I was cleaning the floor, I was on my hands and knees in my regular clothes. I didn’t think about removing those jeans right away and throwing them in the wash. I thought I was doing a good thing by wearing the gloves. I was misinformed.

Salmonella is a horrible illness. People have been known to die from it. If you’ve ever had a stomach bug, think about that multiplied by ten. It is violent. There is uncontrollable, projectile everything, fevers and shakes, pain everywhere from the whacking of your muscles. And it’s contagious. So you’re pretty much isolated through the entire thing. I will wear full hazardous waste attire if it will keep me from contracting that again.

So, I leave the bathroom to be cleaned every other month rather than every week. No one uses the bathroom but Riley. I keep the door closed, but eventually the mess will appear on the door jambs and walls leading to his bedroom. That’s when I know it is time to get my stunning outfit on and clean up what he leaves behind.

Riley makes small attempts to clean it, but those attempts are happening less frequently now. He really doesn’t care about cleanliness. After all, he hasn’t showered in 18 months. If he doesn’t care about his personal cleanliness, why would he care about the bathroom?

I accept that he doesn’t care about his personal cleanliness or the bathroom. Why, then, does he scream at me when he thinks I’ve neglected my own room or office? Oh yeah! I forgot for a moment! He’s brain damaged. He has lost the ability to reason or logic. There’s no point in my stating the obvious to him because for him what makes sense is what is coming out of his mouth at the moment.

By the time I remember the brain damage, I’m already frustrated and just a bit guilty because my room is messy. I haven’t chided him in any way about his room. I seldom mention it or his odiferous body. When he yells at me about cleanliness, it’s always based on some way he thinks I should be.

I wish you knew Riley way back when. He was a handsome guy. He was meticulous about his personal hygiene, clothing and environment. He always cleaned his apartment on Saturday morning and that was also the day he picked up and dropped off clothes at the cleaners. I loved that about him. I loved the order of his life. It was a stark contrast from my semi-chaotic life at my parent’s house with multiple kids and uncertain schedules.

During the times when he is upset with me over the status of my room or my stack of undone laundry, I see bits of that old clean-freak Riley. There must be a battle going on inside his head. The old Riley seems to be having a continuing argument with the new Riley and no one is winning.  In brief moments of clarity, it must be extremely confusing and frustrating for him.

Riley likes Fridays too. Occasionally he will impose himself in the cleaning process and make the housekeeper’s job a bit more difficult. But, for the most part, he leaves her alone to do her job. When she’s in the middle of wiping down the countertops and Riley needs to get to his booze to make a drink, she is patient and waits for him to finish. They seem to have an understanding – they leave each other alone.

Hiring the housekeeper is one of the best things I’ve ever spent money on. She doesn’t charge me a lot – but she is worth millions. She relieves my stress and frees me so I can do other things. Now that I have her, I’m like a teenager who’s going steady. I don’t want her to ever leave me. Men may come and go, but a housekeeper should be forever.

As for the bathroom, this is part of the life of an end-stage caretaker. There’s nothing glamorous about it. It is a shitty job – literally.

Recipe for frog soup...

I’ve written a couple of posts about co-dependency: Co-dependent enabler on August. 20, 2011 and You may be co-dependent on November 20, 2010. That’s just in case you want to check them out because here comes another post about co-dependency.

While watching an episode of A&E’s Intervention, I heard this statement: “At the heart of co-dependency is chronic neglect self.” I did some research and found this statement on the website for Orange County Detox Center. You can find it here http://www.orangecountydetox.com/codependency.html.

OK. I get it. However, I have to disagree that it is the HEART of co-dependency, but rather it is a result of being co-dependent. In my opinion the true heart of being co-dependent is having a need for the alcoholic to remain an active drinker. In other words, there has to be some kind of reward in the drunkenness. That reward will often discourage the non-alcoholic from pushing or taking action to get the alcoholic sober. The reward becomes so important that the non-alcoholic loses focus on their own health or well-being that they begin to neglect themselves. In a sense, they become addicted to having an addicted partner.

I have openly stated before that I don’t buy into the entire co-dependency theory. I’m positively sure that it happens. There is no doubt in my mind about that. I just don’t believe that it is an absolute for each and every case in relationships with alcoholics.

I remember the first time I was told I was a co-dependent. I was extremely insulted. How dare this counselor tell me I actually wanted Riley to stay drunk. It was absurd. I did not need him to be drunk, nor did I find any pleasure in his drunkenness. I had nothing to gain from continued alcoholic behavior and just wanted it all to stop. With my most excellent 20/20 hindsight vision – I still do not see how I benefited from Riley being a drunk.

I think that often it is the old frog soup scenario. If you don’t know how to make frog soup, I’ll refresh your memory –

If you put a frog into a pot of boiling water, it will jump out immediately. If you put the frog in a pot of cold water and slowly bring the water to a boil – you’ll end up with frog soup.

Alcoholism is a progressive disease that can start very slowly as a little pimple on the butt of a relationship and can grow into a cavernous cancerous boil devouring any flesh that comes in contact. Caretaking is the same way. It may start with fixing a bowl of chicken-noodle soup because the alcoholic doesn’t feel well and then you find yourself cooking four-course meals every single night to keep him with you at dinnertime because it’s the only way he will talk to you. Maybe that’s not a good analogy, but it’s the best I can do at the moment.

I know that there are people who have a need to fix others. For them it may be an addiction all by itself. I believe these fixers need to focus on other people’s lives because it is too painful to focus on their own. I understand that. But, I have never ever heard a woman say “I’m going to a bar and pick up a drunk to sleep with tonight because I just love cleaning up vomit first thing in the morning.” And I’m never heard a man say, “I love having sex with a drunk because they pass out in the middle of the act.” Or how about, “I want a full house for my birthday so I’m going to invite a bunch of drunks because I know they will come if there is free booze.”

Over the years I’ve been around a lot of drunks and a lot of people married to drunks. Not even once did I ever hear anyone say that they wanted to marry a drunk. Not once did I ever hear anyone say they wouldn’t change a thing because being with a drunk is a good life. No, instead what happens is we marry the love of our life and gradually it becomes frog soup with a side of vodka. The lucky ones realize it and jump out of the pot. Others are already cooked before they even know they are in a pot.

As long as I’m on the subject, how can a person try to get a person into recovery and at the same time let the alcoholic hit bottom? Those are two opposing goals. Maybe to stop being co-dependent means walking away. I can whole heartedly support that theory. The co-dependent walks away and lets the alcoholic hit bottom.

So let’s go back to the issue of chronic neglect of self. I raise my hand high because I am totally, absolutely, with a doubt, guilty of this. I often neglect my own needs while in the process of caretaking Riley. I do it with my kids as well, but Riley is my main catalyst. Lately, it seems, I’m far deeper into the self neglect thing than I have been in a long time. I didn’t realize how bad I had gotten until I started thinking about that line in the Intervention program.

Riley’s demands have become more demanding and his insane ideas have become even more insane. I try to reason with a person who can’t be reasoned with because there is no longer a sense of logic in the alcohol infused brain. I let down my boundaries to keep peace in the house. I tolerate behavior that I would never tolerate in myself. I don’t do it because I like it. I do it because it is easier than fighting it.

The farther we go into the progression towards the end of his days, the more I seem to forget that I have a person that needs me more than Riley. I need me. In fact, I need me more than he needs me.

I don’t usually make New Year’s resolutions. I know it’s almost February, but I’m making a resolution – we can call it a New Month resolution. I resolve to take better care of me. I resolve to find my humor again. I resolve to not let Riley destroy my sanity with his insanity.

The process of my own recovery has already begun. I’ve e-mailed the AA center to try to get some members out to spend some time with Riley. (Thanks to Syd for the suggestion.) I am having my own sessions with Gill, the addition counselor. I have started a new food program and have ordered an elliptical machine. I am going back to squeezing in some time for my sewing and design projects. I am finding myself again.

Make no mistake. Finding oneself is not as easy as it sounds. But, I didn’t feel like a co-dependent before I started this re-direction and I don’t feel like one now. I DO think I was neglecting myself, but I’m not sure if it was chronic. I think maybe it was a temporary detour in the highway of my life.

Time changes us...

My older brother, Richard, and I always tolerated each other. Being the first child born to the youngest in my father’s family and the oldest in my mother’s family, he was… well… a little bit spoiled as an infant. He was the golden-haired grandchild. Until he was almost three years old, he ruled the house.

I, on the other hand, was second in the chain and by the time I arrived, my parents were far more seasoned at keeping me from being spoiled rotten. I was a delicate, tiny little girl and my father was a giant of a man and could fit me in his palm. Richard saw my arrival as a threat to his kingdom and, although he was protective of me, he was a bit stand-offish. Like – oh yeah – it’s a lttle girl – can I go outside now?

As we grew older we knew that we loved each other, but there was always a bit of distance between us. When we became young adults and he married my best friend, Carrot, we had directly opposing points of view on almost everything. After our younger brother and mother died, Richard and I made a switch in our relationship – we became extremely close. When he had leukemia, I moved into his house to help take care of him. It was no surprise to me that we discovered I was his bone marrow match. He didn’t live that long to get the transplant.

I was talking to a high school friend yesterday. He was in Richard’s graduating class and I knew they knew each other and were friendly, but I didn’t know that they were very good friends. They were both bench warmers on the football team and spent a lot of time talking while the rest of the team the kicked ass of our opponents.

What I didn’t realize was that back in high school Richard and this friend had been bullied. When I first heard of the friend being bullied I was surprised because I never really thought there was much bullying in my school. Maybe we called it something different back then, I don’t know. But, I was really shocked to find out that Richard had been bullied. In the mind of a teenage girl, I saw Richard as big and strong and taking no grief from anyone. How could I have been so wrong?

I came from a long line of teasers on my father’s side. Teasing was a way of life in our house. Kids were expected to toughen up, tease back or spend a lot of time in tears. Richard was a pro at it. But, maybe, he wasn’t teasing – maybe he was bullying me because he was bullied at school. Maybe he had no power at school – could not fight back without repercussions – so he took it out on me. That made sense to me.

The friend told me of a conversation where Richard expressed that if anyone ever hurt me, he would “go after” the person. He left the friend with the knowledge that Richard loved me very much and although we didn’t communicate very well – he would always be there for me.

After our talk, I saw Richard from a different point of view. He was a bit vulnerable and while he was protecting me, who was protecting him? It seems that as hard as high school was for me – it must have been ten times harder for him. My image of him is a little softer now.

I wonder what it was like to be Riley when he was a high schooler? I know he was very smart, but what was his social life like? Did he have a lot of friends or did he just have his brother who is only ten months younger? Did he go to parties? Was he a “square” or a popular guy? Was he bullied or teased or was he the one doing that? I’ll probably never get the answers, but it would be interesting to know.

If I had those answers, I might see Riley in a whole new light. I might understand why he dropped out of college and joined the Navy. He says it’s because the Army recruiter was at lunch and the Navy’s door was open. But that doesn’t tell me why. What caused him to go to the recruiter’s at all?

I do know that when Riley entered college, he started drinking. I also know he had a girl friend that dumped him during his first college year. I know facts related by him to me. But, I don’t know why. It seems it must have been a pivotal year in his life and I wish I knew more about it.

Riley thinks he knows everything about my childhood and high school years. It’s no wonder that he thinks that. I am, after all, mostly an open book. I freely tell people about some of my most embarrassing moments. Most of my school friends describe me as “sweet, nice, friendly”, but would they still think that if they opened my closet and some of my teenage skeletons fell out? In a way, being sweet and nice and friendly is one of the reasons there’s even a need for a closet. To rebel against the sweetness, I found things to do that weren’t so sweet – at least in my mind.

I’ve never been to a high school reunion so I haven’t had the luxury of seeing how people change after graduation. I have no before and after images. The way a person was in high school, in my mind, is what I would expect them to be now 40+ years later. A lot can happen in 40 years.

Riley’s class is planning some kind of get together to celebrate 55 years since graduation. He likes going to these reunions and I wish he could go to this one. I wish I could go with him to this one. I might learn something about who Riley was during that time.

The reality is that to take Riley to the reunion would be impossible. He could never handle the eighteen hour drive in his present condition. And since he doesn’t shower, his classmates would surely be offended by his odor. A social event such as this, I’m sad to say, is just not something he can do.

Knowledge is the key to survival. If I knew more about Riley before he was an alcoholic, maybe I would have treated him differently before he became end-stage and then never reach this point. I know the person I see today is not the one I married. It’s hard to keep my groom in my vision when he is so mean and hateful now. If I knew more about his teen years, maybe I would see a progression from a sweet boy to an angry asshole.

I don’t see how it would make any difference now. Riley is beyond the point of being able to articulate feelings from his childhood or adolescence. It is too late for him. But, still… it would be interesting to know.

Biding my time...

Thank you everyone for your concern and support. I have taken to heart all your advice and suggestions and I have come up with a plan. I also want to thank my friend, Gill, for being the cornerstone of the plan he helped me create.

Insanity is doing the same thing over and over again and expecting a different result. Using that definition, I am the one who is insane. I continue to try to get Riley to understand reason and conform to societal rules. The insanity is that I often think I’ve gotten through to him. I have not and I will not ever achieve my goal. It’s insane for me to try.

I never expect that Riley will choose sobriety. I never anticipate that he will come to me and tell me he wants to go back to rehab. On this issue, I am a realist. I don’t fight it or push for it anymore. We are way beyond that point. Riley is way beyond that point.

Riley is dangerous. He has no concern for the health or safety of anyone else. He wants what he wants and will use any means to get it. If someone gets hurt along the way, then that person should have stayed out of his way. If the person who gets hurt happens to be Riley – he doesn’t care as long as he gets what he wants at the moment. Like a toddler throwing a temper tantrum, he wants instant gratification.

Riley is a self-imposed captive in this house because his drinking prevents him from being able to be with other people. I am his keeper and because of that, I am the one he hates. He sees me as a road block to attaining the elusive instant gratification. He has no choice but to take his anger out on me and, since he is not physically abusive, he turns to passive aggression. It’s really not his fault. He’s just trying to survive in the manner that he wants.

The past three days of frustration, elevated blood pressure, headaches and tears, are my fault. His drinking is not my fault – my expectations are my fault. I was so relaxed when I came back from OBX that I forgot to regain my “Riley’s keeper” persona before I entered the house. I was not objective and forgot about the past repeating itself. I let my guard down. I allowed myself to argue with a man who no longer has any logical reasoning ability. It’s like me trying to convince my potted mums not to go dormant for the winter. Those mums are on auto-pilot. No matter what I say, they will be ugly until spring.

In the past, Riley has always just let me do the things that needed to be done because he knew I was “taking care” of him. He was always a little paranoid, but for the most part, I can just tell him I’m doing something and he has been OK with that. But, things have changed. I believe his brain is so damaged that he now sees me as a threat. He is conflicted. He wants to get away from me because I’m not letting him do what he wants, but he also wants to stay because he knows I’ll keep him safe. It is a true contradiction and if I were Riley, I’d probably be expressing mercurial emotions just as he is doing.

Don’t misinterpret my post as feeling sorry for him. There is none of that here. He created his own mess and now he has to deal with the consequences. He has been vocal to everyone about his intentions to drive while drunk and also to do whatever he pleases in spite of the laws or rules. He isn’t to be pitied and I have very little compassion for his situation. And that situation is going to get a lot worse for him.

When I called Gill, I just wanted to come by his office and drop off a copy of the new workbook. But, I also asked if there was any way he could help me with getting Riley’s driver’s license revoked. Gill is an addiction counselor who works for the State of North Carolina. He evaluates drunk drivers and offers a treatment plan. He also conducts classes and groups in his office. Both Riley and I have known him for more than 30 years.

During our phone call, I told Gill that I needed to find a way to keep Riley from driving, even though I was taking him to DMV to get his car registered. I told him I was considering filing an order of incompetency. When he offered to help make that happen, my energy was renewed with the knowledge that I now had an ally.

He told me to call the last hospital where Riley was a patient and have them fax over whatever was in the medical records. Then, he would have a meeting with Riley and ask him some questions to determine where he stands on the issue of sobriety as well as the level of his drunkenness. We would gather the information and put it into a court-friendly format. It will take some time (maybe a couple of weeks) to gather all the info and create a concise evaluation. But, it will be worth it.

Right now, I’m just a wife making accusations. With Gill at my side I am a woman who has explored the options and done her due-diligence. My opinions become facts. I have validation.

After getting the car taken care of, we went to Gill’s office. It wasn’t like a regular counseling session. It was less formal. Riley didn’t understand that he was being evaluated. Riley was just having a conversation with an old friend. I was in and out of the office and, for the most part, I kept my mouth shut. Gill had Riley blow into the breathalyzer and he blew a .18 – twice the legal limit.

A couple of hours went by when Riley became fidgety because he had not had a drink in several hours. He was more agitated and confrontational. It was time to end things for the day. But, Gill asked Riley to come back on Monday when they could have some one-on-one time with me out of the room. Riley agreed. In the back of my mind I was thinking on Monday I could file the incompetency papers and have my nails done or just sit in the little bookstore/coffee shop. I could do something without worrying about what Riley was doing. That was a huge relief.

Things were quieter in my house last night. I won’t say peaceful – just quieter. I feel less chaotic, more focused and less likely to expect anything from Riley except illogical, disjointed reasoning and thoughts. I will do my best to try to find some humor in his contradictions. I will agree with whatever he says because to do anything else will just wind up the Merry-Go-Round. Just because I am agreeable doesn’t mean I’m going to act on anything he says. I’m just buying time, buying a peaceful household until Monday.