Slip but don't fall...

I was told that a friend’s husband recently returned to drinking after a year of sobriety. My friend was a bit miffed at me because I didn’t seem surprised. In fact, I said that it was predictable. This is a case of me speaking without thinking. I should have consoled her and supported her, but instead I just spouted out the facts. When a woman is distraught, she seldom wants to be slapped in the face with something as useless as “facts.” I took a mental step back and put my logical mind on hold. I hugged her and told her I was sorry that her husband was being a jerk. That was what she needed and that was what I provided after realizing that I was also being a jerk.

However, facts are facts. This had been her husband’s first time through rehab and it is quite common for first-timers to “test the water” – so to speak. They may not be totally convinced that they are alcoholics so they have a glass of wine with dinner or a beer with the pizza. Most times those seemingly innocent slips turn into another descent toward the bottom. Sometimes they are able to stop and realize what they are doing is destructive and other times it just gets increasingly worse.

For the family and friends there is a process of discovery and acceptance of the relapse. When an alcoholic goes through rehab, the family is elated with the possibilities of returning to a normal, sober life. They envision rekindling of relationships, professional success, and the ability to have everyone seated around the dinner table for a meal. It’s almost like a honeymoon with all the expectations of a wonderful life ahead.

It’s because of this “honeymoon” that we don’t want to believe that the alcoholic has returned to drinking. We don’t trust our instincts because we want more than anything to be wrong. Our instincts tell us something is wrong. We see the signs, but close our eyes. We are afraid to confront the alcoholic with our suspicions because we don’t want to upset them and make them so angry that they stomp off to the nearest liquor store. In our minds we think that if we accuse the alcoholic of drinking and they are not that they are so fragile, they just might start drinking.

This is where things get a bit insane. We need proof. They only way to confront the alcoholic is to have solid irrefutable evidence that the alcoholic has in fact returned to drinking. We search the house, car, yard, or anywhere else that might contain a hidden bottle of booze. We check the bank account for liquor store activity. We might even follow them or set up baby cams. We begin to obsess over where they are and what they are doing. Then when we confront the alcoholic they might just point to the recent activity and ask – who’s the crazy one?

Most often our instincts are correct. It’s that feeling in our guts that tell us the truth. A spouse just “knows” when their mate is cheating. In the case of an alcoholic the booze is what they are cheating with and just like an affair – we know. Proof is good to have, but we wouldn’t be looking for proof if we didn’t already know.

 Unfortunately, most alcoholics are hesitant to freely admit they have returned to drinking. They give excuses and tell the family that they are wrong. They think they are smarter than everyone else and no one will know what they are doing. So they make it difficult for us to help them find their way back before they are in so deep that they cannot get out. It’s a sad situation.

The one thing that must be remembered is that it is very common for alcoholics to relapse. The relapse in and of itself is not the big issue. What is important is what happens afterwards. If the alcoholic is able to see it as a relapse and not an end, they may be able to get back into the sobriety arena. Sometimes a slip is just a slip and with a little stop and rebalance, they can get stay on the road that leads to a healthy life.

Families and friends have slips also. They have a slip back to the insanity of micro-observing everything the alcoholic does. In their valiant attempts to keep things going in the right direction, they get off their own path to sanity. In their search for “proof” they may do things they wouldn’t think of doing otherwise. At these times we must remember a slip is just a slip and not an end. The sooner we regain our balance, the more likely our lives will be less insane.

In the case of my friend’s husband, she was able to stop the search for proof by getting her husband into a situation where he was unable to run from the conversation. She then told him that she knew he had been drinking and that she wanted to help him over this bump in his sobriety road. Of course, he resisted and insisted that she was wrong. He wanted to know what proof she had. She calmly told him she didn’t need proof because she had her instincts to tell her that the man she loved was heading for trouble. She told him that he was the love of her life and she knew him better than anyone else and knew when things were “off.” And things were not right. She also told him that slips and relapses were common in the early years of sobriety and that she would provide him whatever support he needed to make sure would be able to enjoy their life together. She told him that if he decided not to get help and return to sobriety, she would leave him because, although he is the love of her life, alcohol took that person away and she didn’t want to live with the drunk.

He did not stop drinking. Within a month, my friend packed up her things and moved out. She left him in his drunkenness and set up housekeeping elsewhere. Only a few weeks after that, he went back into rehab and has been clean and sober for about a year. My friend has not returned to the family home yet. The couple are talking and “courting” and enjoying their time together.

This couple’s story may have a fairy-tale ending. Or not. Only time will tell.

In my opinion, my friend did the right thing. She confronted, offered help and ended with a consequence which she put into action. She presented herself in a sane manner and showed strength in not letting him turn the conversation into ranting and arguing. Inside she may have been a quivering mess of Jello, but outside she was strong and determined. She was able to maintain her sanity.

It sounds so very easy. Trust me – it is anything but easy. It’s never easy to confront an alcoholic or to leave your soul-mate. For most spouses of alcoholics, my friend’s scenario would not go down as it did for her. When dealing with alcoholism we must always expect the unexpected and be prepared for unpredictability.

They are just children...

It’s an adjustment really. I haven’t lived with small children for many years. I haven’t worried about baby-proofing, potty-training and/or snacks before dinner. This has been a wakeup call.

Before I moved into this house, Nicole would call me and have only one nerve left which one of the children was always standing on. I wanted so much to be able to help her get some rest and take the kids off her hands even if just for a few minutes. I thought it would be a simple thing to just play with them while their parents took a nap. They are children – how hard could it be?

Six and two year olds have minds of their own. They may not want to play the same game you want to play. The TV may be turned on to cartoons, but that doesn’t mean they will sit like zombies and become enthralled in the program. They are, in fact, little people who have their own wants and desires. My great-grandchildren are independent little souls who march to the beat of their own drummer. When the heck did that happen?

When my children were their age, I don’t remember them being so set in their ways. I imagine that sixty years of hindsight has probably changed my personal vision of reality. I do remember being frustrated and wanting to lock them in their rooms until they were adults. As they became teenagers, I wanted to locked them in their room and just throw away the key. But, I didn’t and – lo and behold – they eventually became responsible adults. Who’d a thunk it?

Emily and Brian, my great-grands, have places to go during the day. Brian goes to DayCare and Emily usually goes to Nana’s. When school starts next week, Emily will be spending her days at school until her mother picks her up. I don’t really have them during the day and for that I’m, surprisingly, happy. That’s OK because Barkly, the dog, makes up for lack of chaos.

My day usually starts at 5:30 a.m. pouring coffee for Riley, Ryan, Nicole and me. That’s about a whole pot, so with the last cup I make a fresh pot. Then I help Nicole find shoes and other things needed to get them out the door. They all leave at once. Now it’s just me and Riley. I find something for his breakfast. Sometimes it’s as simple as cereal and other times it’s bacon and eggs or waffles. He is now situated and I can go on to other things. I straighten up the living and dining rooms, gather up the laundry and start a load of wash. Next it’s doing the dishes and coming up with a plan for dinner.

I take little breaks between the tasks, but getting comfortable on the sofa is difficult because Barkley must be next to me at all times. Getting comfortable with a 55 pound dog laying on me, is not easy. Barkley is a blue-nosed pit bull that Ryan got long before he should have been taken from his mother. Ryan bottle-fed him and is afraid of his own shadow. He must have a trusted human around him, or he cries – no, he doesn’t bark or howl, he cries like an infant. He simpers and you can see in his eyes that he just wants someone to tell him he’s going to be OK. I’ve never liked pit-bulls, but this one is different than any other I’ve ever seen. Ryan and Nicole are very careful about Barkley being with the children. Barkley is never left alone with them and the children have learned not to lunge for the dog. They have been taught that Barkley needs gentleness and that’s exactly how both kids and dog behave. I’ve been extremely impressed even though Barkley’s constant following me and sitting with me is a pain in the neck.

Dinner is planned and probably started and a load or two of laundry is complete. I’ve been checking on Riley throughout the morning and if he’s had an accident in the bathroom, I must go clean that up. It’s time for lunch which may be leftovers or a sandwich or soup. I go down the hall, for the millionith time, to take him his tray. If I am lucky, he will finish before Young and Restless comes on so I can lay on Emily’s bed with Barkley gated from entry and settle in for one and a half hours of rest and enjoyment. Sometimes I fall asleep, but most days I do not. Riley always naps during this time and it’s a relief to know I don’t have to make another trip down the hall for a while.

After my respite, I continue with my dinner plans, fold the laundry and put it away, and clean up in mine and Riley’s room. Now I have a couple of hours before everyone gets home from work, school, etc. I can get on the computer and see what’s going on. I check on OARS, the blog, comments, bank account, Facebook, etc., etc. If I have time I’ll write a post.

Everyone piles in the door at the same time. The toys I put away this morning are instantly scattered back throughout the living and dining areas. Both kids want a juice box or a snack or something to digest. When I first got here, I was freely giving the kids anything they wanted. But, their parents reminded me that if they get lots of sugar before dinner, they will not eat. I’m not as quick to oblige them anymore.

My great-grands are the most talkative children I’ve ever seen. It seems they do not know how to stop. They use their indoor voice, but it’s like a bunch of magpies at a convention. I try to pay attention, but they often loose me in translation. Somehow, their parents are able to sort through it and know what is important from what is just chatter. I’m amazed at their ability. I remember trying to explain to my daughter that everything she thinks doesn’t need to be vocalized – but I wasn’t successful. She’s now an adult and has out-grown her need for vocalization.

We have dinner and then Ryan takes charge of their baths. In between we keep expressing to Brian that big boys potty in the toilet, but he insists he doesn’t want to. It is frustrating because he will tell us that he is busy pooping, but when we tell him he needs to go poop in the toilet he becomes quite adamant that the toilet is not his preferred repository for bodily functions. We agree that we don’t want to use the toilet as a punishment. We are patient. All things in due time.

There are no set bedtimes. It really isn’t necessary. Emily will just quietly disappear into her bed. Brian gets extremely hyper as he gets more tired. He plays “red light, green light” which involves him running in circles and suddenly starting and stopping. After a couple of runs around the room, he crawls into his mother’s lap and falls sound asleep.

It’s quiet in the house now. Nicole and I can now spend a few minutes talking about the day, house-hunting, budgeting, meals, plans and other things. I’m exhausted. I need sleep. I climb into my bed and listen to Riley. He’s now sleeping on his side rather than his back and the apnea seems to have subsided. He talks in his sleep. Eventually I fall into a welcomed slumber. My mind and body prepare for the next day.

We are looking for a house where Riley and I are more separated from Ryan and Nicole’s family. We want to be in the same house, but not in exactly the same space. It will happen, but we must be patient (OH! There’s that word again!). The right place will come along. In the meantime, we’ll just keep doing what we are doing. It seems to be working so far.

To My Commentors - 8/26/2012

Since I started reviewing the comments, I’ve only had to delete one – which was not related to my blog. It was basically an advertisement. Thank you all for being so understanding.

I want to remind you that a proactive site exists for communicating with others involved with caretaking or just loving an alcoholic. We have about 70 members now and are still growing. OARS F&F Group is a private Facebook page. Only members can see who participates and what they say. There is almost always someone available on the site 24 hours a day. The only rule is to not judge or criticize. Our topics are so varied – sometimes we are crying and other times we are laughing. There is a bond among the members that I’ve never seen in an Al-Anon meeting. I’m not knocking Al-Anon, it’s a fabulous support group, but I just feel that OARS goes that one step beyond.

An independent website is being developed for the OARS group and it will work similar to Facebook. It will include a forum and live chat – although Facebook works just as instantly. I have issues with Facebook and not everyone has access to it, so a separation is imminent.

To access the Facebook OARS – if you have an FB account, simply search for OARS F&F Group and request permission to join. Access is granted usually in less than a couple of hours. If you don’t have a FB account or you want to double your anonymity – create an email address (gmail or Hotmail) using a nickname. Then join FB using the nickname and request permission to join. Several people on the site do this and only use that nickname for the OARS site. It is free and is available internationally.

Anonymous 17 year old with a baby – PLEASE consider joining the OARS group. You have already experienced a lot in your early years. I know how painful it must be to watch your father destroy his life. Fathers are very important in the life of a young girl. They should protect and provide an example of the kind of man she would want to share her life with. I don’t know if you are with your baby’s father, but try to use your father’s example as one NOT to follow. However hurtful you’ve had a wonderful learning experience as to what you DO NOT want. I wish for you courage and strength as you tend to your father.

Msterfun – I agree with you – but it appears Riley is not dying. Of course, I won’t really know that until I can get him in to see the primary care doc (earliest appt was in Oct.). But, for now, I must assume he is simply physically ill and not dying. He is a handful to tend to even in sobriety. My main consideration at the moment is that we live with my grandson’s family. There are two very young children in this extremely small space. I CANNOT and WILL NOT expose the children to Riley’s insane drunken behavior. For now, at least, Riley is alcohol free and will stay that way for as long as I can manage it.

Jo – I just now this very minute accidently deleted one of your comments. I’ll try to replace it later today. I’m very sorry. It was not intentional. My cursor was in the wrong place when I clicked. That’s what I get for having both things open at once.

Syd – Riley has said he would like another letter and now that he’s a bit better he will try to write back. I’ll send the new address in a separate e-mail. Thank you very much.

No more comment drama...

I’m pretty thick-skinned. I do pretty well with criticism and welcome opposing points of view. After all, we are all different and no one person thinks or believes or agrees with every other person on this planet. What a boring place this would be if we all thought alike. So I’ve always welcomed comments that didn’t agree with me. They are helpful to me to be objective and re-evaluate my own perspective.

My readers have always been had the privilege of posting uncensored comments. I haven’t reviewed them before they post. I have let everyone speak their own mind no matter how they expressed their opinion. I have deleted only two comments in the past two years and they were ones that had nothing to do with the blog or content – they were just filled with pornography.

I have always felt that everyone has a point of view that deserves to be heard. I am a strong woman and (for the most part) can take whatever is dished out. Yesterday I met with a social worker from the Veterans Administration who pointed out that disrespectful comments made on this blog can hurt people other than me.  I have a lot of readers who relate to what I write as a story of their own life. They see themselves in my experiences. When someone posts a hateful comment, it is not just hateful towards me, it is also hateful towards those readers who have made similar choices. It’s not just about ME anymore.

There is also the issue of the rudeness upsetting my family. They take the commenters words personally and want to protect me. I’ve asked them not to respond to the hurtful things people post, but the comments have become so upsetting, that my grandson’s wife, could not help but lash back (grandaughter).

It is a shame when the actions of a few result in innocent people having to pay the consequences. Unfortunately, this has become the case. For now on, I will review every comment before it is posted. I will not post comments that are venomous, mean, rude or hateful. It is cowardly is hide behind anonymity in order to hurt others. Simply put – if you don’t like me, don’t read my blog. I invite you to NOT be involved in anything I do.

I still welcome opposing points of view. I will not edit the comments. Everyone has a right to be heard, as long as everyone is respectful of everyone else. Anonymous comments will still be accepted as long as they are of a constructive nature. I especially like comments that provide positive suggestions and/or links to other sites with helpful information.

Thank you very much for being my readers. I appreciate every one of you. I hope you will continue reading even though there might not be so much “comment drama”.

Nightmare move...

Leaving the big country house was an exercise that could have been portrayed in a Stephen King movie. It was a nightmare. All of my careful planning and organization, hiring of the handyman and housecleaner, and hiring a professional moving company turned out to be a comedy of errors. The plan was all about timing. I packed everything I could and then the movers were to pack what was left. As they emptied each room, the housecleaner, handyman and I would clean and make any repairs. I had separated certain boxes and a suitcase for the movers to take to my grandson’s house rather than go to storage. The “storage room” stuff was totally separate from the “grandson house” stuff. The boxes were clearly marked with red tape. I needed the movers to take them because my van was totally packed.

But, the timing was thrown off when the movers called to tell me they could not get to my house until 3:00 p.m. I thought – well OK – it shouldn’t take more than a couple of hours for the truck to load and we’d be completely done by 7 p.m. It was not the best scenario because it meant the cleaners and handyman would have to come back the next day to finish the job. But I needed to move forward.

To make a long story short – the moved was complete at 4:45 a.m. the NEXT morning. To top it all off, my careful separation of storage and house stuff was totally lost. Everything was simply thrown haphazardly into the storage room. By this time I had been awake for more than 30 hours and was not up to arguing or fussing with the rude workers. I just wanted it to be over.

I picked up Riley at the nursing home the following day and took him to our new temporary home – my grandson’s house. Riley and I are now sharing the master bedroom. It is an uncomfortable situation, but it is only temporary. I can handle this.

I had been given specific directions from the nursing home about how to take care of Riley. He was not to be left alone for any small amount of time. He needed his meals at regular times. Bathe him daily but he was not to get into the shower. Do not allow him to try to walk – he was to either be in bed or in his wheelchair. I wasn’t sure how I was going to meet all the requirements. My grandson’s wife had been searching for a personal aide for him, but had not had much luck.

The first 24 hours were very unpleasant to say the least.  By the end of the day I decided that I would try to help him regain some ability to walk. He had had NO physical therapy at the nursing home and I thought maybe with a little exercise and practice, he might be able to become at least a little more mobile. I was right. He can now get to the bathroom and he has discovered that he can make it to the toilet in time which means I don’t have to change messy diapers. He still wears the pull-ups in case of an accident – but for the most part he takes care of that by himself. This takes a HUGE load off my shoulders.

Riley has not expressed any interest in leaving the bedroom. He watches his TV, eats and sleeps. That’s his day in a nutshell. When everyone is home, the rest of the small house gets chaotic and he cannot handle the noise and confusion.

On the way home from the nursing home, Riley told me he couldn’t wait for a sandwich and a beer. I told him I was happy to make him a sandwich, but that there would be NO beer – or any other alcohol for that matter. As long as we are living with the kids, he would be alcohol-free. And – since we are looking for a larger house to share with the kids on a permanent basis – he better get used to the idea of not being drunk. He did not argue and has not asked for anything to drink since.

Over the past couple of weeks, I’ve had to leave him alone for short periods of time. When I returned everything was fine. I did not find him on the floor or stressed or drunk. So it seems, I am able to do things like grocery shopping or running some errands. I’m never gone for more than two hours – but it is a welcome time away from the house.

Sleep is a different story. Riley doesn’t sleep well through the entire night. I hear him gasping for a breath of air. I suspect he has some sleep apnea – which I will address with his primary care physician. I wake up each time I hear him make a noise that doesn’t sound “right”. As a result, I never get a full eight hours of sleep.

I keep a small supply of my own medication at my grandson’s in case I get stranded here and can’t get to my regular supply. I had been using my emergency supply because my suitcase containing my prescriptions ended up somewhere in the storage room. I thought that I could get my grandson to get them out and that it would not be a problem. However, when the boys went to the storage room, they had difficulty even getting into the shed to find anything. They did the best they could to move boxes around and still – there was no suitcase.

Because I couldn’t find my medication, I started making phone calls to the doctors who had prescribed them. I got nowhere. I left messages. I talked to the nurses. I was told that I had just had my meds refilled and if I wanted another prescription, I needed to make an appointment to see the doctor. I didn’t want to drive two hours to a doctor that I didn’t like when I knew those meds were in that storage room. But, basically, I was without my meds for the better part of two weeks.

I made an appointment with a primary care doctor here in the new location. I thought, I’d just start over with a new doctor. I explained my situation and the new doctor was happy to see me to get a prescription for my meds and then give me a physical later on in the month. This was good. I felt I had found a solution. I was exhausted and feeling generally yukky, but this would all be resolved.

Like any new patient, I expected the appointment to be lengthy. What I did not expect was the medical assistant coming in looking at me with concern and asking if I felt OK. She didn’t wait for an answer, but took my vitals and said she’d be right back. When she returned with the physician assistant, we talked a bit and then I was told they had called an ambulance to transport me to the hospital. I was confused and found that I was having difficulty answering the questions. Why was I going to the hospital? I just needed my prescriptions refilled. I couldn’t be gone that long from Riley.

The next thing I knew I was in the ambulance with a couple of EMT’s named Bruce and Eric. Bruce was talking softly to me and asking me questions. I didn’t feel like I could answer him. He told me not to worry they would take good care of me. I tried to tell him that people don’t “take care of me” – I take care of them. But we were now moving on down the road to the hospital.

When we were finally in the emergency room, my daughter came over. She told me that my blood pressure was extremely high and the doctor suspected that I was going to have (or having) a stroke. I remember hearing the numbers 200 and something over 100 and something. I repeated that I just wanted my prescriptions refilled. A doctor came over and asked some questions. My daughter talked to her because now I was so distraught that nothing was coming out of my mouth that made any sense.

I was given some medication and almost immediately I felt more relaxed. I was whisked off to getting a cat scan. By the time I returned to the room, I was dozing in and out. I was tired and just wanted to get to sleep.

The scan showed that there was no NEW damage. I got enough medication for two weeks and was sent home. I was told to make sure I took ALL my medication everyday as prescribed. I was instructed to get plenty of rest and make sure I avoided stress. If I do that, I should be fine.

My search for a personal aide for Riley continues.

Tell me how you really feel...

I’m excited an honored to find out that I’ve been recognized for excellence due to the contribution of excellent editorial work in the world of alcoholic addition. You can view the details here:

http://www.kwikmed.org/20-exceptional-alcohol-addiction-resources/

The site lists the “Top 20 Truly Exceptional Alcohol Addiction Resources”. Each of the 20 blogs have been reviewed on this site. It seems my site is a bit “old fashioned without many images”.  Maybe it's time for a re-vamp.

Now for today’s post:

Riley will be released from the nursing home on Friday. The nursing home has said they will help me get him into the van. I’m picking him up late in the afternoon so my grandson will be home by the time I return. He can help me get him up the flight of stairs that leads to the front door. His bed will be ready and waiting for him.

That will be a turning point in my life. Until I find a personal aide that I can afford, I will be at Riley’s beck and call 24 hours a day. I will begin my caretaker role in a whole new direction. While I’m not looking forward to it – I accept the inevitability of it. It is what it is and fighting it only makes me cranky. Crankiness is not something I want to display to my great-grandchildren who (in my mind) will be the one thing that makes giving up this country house worthwhile.

Riley is a handful. Even his nursing home nurses tell me that he is difficult because he refuses to cooperate and doesn’t understand his own limitations. His brain function doesn’t allow him to remember that he can’t walk to the bathroom. He has always been passive aggressive, so now it manifests itself in ways that cause his nurses to come running when he thinks he hasn’t had enough attention. He now lacks the ability to form reasonable logical conclusions or conversation. He truly doesn’t understand why he can’t go home to his very own place and continue living his life on his own.

I’m asked how I feel about that. How do I feel that he is a child in an adult’s body and I must tend to him? My answer is … well… how do you think I feel? Riley has so destroyed his own mind and body that he can no longer function even though he is sober. He has done this to himself. I want to feel some kind of empathy for him, but I do not. I want to be able to say – oh! He can’t help how he is. But, the truth is he COULD have prevented this and his choice was to stay on the insanity path and destroy everyone in the vicinity. So I feel angry with him for making those choices. I feel sadness that such an intelligent man was so stupid to not accept the opportunities that have been presented to him so many times. I’m hurt that he didn’t care about the outcome for the rest of the family. That’s how I feel.

But, how I feel really doesn’t matter. I never thought things would go this direction when I first took him back in. I wasn’t seeing the situation clearly when I made that decision. I would have still prevented my daughter from taking him into her home – but I might have searched for an option other than the one I choose. And there you have it – I CHOOSE to take him it. It was MY decision and now I must come to terms with the fact that I may have made the wrong choice. It’s just the same as Riley making a wrong choice. I’m really no different. The choice was made and now I must deal with it. Since Riley cannot be an adult, I must handle both of our choices in an adult manner for both of us.

The hospice care doctor says Riley LOOKS physically better, so he is better and is no longer dying. The doc says he sees “no decline” in his condition. I don’t agree. I see decline every time I go see him. No lab tests have been taken and as long as he is in the nursing home, none will be done. However, the doc was quick to tell me that I must be the “gatekeeper to the liquor cabinet.”  He tells me Riley has very little liver function and ANY alcohol at all could be a fatal drink. I explain that it isn’t just the liquor cabinet that Riley is interested in because he will drink anything he can get his hands on. The doctor says I must watch him 24/7 because his fate is in my hands. Isn’t that just peachy? It seems that now my entire role in life is to keep Riley alive by not allowing him what he wants as he proceeds to death’s door.

My uncle had emphysema. He had this portable oxygen tank that he pulled around with him. He smoked constantly even with the oxygen tank close by. I went to visit him as he was dying in his bed at home. His days were extremely short and I remember feeling so sad for the loss I was about to endure. He was always happy to see me. When I walked into the room he gave me a wide grin and said “Hey… honey… tell me like it is.” He was talking about what was going on in my life and not about his illness. As we talked, he asked me to hand him his cigarettes. I said no – he knew he wasn’t supposed to be smoking. His response was he was dying anyway, so what did it matter? I knew he was past the point of being saved and he was 93 years old. But I didn’t give him that cigarette. He died a few days later while smoking his last cigarette. In hindsight, I think I should not have denied his last bit of pleasure when he was so near the end of his life. Heck, I should have gotten him a top notch cigar.

When I was asked if I would give Riley alcohol when he returned home, I thought of my 93 year old uncle and his desire for that cigarette. At this point, before I’m actually faced with the decision, I’d have to say I will not serve Riley alcohol just like I didn’t get that cigarette. But, and this is a big BUT, if Riley expresses his anger in ways that makes him impossible for me to handle, I might just give him that drink. Of course, it won’t be enough for him and my fear is if I give an inch he will pressure me to make it a mile. So, I guess my answer is – I don’t know.

I’ve been a caretaker before so I know how difficult it will be. Every time in the past, I had a lot of support and relief. I was not in it alone. This time, it’s just me. Unless I can find a personal care aid who will work for homemade peanut butter cookies – it’s all on my shoulders. It’s OK. My shoulders may not be wide, but they are strong. Psychologically I’m stronger than Riley. I can do this and I will do it to the best of my ability. After all, I’ve always been an over-achiever.

Somewhere in the back of my mind, I think – it’s too bad that the functional alcoholics who read my blog can’t come and sit with Riley for 48 hours. Let each of them take care of him for just a weekend. This would show them what their lives might be like if they continue to drink themselves into oblivion. Maybe instead of picking up trash alongside the road, the legal system could use caretaking Riley as a form of community service. If they saw what the future could hold -- maybe – just maybe – their choice would switch from insanity to sobriety. Maybe they would choose not to be a child in the body of a 70 year old.

Change of scenery...

I’m in a pretty good mood in spite of all the frustration and drama of the past few weeks. I’m focused on moving forward and doing what must be done. I’ve accepted what’s coming and that has provided me with some sense of relief. I thought about writing about yesterday’s frustrations and the unprofessionalism of people who, in my opinion, should have the upmost in professionality. But my mind is going in a different direction and sometimes --- well --- you just have to let it wander.

Although I’ll soon be living just blocks from the Atlantic Ocean, I’m really not much of a beach person. I love the mountains with all the tall trees and clean air. I love the sounds of solitude and the sight of the sun setting behind the treetops. That’s where I am most able to recharge, regroup, and redefine my whole being. Autumn in the mountains is my favorite time of year. Sipping on hot coffee on a frosty morning and sitting by the fireplace in the evenings while reading a good – that’s my idea of heaven.

Years before moving to the Carolinas, while we were still in California, I found an ad for some land in the Klamath Mountains in Oregon. On a whim, Alea and I decided to take a road trip and check out the parcels that were available. It wasn’t so much that I wanted to buy, but rather, I just wanted to look. Road trips with Alea are always fun and I love our bonding time together.

As we made our way up Interstate 5 we passed through the town of Weed and saw an old-fashioned motor lodge where each room was an individual cottage with a carport type garage attached. We could image a Model T Ford in the carport and the travelers settling down for a night of rest. Back in the day it would be a very long drive between rest areas.

Once passed Weed, we diverted our to route to Highway 97. It can be quite boring. No tourist towns. No Stulkey’s fudge ads. Just small town communities in between lots of farm land. Utility poles lined one side of the road for a while and then switched over to the other side after many miles. There were farm houses off in the distance. At one point trees seem almost non-existent – except for some that were part of the yards of the farmhouses.

We had each been quiet for a time with each of us in our own thoughts. Then Alea asked “Do you think the number of trees in the yards is an indicator of how wealthy or the class level of the owners?” I turned my head and stared at her. I wasn’t sure if she was kidding or if she meant it to be a serious question. There was no hint of amusement in her face. I couldn’t help it. I wanted to answer her seriously but instead I burst out in laughter leading to tears streaming down my face. What on earth was she thinking??? So I said (or I tried to say thru my giggling) “Maybe when the income taxes returns are filed, their income is evaluated and then IRS gives them a tree if they made more than last year.”  Both of us were laughing uncontrollably by this time. “OH!! LOOK!! They must be having very good years!!”

Now that we were started on poking fun at our surrounding and finding humor from simple things we were on a roll. We saw signs along the highway that informed us we were in a “Deer Crossing” zone. We wondered if the deer knew they were to cross there at that very location rather than crossing farther down where there was no crossing zone sign. We came up with many different scenarios of how the deer could be informed of their crossing restrictions and what the punishment would be if they didn’t abide by those rules. It was as ridiculous as some Dr. Seuss books. We didn’t care we were thoroughly enjoying our absurdness.

In some places the utility poles seemed to be shorter than others. There would be miles of short poles and then miles of taller poles. We couldn’t figure out why that would be. We tried to come up with all the rational practical reasons, but none of them were working for us. We surmised that the work crew for the shorter poles must have had shorter construction workers and that the poles seemed high enough to them. The taller poles were constructed on days when the crew contained taller workers. It made sense to us at the time.

By the time we reached Klamath Falls, we were exhausted from the long trip and our sides ached from all the laughing. We found a room and slept in the next morning. Then it was off to view all the parcels of land that we had researched previously. It was so reasonably priced that it was almost scary. But people had already been buying up the land and were actually settling into their surroundings. Maybe it was not such a far-fetched idea of latching onto a piece of land for ourselves.

On Sunday we spent the day checking out the town and exploring the area. It was a layed-back kinda place with lots of little interesting gift shops. I could almost see myself living here. Of course, there was not much work here for an executive assistant or real estate title examiner. I would have to take a substantial cut in pay and I doubted that would be something I was interested in doing. I had never really intended for this to lead to the possibly of me leaving my current job and moving to Oregon. This was just a fact finding mission mixed with a mini-vacation from home.

The drive home was filled with talk of family matters and things of a more practical nature. We agreed Klamath Falls was a nice place to visit, but probably not a place to live. However, buying a parcel of land and using it as a “vacation” retreat was not a bad idea. If only there was a more accessible route rather than Highway 97.

Pulling into my driveway, I felt tired but refreshed. I returned to the reality of the here and now. I checked in on my brother (who was dying from leukemia) and thanked the family friend for taking time from her job to stay with him while I was gone. The respite had been good. It was what I had needed.

Maybe as I begin a new phase as caretaker for Riley, there will be a mini-vacation respite with one of the kids that will give me memories as wonderful as the ones I gained from Klamath Falls.

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Old fashioned marriage...

I’m old school. I freely and openly admit that I was raised in an era when things are now looked upon as “out of date.” I’m not alone. I’m a baby-boomer and, last I heard, we make up the majority of the senior citizen pool. I’m just freakin’ fine with that. I’m proud to be from the time warp where family was everything and a person’s handshake was as good a signature. I drank from the water hose and rode my bike without a helmet. Those were the days my friend.

Riley is nine years older than me. But, I know his childhood was, generally, much the same as mine when it came to how things were back in the day. We were raised with a certain mind-set, a certain set of beliefs and the knowledge that if we worked hard and paid our dues – in the long run – we would reap the reward of the golden years. We didn’t know that the “Golden Years” are not for sissy’s.

Both, Riley and I, were sixteen years old when we got our first bonafide job. We started paying income taxes and into our Social Security plan and we were proud to do it. We believed this was in our best interest as well as our country’s. Riley is now 73 and I’m 64. We’ve been paying into Social Security for the better part of 50 years. If we added up all the money we have paid into the program, I would imagine it would be a sizable amount even though we were always a middle-income couple.

When I found out that Medicare – part of our Social Security program – wasn’t going to pay for Riley’s nursing home, I was a bit taken aback. How could we be paying into something for so long not help us at a time when it was most needed?

The truth is… I’m not alone in the belief that Medicare will take care of us. When I met with the social worked at the Veteran’s Administration, she explained that many people are under the false impression that Medicare will pick up the slack. Yes. Medicare will pick up certain expenses, but the reality is they will not pay for any type of custodial care. She explained further that when reality hits, it creates a form of culture shock. People in my age bracket have worked most of their lives and enjoyed the fruits of their labor – such as health insurance. When they retire, the company provided health insurance goes away or becomes too expensive to continue. They are left with Medicare which covers many things and is a Godsend when illness takes over. But, it leaves a lot uncovered and the quality of care often goes down considerably.

Riley and I have always been well-insured between his military medical and my private health insurance; we had our choice of the best doctors and hospitals. You would think when Medicare got added to the mix, we would be even better off. When I was forced into retirement, I could not pay for the private health insurance. Somehow I had the mindset that we would be OK because we had both military and Medicare. But it was simply just a false sense of security. When it was explained to me, I thought – OK that was a kick in the reality pants. What’s next?

I never in my life thought I would be applying for Medicaid. In the past we had enough money to take care of ourselves and I would never imagine that I’d be faced with asking my government for money to help support me. This feels like Welfare and I’m just not a Welfare person. BUT WAIT!!! As the social worker so aptly put it – have I not been paying taxes for about 50 years? Have I not paid into the system? The answer was YES – I (we) had been paying and paying into the system for the majority of our lives. It’s not “Welfare”. It’s a benefit from living in this country and paying my dues. I’m not asking the taxpayers to foot my bill – I am asking for the use of the money I have contributed. I know there was no “Medicaid” account deduction on my paycheck, but isn’t it implied? I had before never seen it from that point of view.

I really don’t want Medicaid to pay for Riley’s nursing home expenses. I’d rather get the assistance in the form of an allowance for a personal care attendant for Riley. That seems reasonable to me. It’s the only way I can save my sanity and still tend to Riley’s care.

As far as Medicaid taking all of Riley’s income to pay for a nursing home, that doesn’t seem unreasonable to a certain degree. If I could maintain a portion of his income and give the rest to the nursing home, I might be able to get my mind around it. But, that leads to a whole other issue that also seems to be “old school.”

Back in my day when a couple married – they truly married. Their lives became one just as their assets and debts were combined. Both paychecks went into one bank account and the bills were paid without regard as to which of the couple initiated the expense. The house payment was not divided into his and hers. The car payments were not split by the one who drove the car the most often. Everything was shared – money, cars, house, children, mothers, fathers… everything became the property of the couple who were now ONE entity.

I sometimes hear my niece say that her husband couldn’t pay his share of the house payment or his car payment this month and I wonder if they are married or just roommates. I know it is not this way with all young couples, but it seems to be getting to be the norm rather than the exception. That’s not how I have viewed my marriage with the exception of the time when we were separated. Then Riley was on his own and I supported myself.

When I took Riley back in there were expenses that needed to be met and his lack of responsibility for his credit cards needed to be reckoned with. Once again, we combined the money and I managed to dig him out of the hole he had created while still maintaining the obligations I had created before he came back. Besides that there were issues of the expense of taking care of him – personal aides, diapers, etc., etc. Using my employment income and his income, I managed to provide him with everything he needed – everything WE needed. And now, since I am retired, I have replaced the employment income with a social security check – a far less amount.

We have encumbered “joint” responsibilities – such as the lease on a house that accommodates our needs. I’m still paying on many of his prior obligations – such as a tax debt that I will be held responsible for as his legal spouse even after his death. Since his heart attack, any money we had put aside was used to meet transportation and other expenses while being at his side in the hospital which was more than two hours from home. He has had special needs with being in the nursing home as well. Why should I not use his (our) income to help pay for these encumbrances? Should I just ignore the bills and say “Oh well…”?

A divorce will not solve my financial problems. Any encumbrances made while legally married will still be my responsibility even after divorce. Also, if I divorce now, I will lose the only health insurance I have – my TriCare through the military. We need to stay married for another year for me to be “grandfathered” into TriCare. And I won’t be eligible for Medicare for another year. I will also lose the ability to receive the Veteran’s Admin allowance called “Dependent’s Indemnity Compensation.”  Divorce is not a good option for me.

My daughter reassures me that she will not take her father into her home. She says she is past it. But, I don’t trust that she will be able to stand by that decision as she watches him slip further downhill. I don’t trust that she has that resolve. My grandson, has shown incredible grief as he sat by Riley’s bed waiting for him to die. I didn’t expect that. I still must be the barrier between Riley, Alea and Ryan.

One of my readers believes I’m just after Riley’s “pension” money. Well… I guess she’s right. I DO want to be able to keep using the money in his retirement check. We are a legally married couple who have made financial commitments that are binding to us as a unit of one. I’m not willing (nor able) to go back to work full-time in order to meet obligations that are the responsibility of both of us. It might kill me to have Riley come back home and have to manage his care, but it will definitely kill me if I try to go back to being an employee in the working world. I’ll leave that job for someone who needs it more than I – like parents trying to raise their youngsters.

When I thought Riley wasn’t coming home, I started to prepare for a big loss of income. Moving with the grandkids and settling into a much smaller place was part of the plan. But, I was also looking forward to a future that included new adventures – like taking the OARS Group to the next level of public meetings. It will still happen – all of it will happen – it’s just that my timeline will be extended.

 Am I still in prison? Yes. But, it’s up to me to make those bars more elastic that they have been. I may not be able to escape permanently for a while – but I’ll still venture out when I can.

Outwit, outlast, survive...

I should have expected that something weird would happen on Friday the 13^th. But, I’ve always ignored the connotations of bad luck and simply gone on about my business. I didn’t see why this Friday the 13^th would be any different. In fact, I had planned the first ever public OARS meeting for that day. I figured that it might be a bad day for caretakers of end-stage alcoholics and that they might need some extra support. I was not prepared for how my day would go from a personal point of view.

The day before 13^th, I had received a phone call from the hospice nurse informing me that Riley was going to be removed from the hospice program because he appeared, physically, to be improving. In order for him to stay in the program, there had to be a decline in his condition. There was none. However, hospice does not do lab tests. So they really could not determine that Riley was dying from end-stage liver disease. All they knew was that he was not as yellow, eating well, and generally had a good attitude.

I asked what that meant to me. What would happen next? I was informed that Riley would stay in the nursing home. Nothing really would change except he would no longer be under VA’s hospice care program. OK. That was acceptable to me. I didn’t see a problem.

On Friday the 13^th I received a call from the business office of the nursing home. A very pleasant young lady wanted to know how they should proceed with the billing of Riley’s account since VA would no longer be paying for him being a patient. The daily cost will be $250/day which comes to more than $7,000 per month. I was a little taken back, because I thought VA or Medicare would be paying for his continued stay. No. VA doesn’t pay for any custodial care. Neither does Medicare nor TriCare. The only way to keep Riley in the nursing home was for him to be admitted to the hospital for three days. Upon his hospital discharge he could go directly back to the nursing home. The only problem is that there is no viable reason for Riley to be admitted to the hospital.

I explained that I am not physically capable to taking care of him. What would happen if I just didn’t come get him? The answer was that they would keep him, but they would start billing me for the $7K each month plus incidentals.

There had to be some other options. People have elderly family members put into nursing homes all the time. How did they do it?

I was advised to apply to Medicaid to try to get some assistance. But, I’m sure I make too much money for that type of aid. Then I was told that if I used the Medicaid option, all of Riley’s income would go toward the nursing home. I would be left with only income that I had separate from Riley. Well… since I’ve retired, that would leave me with only my Social Security. While I know that people live on less, I didn’t see how I would be able to pay my $1100 rent and my utilities with my $1200 per month. This did not seem like a viable option.

My next step, in the panic of realizing that Riley may in fact be coming home, was to start making phone calls. I tried everywhere in the Veterans Administration but it was Friday and all my calls were going to voicemail. I tried Medicare. I got a real person but the info provided was what I already knew. I called Medicaid and again there was no new discovery there. This Friday the 13^th was not turning out very well for me.

Images of me trying to get Riley into the van, out of the van, up the steps and into the house was more like a slap-stick comedy. Then there was the issue of not having a bed for him since I had gotten rid of the feces and urine saturated bedding long ago. How would I tend to his personal needs and still keep myself safe? I wasn’t sure and no one had any answers.

Late in the afternoon the hospice nurse called to tell me that they had decided not to discharge Riley until Friday of the following week. I breathed a huge sigh of relief. I had a week reprieve. Maybe I could get some help from someone.

I walked around the country house and saw all the boxes I had packed in anticipation of moving closer to the kids. I beat myself up over not listening to my gut instincts. I knew deep down that Riley is immortal. I didn’t truly believe that he was never coming home no matter how many times I had been told those words over and over again. Even when I gave my landlady notice, I had a little twinge in my stomach that something was just not right. I went ahead and made plans and proceeded to act on them.  I convinced myself that I could trust the medical community and move forward in my life. After all, more than five med pros had told me that Riley would be in a nursing home for the rest of his life.

The following Monday I was back on the phone again. I talked to the head of the VA hospice program for our area and even she was confused as to what had happened. She requested his records so she could review the decision. In the meantime, she told me to prepare for his homecoming but that she would not allow him to be discharged until the last day of July. I told her that if he comes home there is a good chance that I will die before him. I asked her what would happen to him then? She had no answer. I mumbled something about how irritating it was that my life is expendable in order to save his – a life that he clearly did not want.

I’ve called the Senator’s office again and they are trying to rush through Riley’s disability application in order for me to have the funds I need to hire a personal care aide. The VA has provided me with a hospital bed and wheel chair. I just found out I can also get other items I will need, like ramps into the house and van.

Today I will send an e-mail to my landlady and ask if I can stay another 30 days at this house. My plan was to stay with the kids for a while, but there isn’t enough room for both me and Riley. And I don’t want Riley around the small children. If my landlady does not agree – I don’t know where we will be living. If I can stay, I’ll have 30 days to find a place suitable for the two of us in the same town as the kids. It will have to be a cheap place because the cost of an aide will quickly empty what is left of our shrinking bank account.

As with every difficulty in my life, I always find a way to accomplish what needs to be done. Sometimes the way isn’t pleasant or what I want – but I survive. I know that the odds are against me right now. I know my health is not where it should be to take on the task of caretaking Riley. I know I’m in danger. Knowing all that means I must do everything I can to make sure that Riley does not outlast me. I am digging through all the packed boxes and looking for my “survivor hat.” I know it is in here somewhere…