Out of options...

Last Easter I wrote about listening to my great-grandchildren over the phone and how that renewed my strength even though I missed them terribly.

This year, I’m doing exactly what I need to do. I’ve been told over and over again that I need a break away from Riley. I need to regain my perspective and get some rest. The nurse has all but ordered me to get away for at least 24 hours. I doing as I’m told.

On Saturday I’ll be driving to the grandson’s house. I’ll make some stops along the way for groceries and new outfits for my great-grandkids. I’ll be taking myself out to lunch in one of the quaint little restaurants near the marina. I’ll arrive at the house in time to cook a good meal for the kids so they will come home from work to the aroma of their favorite foods. There will be eggs to dye and baskets to create.

Sunday will find me taking my daughter, Alea, out to breakfast before she heads into work. After that, I’ll take a walk on the beach near her house. By that time the kids will return from the other relative’s houses. There will be books to color in, hide and seek to be played and, of course, there will be eggs to hunt.

After dinner I will get back in my car and head back to the country. I will have pictures to post on Facebook and details to share with my brother. Most importantly, I’ll be rested and ready to deal with any Riley-ness that occurred while I was gone. A volunteer will check on him – but for the most part he will be alone.

Riley was supposed to have an echo-cardiogram on Tuesday. Unfortunately the tech had a death in the family and was unable to come in so it has been rescheduled for Friday. This is supposed to give us an idea of his heart’s weakness/strength. The test results were the determining factor of getting him into detox and then long term care. But, I’m not sure it really matters very much anymore.

Over the past week, Riley has gone from slightly yellow around the eyes to fluorescent yellow/green over his back and stomach/chest. There is no longer any white to his eyes. The nurse was surprised when she walked in and saw him in his rocking chair. She told Riley that his liver is shutting down completely and his other organs will quickly follow the liver’s lead. His blood pressure was high and his heart was erratic. Of course, Riley’s response was the same as it always is – he’ll live until he’s 104 and be shot by a jealous husband. Good luck with that was the nurse’s reply.

The nurse turned to me and told me that it really doesn’t matter if VA comes through or not because anything an aide could do for him now would not be enough. The only advantage of an aide at this point is to relieve me of some of the burden. It would not help Riley, but it might make things easier for me. And since it appears that I won’t need the aide for very long – I might be able to manage to pay for it myself. That is – unless the doctor will assign hospice care. Right now we only have nursing care and that will be over at the end of the month. Then again – who knows – that might be extended again.

Riley will not be detoxing and will not be going into long term care. At least, as far as I know at the moment. I’ve been here before -- many times. But, I think the Riley cat is about at the end of his nine lives.

When I told the nurse I was going to visit the kids over the weekend, she was extremely happy. Her concern was who was going to stay with Riley. I told her no one except for a one-time check in by a friend. She said that since Riley is insisting he can live by himself, let him be alone over the weekend. Whatever happens will happen. He knows how to call the rescue squad in an emergency and he knows how to reach me.

Am I nervous about leaving him alone? You betcha! I don’t want to come home to a burned down shell of a house or to find that he’s been on the floor the whole time because he broke his hip in a fall. I don’t want him to be in pain. If I’m here I can probably keep the house from burning down, but I can’t stop him from falling. He refuses to use the walker or take any other advice. He wants what he wants when he wants it. So I’m going to let him have what he wants – at least over the weekend. He wants to be left alone and I will leave him alone.

It was never my intention to force Riley into sobriety. That option was really never on the table. But, when it became obvious that I could not take care of him for very much longer, the option of long term care seemed to be a possibility. In the care of a facility he would not have the option to drink thereby extending his life. It was a side benefit and not the main goal.

If I had been able to get him a personal aide, the chance for an infection would be minimalized. He would get daily showers instead of weekly ones. His bed would always have clean sheets and his room would be tidy. His medication would be monitored. He would have had someone to argue with rather than just me. It isn’t that I can’t do those things myself. The problem is he is so resistant to my assistance that he makes it impossible for me to help him. He will allow a stranger to tend to him, but not someone he’s known for 45 years. I guess it’s a part of the insanity of alcoholism.

The long and short of it is this – Riley is out of time and options. Riley made his choice to drink after being sober for four years. He made an announcement to the family that he was going to go back to drunkenness because that is what he prefers. Most alcoholics never get a chance to make that choice because once the grip of alcoholism takes hold they are hard pressed to loosen the grasp. Riley had that grip loosened and was sober for a sizable amount of time, yet with a clear and sober mind, he made a decision to drink. And that’s happened not just once, but several times. Unlike many alcoholics – Riley chooses to die an alcoholic death. He is committing suicide by alcohol.

In the process of not knowing what to do or how to handle all of the digression of his condition, I lost track of my detachment. So for this weekend, I will detach from Riley and the chaos of his creation. I will make this trip and I will enjoy every single precious minute.

I got a phone call from my great-granddaughter because she was all excited about losing a second tooth. Oh my goodness! She is growing up and I don’t want to miss any more seconds of her journey!

My wife doesn't understand me...

We have a visiting nurse named Janet. It appears she may be a miracle worker. Each week she comes to our house and monitors Riley’s condition. All of her visits include suggestions to Riley that he cut back on his consumption. I expect that her words are falling on deaf ears as Riley doesn’t want to cut down.

Last week the package store was out of the large size bottles of vodka, so I bought him the next size down. These bottles are less than half of the large bottles, so I bought twice the number of bottles. That turns out to be less the amount I would usually buy. When I returned home I pointed out to Riley that it will be very easy for him to keep track of how much he drinks with the smaller bottles. Since he’s been drinking half of a large bottle, maybe he could try to just drink ONE of the smaller bottles a day which amounts to less than usual amount.

To my surprise, Riley agreed. He said – “Well, Janet DOES want me to cut down, so this would be good.” When Janet arrived, he told her he was only going to drink one of those bottles a day. She praised him and told him that would be much better for him.

Yesterday, when I got up I checked the vodka supply. He had drunk only one-half of one of the small bottles on Friday!! I checked the garbage can and found no empty bottles. So he had cut back remarkably since he said he would. I was very proud of him and made sure I told him so. I pointed out that if he could keep that up, I may not have to put him into long term care.

Then I asked if he might consider taking better care of his butt issue. He agreed to take better care to keep it clean and dry. I’m hoping that the lack of alcohol may make it easier for him to comply. This morning he reported that he was no longer having any pain in that area and that he’s been trying to do exactly as the nurse advised.

 We only have a few visits left with Janet. I truly wish there were some way she could keep coming at least every week. I don’t know why Riley has responded so favorably to her. I don’t really care about the “why”. I’m just happy she has gotten through even if it is only temporary.

I suspect that Riley may have a crush on her. She is very attractive and she is also very married. That probably sparks Riley’s romantic interest. That’s exactly the kind of woman he has chased after in his less drunken days. He actually told her, while I was in the room,  that he wanted me to go away so he could be with her. She asked him what he had to offer her. I could tell that he was not going to say what he wanted to say – which would have been crude. Instead he said that she understood him and I didn’t. Oh!! He used the old “my wife doesn’t understand me” line!

Janet and I always have a little “meeting” as I walk her to her car. This time we were almost rolling with laughter as we talked about Riley being smitten. I was happy she was not offended by Riley’s words. And I was happy for the humor it brought to the situation.

If it takes Riley desiring a woman to stop him from drinking so much, even just for a short time, then I’m all good with that. I know that it is short-term. When Janet stops coming around, he will forget the promises he made to her and resume his previous drinking habits. I know he will blame me that she isn’t coming around anymore. I’ll be the bad person. I can take it. I’m used to it.

With Riley cutting back, two major projects completed, and the landlady’s semi-annual inspection over with, I was able to actually relax yesterday. We had thunderstorms, which I enjoy. I cuddled onto the sofa with my favorite throw and flipped through the television guide looking for some mindless entertainment. I drank hot chocolate with lots of whipped cream and throw the ball down the hallway for Jade to chase. I napped on and off. Both, Riley and I, snacked on yesterday’s fried chicken and mac and cheese, so I didn’t have to cook. Riley was quiet all day and only fell a couple of times.

Yesterday was a good day. I woke up this morning feeling rested and I found myself in a great mood. Riley joined me in my office with a part vodka/part coffee cup. His memory is very weak and I showed him houses that I had showed him yesterday. We had the same conversations this morning as we have had on previous mornings. This will be a fact of his life for the rest of his life. He has so damaged his brain that he will never be totally able to remember from day to day.

My hope is that Riley will continue to cut back on his drinking or at least stay with the half of the smaller bottle a day. If that happens, I might be able to keep him with me and be able to get a part-time personal aide for him once the VA application is approved.

I have been assured the VA app WILL be approved, but the question the percentage at which he will receive benefits. Since I’ve gathered all the civilian medical records myself and organized it into a neat package, I’ve cut off months from the application process. In previous years, it could take as much as a year (or more) for an application to be approved. Recently there has been a big push to get the applications processed faster. Currently, the average application is either approved or denied within six months.

As for my talking to Senator Richard Burr (not Barr as I previously wrote), I was so busy on Friday that I did not call. I did send an e-mail to his office and requested that he call me or meet with me. That will not stop me from calling on Wednesday (a less chaotic day for me). I want to make sure I have all my thoughts in order when I actually talk to him. My primary goal is to see if I can get Riley evaluated by the VA quickly rather than having to wait the average six weeks to two months for an appointment. I’m willing to take him anywhere within 500 miles to make that happen.

I also want to have some kind of written document of what kind of things I would like on either a petition for an initiative or something of that nature. It’s a work in progress and I’m grateful for all the excellent feedback I have received. Thank you, readers.

You don't scare me...

Dear Readers –

Since March 22^nd, I’ve received three e-mails of a hostile, negative nature that have been disturbing. They have increased in intensity to the point of being physically threatening. This person prefers to harass me via private e-mail rather than as a public comment on the blog. If this person has not had their e-mail hacked, then I know who she is and where she works.

Here’s the deal – this person has told me to drink poisoned Kool-Aid and lie down in the dirt and die. You may rest assured; I will not be doing that. I will not respond to her hate mail by sending a reply.

However, what I feel I must do is to change the way I accept people as members into the OARS Group. If you wish to become a member of the OARS support group, please e-mail me and tell me a little about your situation. After that, I will determine if you are a lurker or someone who truly wants what we have to offer.

I am accustomed to some negativity, but this goes beyond a simple difference of opinion. I will not be scared away from posting on the blog. I will not be frightened into not sharing information with my readers. I will stand tall and continue to share my journey as support to others in my situation. No one can put enough fear into me to make me stop.

Signed,
Linda Jane Riley

What would you change...

There has been some concern that Riley’s heart may be experiencing erratic beats. His blood pressure has also been a bit erratic. So I took him to the primary care doc to get it checked out. The result was that he found nothing wrong. They didn’t do an EKG, they just listened with the stethoscope.

OK. I was good with that. There was nothing wrong… except… something just didn’t feel right.  I told both the doc and the PA that I wanted to make sure his heart was healthy enough to withstand the stress of detox. I wanted to put him into a long term care facility, but he would have to detox first.

The response: EVERY alcoholic is healthy enough to detox at ANY time. ALL alcoholics should detox no matter how bad their health is.

After the statement, they turned and walked away from me. They said I should call if I need anything else. Uhhh --- I need something else. I need respect and an open mind. How about that? Do they have any of that in one of those little locked cupboards in the supply room? I think not. This isn’t the first time I’ve felt this way while in their office. Hmmmmmm…. I think that nagging little feeling was telling me that it was time for a new primary care doctor.

I took Riley into my cardiologists do an EKG and give me a second opinion on the healthiness of Riley’s heart. The EKG showed nothing amiss. However, an EKG doesn’t give a true picture of the health of the heart. The only way to determine if the heart has been worn down is to do an echocardiogram. That will be performed on Tuesday. Riley will also get a halter to monitor his heart over a space of 24 hours.

In the meantime, the bath aide discovered Riley has an open bleeding sore in the crack of his butt cheeks. This is caused by not changing his diaper often enough and him not cleaning his butt. He has diaper cream that he is supposed to be using, but it seems as much as he insists he is using it – he is not. If I can’t keep this sore clean it will certainly become infected. Riley is very resistant to me helping him with any of his personal hygiene and that’s why we have a weekly bath aid. Weekly isn’t going to work. He needs daily supervision that will insure he treats this sore so it can heal. The type of infection from the location of the sore – can be deadly very quickly.

Gil, has been spending a lot of time trying to find an VA long term care facility that will accept Riley for detox. He has called every place and every one he knows. There is no help coming. The VA would have to admit him to a substance abuse program that is long term which would start with a medically supervised detox. No place will take him because he openly states he will resume drinking as soon as he is through detoxing. He can’t just go to a facility (any facility) for long term care if he does not detox first. Since he doesn’t want to detox or go to any facility – there is nothing I can do to force this issue. Gil thinks it’s really an insurance issue – insurance companies don’t want to pay for lost causes.

I don’t know if getting guardianship is going to be the answer either. I’m his wife with a full power of attorney, so my question to my readers is – Do I need to get guardianship? And exactly what will it do for me?

Last month, I talked to the Magistrate about having Riley committed as being a danger to his own person and others. The Magistrate wasn’t enthusiastic about the whole idea. All that does is get him put into the back of a cop car and taken to a hospital for evaluation. After that, a determination will be made as to what is in his best interests. I don’t want him treated like a criminal. I suppose I can take this route – but it will be my last resort.

What I need is a personal aide for Riley who will come in and help with his hygiene and the cleanliness of his personal space. He will not allow me to tend to his sore and gets belligerent when I try to take care of his room. But, when a stranger comes in, he is cooperative. But – I can’t afford it.

The application to the Veterans Administration for disability compensation can take up to six months to process. It can take more than six weeks just to get an appointment for a VA sanctioned evaluation.

If the only issue were all the other alcohol related diseases, I would say – OK, if the app is approved before he dies, I can get some help in here while he is dying. I truly believe he has another six months before he dies from just the alcohol and once I get the app approved, I can afford to hire someone to maybe extend that life just a little longer. But now, with the new sore on his butt, I don’t have that much time. If this sore becomes infected, Riley could be dead in less than a month. It would be a shame for him to die because I couldn’t get him proper care when I can see it is just out of reach.

The good Senator from North Carolina, Richard Barr, is on my list of people to call today. When I went to his website I found information about how he supports health care improvements for veterans. I want to ask if there is any way he can put a rush on Riley’s application. After all, I have provided all the civilian medical records and information. That’s one step they won’t have to deal with. I don’t think we are any more special than anyone else, it’s just that I’m quickly running out of options here.

Even if my phone call doesn’t end up helping Riley, maybe it will bring to attention the fact that there is a big disconnect in help for caretakers such as myself. Maybe there should be more “wet house” types of facilities where drunks can live out the rest of their lives as drunks without inflicting their insanity on others while being monitored for things like broken arms or sores on the butt. Maybe substance abuse centers should have to take any drunk requesting admission even if he says he doesn’t want to stop. After all, isn’t that why Interventions are done?

I get close to 800 hits daily on this site. All of you have an opinion. If I could get my thoughts together and get a petition started on changing how caretakers and drunks are treated, what would you want to see on that petition? How would you like to see things change? Is it more required education for the medical community? Should a different criterion be established to get drunks into detox/rehab? A program that gets the caretaker in-home help when reaching the end of the drunks mortality? What would you want me to lobby for, if I was to go in that direction – which is apparently where I am headed?

I'll be there...

Sometimes we take things and people for granted when we don’t even realize we are doing it. When I do this and then come to my senses, I feel guilty for being so selfish. That was my case last week, when I tried to implement a part of my plan to maintain my sanity as Riley makes sanity more difficult to achieve.

I knew that there been some problems in Carrot’s life, but they never anything that was major. I knew of a few health issues for her and all the other typical problems that a couple has concerning, house, home and family. But nothing major. We had been planning for her to visit me for quite some time and her husband supported her in making the trip. But, we had been waiting until things were a little more “settled”. Well, if that’s the criteria, we will probably be waiting a very long time.

Carrot doesn’t read my blog every single day. She waits for a quiet time and then reads a month’s worth at one sitting. She doesn’t feel the necessity for a daily dose because we talk on the phone about once a week and therefore, knows what’s going on.

I couldn’t reach her by phone over the past couple of weeks and I really needed my friend. I knew she hadn’t read the blog because if she had, she would have called to check on me. In the back of my mind I was thinking, I really need her now. So, I started looking for airline flights from California to North Carolina that would not require using my great-grandson as collateral. When I found the perfect non-stop flight, I punched in her number on my phone. She answered immediately.

“Hi! Are you OK?” she asked – I told her I was fine. “Well, I’m kinda busy right now, can I call you back in a few minutes?” – I started to answer, but the background noise stopped me from saying that I really needed her.

“Where are you?” I asked.

“Somewhere between Chico and Yuba City, I’m taking Hubby to the hospital.” She sounded out of breath.

In the process of the phone call I discovered that her husband had had a heart attack and that she was in the ambulance that was transporting him to the hospital. The only way they could get Hubby to agree to go to the hospital was if Carrot never left his side. He was frightened and was clinging to his wife for comfort and support. Hey!! Wasn’t that why I was calling her?!? For comfort and support?!?

My focus shifted from what I needed to what Carrot needed. It was as if someone had just walked up and slapped me in the face to get my attention. She called me back the next morning to let me know that Hubby was doing much better, but he would be going in for another surgery in a few days. She never said that things didn’t look so good for Hubby – but I knew. I listened between the words and heard what she wasn’t saying. She would never say she was worried or frightened – to not say it means you don’t want to acknowledge it. She wouldn’t ever give herself the luxury of being so self-focused. There was no time for her to indulge her worry or fear.

I felt guilty that I was indulging my own worry and fear and was so self-centered that I had not contemplated that maybe she needed me more than I needed her at that very moment.  We had never discussed a plan for this scenario. I checked out airline flights in the opposite direction of what I had searched previously. I could leave here in about seven days for the better prices, but the big question still loomed ahead of me. Would I be able to find someone to check in on Riley? The answer to that was a resounding – NO!

Since the ambulance ride, I’ve been talking to Carrot at least daily. Hubby made it through the surgeries and is being discharged sometime in the next few days. His kidneys are not doing so well – but they are better than they were. He now has a stent in his heart. He is on the mend.

It was a good thing I didn’t end up going to California because Hubby’s kids flew in from out of state and Carrot’s kids were there with her. Sleeping space would be difficult to find in their quaint little house.

The thing that really got me was that during each phone call where I was trying to be comforting and supportive, she always managed to ask how I was doing. She wanted to know how things were in North Carolina and what could she do to help. I always told her not to worry, things were just fine out here in the country. But, she has always been able to listen between my words as well. She knows. Without me saying anything she knows. She also knows that if I could be there – I would and just as much as I know she would be here if she could.

I’ve taken Carrot for granted. I’ve always thought that she would be here at the drop of a dime if I asked her to come. The truth is she would be here – if I asked. Oh!! She’d never leave Hubby while he was sick. I would never ask her to do that. But, I almost did without thinking. I almost asked her before I knew what was happening. I must not do that again. I must not forget that I’m not the only person in everyone else’s universe.

Sometimes, in all the insanity, I forget that there is a world outside of this chaotic circle. People are living their own lives complete with issues, chaos, and problems. Sometimes my issues are really manageable where other peoples may not be at that moment.

Hubby is a great guy. I love him because he loves Carrot so very much. He makes her happy and that’s something she hasn’t had a lot of since my brother died and left her alone. He’s not an alcoholic or addict – except maybe for chocolate. He’s just a man who was nicknamed Hubby because he’s so proud to be Carrot’s husband. He’s an intricate part of our family and I want to see him get healthy and stay around for a very long time.

I hereby relinquish Carrot from her pact that she made with me to drop everything and come to each other’s aid in a moment’s blink. We have a new pact that allows us to be there if we can and when we can. That makes a lot more sense.

Nipping alligators...

I was watching Dr. Phil on Thursday, March 22, 2012, when he aired a segment titled “Partying to Death”. It was about two young people whose binge drinking has become a common occurrence for them. The video clips and attitudes of these youngsters were very disturbing. I wanted to reach through my television screen and just slap some sense into them.  But, I’m not a violent person and instead I just watched as they tried to justify the destruction of their lives. For the young lady, the destruction was not just about herself as it was revealed that she was pregnant and to celebrate her pregnancy, she went drinking!

You can find the link here:

http://www.drphil.com/shows/show/1763

As a mother who has lost a son to alcohol, I was appalled at the things revealed about one of the mothers. But, then I realize that some people are really just muddling along trying to do what they think is best. I don’t think either of the mothers ever wanted to inflict harm on their children. I understand their confusion and frustration. What DO you do when whatever you do, you always feel you’ve haven’t done enough or that what you’ve done has just been wrong?

I wonder nearly every day what I could have done that would have changed my son’s outcome. There’s certainly enough blame to go all around. I blame myself (of course), his fiancé, Riley, his fiancé’s father, an ex-girl-friend, and all his local “friends.” In my opinion, we all played a part in escorting Brian to the grave. As his mother, I feel the largest amount of blame falls squarely on my shoulders.

If I had only known then what I know now… How many times in our lives have we said just that about so many things? The truth is we don’t always know everything all the time. Things we need to know are often never revealed to us until it is too late. I can’t change the end result for Brian, I can only continue to work towards forgiving myself for not knowing what I should have known. I’m not sure if I will ever come to the place where I can forgive any of the other parties to his demise. I work on it. I try to understand their points of view. But, for the ex-girl-friend and Riley – there will never be any forgiveness in their direction.

One aspect of Dr. Phil’s show had to do with the brain and liver. He showed a real brain of a healthy person and compared it to a real brain of a person who was an alcoholic. The brain was remarkably smaller and there were holes that were clearly apparent. Along the same lines, he presented a healthy liver and an alcoholic’s liver. The difference was clearly visible even over the many miles of video broadcasting wave lengths. This is something that I know. The information was not new to me. But each time I see the real deal, I am always in shock and awe. I guess it’s one of those things I know, but don’t want to have as a constant visual.

But that brought to mind the idea that maybe our children need to see that true to life visual. In our efforts to protect them from the things that may damage their delicate psyche’s we also protect them from things that they really need to know. It’s kinda like the time when Alea was about two years old when she kept climbing up the cupboard drawers to watch me cook. She was an uncontrollable monkey and I was always afraid she’d get up there when I wasn’t in her sight and touch the electric burner when it was hot. One day, after she’d made the trek up the drawers and the burner had just been turned off, I took her little hand and told her the burner was hot. I then placed her hand over the burner so she could feel the heat. Her hand never touched the burner, but the heat was rising above it so she got the idea. After that when she watched me cook, she would repeat to me – “burner hot” “no touch”. She knew not to touch that burner.

Maybe if I had told Brian, from the age of two, that alcohol is hot (dangerous) – maybe if I had shown him those pictures over and over again. Maybe he never would have even started drinking in the first place. OK. So I know how unrealistic that is. Maybe two years old is too young. But, still, I believe education is the key. Knowledge is survival. If I had trained him earlier… if… if… if…

There is insanity in living with an alcoholic and children of alcoholics are endangered species from the moment they arrive into the world of the alcoholic family. The non-alcoholic becomes enmeshed in the dance of keeping the family together or protecting the family from the fall out of the alcoholic. The alcoholic’s need for the non-alcoholic to take care of “things” causes them to lose sight of taking care of the children. The kids grow up in the insanity. Why shouldn’t they think it’s normal? What is normal is what you’ve always known to be true.

I am reminded of the phrase “It’s hard to remember that your main objective was to drain the swamp when you’re up to your butt in alligators.” It’s hard to remember that we need to educate our children on the dangers of alcoholism, when we are so busy protecting the alcoholic. We may think we are protecting our children, but the reality is the only way to truly protect a child from alcoholism is to remove drunken insanity from their lives. At the same time, we must educate and provide the knowledge they need to keep them from falling into what could be a “family trait.”

Generally speaking, I love the Dr. Phil Show. He speaks from a point of honesty and doesn’t molly-coddle his guests. I’m not much on molly-coddling. I believe the reality of the situation is brought home to all the parties of this segment. I’m not sure if you can see the whole thing on his website or not, but just the amount available for viewing is great to watch.

Dr. Phil – You get a giant size THUMBS UP for this segment! Thank you for helping us keep in touch with reality when the alligators are nipping at our hindquarters!

Rain on the horizon...

In the process of “tying up loose ends”, I had made a phone call to the IRS yesterday. I was hooked up with IRS Agent Scott (I always wonder if they use their real names).  I simply wanted to know what, if any, IRS returns Riley had not filed and over the past few years. This guy was quite inquisitive and we got into a conversation about how things have changed over the years. I had mentioned to him that I had taken care of my Mom, brother, and now my husband as they approached the end of their lives. He asked – no -- he STATED – that I’m very “old school” and that’s not the way I should have done things. Then he proceeded to tell me that there were PROGRAMS set up for just those types of situations – taking care of our elderly or infirmed when there was no insurance or not enough insurance.

So, maybe it’s not such a good thing that I’ve found my voice and confidence again. Sometimes that can get me into hot water.

“Just where the hell are these programs? You tell me where to find them because I have a lot of people who would really want to know.” He replied by telling me that Social Security, Medicare and Medicaid are designed to help those who cannot help themselves.

Of course, now he had just put another log on my already irritated fire. “Do you know how long it takes to get any response from any of those agencies? Have you ever tried to use them to get immediate emergency assistance?” His reply – everyone must prepare themselves for the possibility of a crisis. That’s why we are supposed to save money. He continued to say that we should never try to take care of our loved ones by ourselves. We should put them into places where that is done for us and the government has programs to help people, like me, to not have to “take care” of anyone but one’s self. And once, again, he says, our society is now designed so that none of us ever have to take care of a loved one out of our own pocket. We should save for our own rainy day and use that money only for our own personal needs.

Who is this guy?? Is he really making enough money at his white collar desk job at the IRS that he can afford to SAVE money for a rainy day?? Does he really think he can get enough into that Rainy Day Account to cover the cost of everything NOT covered even when we have health insurance? And does he not realize that many people, after losing their jobs in these economic times – do NOT EVEN HAVE insurance? Let’s see him pay for one overnight hospital stay for himself out of his rainy day fund. Oh but wait, according him, he doesn’t have to pay it if he doesn’t have the money because the government will pay it for him. What a crock!!!

I thought I should try to end the conversation – after all – I had gotten the info I needed. I meekly (and that’s hard for me) said something about – yeah – well – good luck with that. I tried to hang up. But… NO… he had more to say. I must admit. I stopped listening. Oh My Goodness, I said, something is going on that I MUST attend to… THANK YOU for your help… Good Bye.

It’s a sorry state of affairs that a person who gets paid via taxpayer money has such an attitude. I don’t understand it. Maybe I just didn’t get what he was saying. I’ve been known to misunderstand a lot of things. I must admit he was polite and provided me the desired information in a timely manner. It was only when I told him that I was trying to tie up Riley’s loose ends because I was his caretaker as well as his spouse – that he started to inform me how financially irresponsible I was for spending any money on his care.

I am among the minority. Riley is very well insured as far as health insurance. Do I need more money – yes – because there are things I feel that would make life easier if I had a few extra bucks. I’ve already covered that over the past few days. But, my thoughts are not about me or Riley at this moment. My thoughts are about the people who can’t get certain medical tests or into a rehab center. I’m thinking about the people who no longer have health insurance for one reason or another. I doubt that any of them have a Rainy Day Account that’s going to have enough money in it to cover their singular heinies.

I’m also thinking about all the caretakers of all sorts of people besides the end-stage alcoholic – what about parents, children, brothers or sisters? As they lie dying in our arms, do we say I won’t take a penny from my own rainy day account to help you get that prescription or blood test?

And where are these programs that this guy is talking about? On one hand he is saying our government will take care of us and on the other he’s saying we are each on our own and should only be self-serving. I’m confused. I don’t see any government programs getting uninsured alcoholics into rehab centers. I don’t see any Calvary rushing in to save any of us.

I guess I’m just a stupid old woman, but I’m not buying an ounce of what this guy is spouting. Our conversation was recorded “for training purposes”. I wonder what the listeners will think of his theories. I wonder if they will try to find any of those programs and refer me to them. I doubt it. And I could go off on another tangent about recorded conversations, but I won’t.

However, IRS Agent Scott, gave me the info I needed and I won’t be making any calls back there for a while. I got what I needed – and I’ll just leave the rest!

Negativity breeds reflection...

I had a pretty productive day yesterday and was away from the house for six hours --  that’s SIX or 6 long hours! That’s the longest I’ve been away in the past couple of months. Although I had a lot of errands to run, the time out was pretty darn great. Never mind that I spent at least an hour being lost in a commuting nightmare maze causing me to drive in circles. Never mind that because I couldn’t decide where I wanted to eat, I didn’t eat at all. That didn’t faze me in even a little bit. I was happy that I was not anxiously watching the clock. I enjoyed my taste of freedom and will not hesitate to do it again.

When I got home, I read all the comments from yesterday’s post. Thank all of you for your continuing support. But, the e-mails were certainly another story. I guess it is easier to send an e-mail when there is something negative that you want to say. That’s OK. I welcome the e-mail and if they are negative, they force me to stand back and take an objective look. Negative e-mails are just as good as the positive, Maybe it’s easy for me to say that because I get a lot more positive than negative. Either way, I guess, just like Lucy, I have a little ‘splanin’ to do…

First I want to address the money issue. I’m definitely not in this for the money – in fact there is NO money. Riley is NOT a wealthy man and when he came to stay with me I actually had more income than he did. He benefited from that immensely. Caretaking an end-stage alcoholic is not the most rewarding way for a gold-digger to dig.

As the spouse of a retired military man, I WILL receive his retirement pay no matter what. Even if I had not taken him back in, I would still have receive 55% of his regular military retirement check right up to the day I die – even if I was to re-marry. That was never an issue or a reason for taking him back. Anything additional I would receive thru VA only amounts to a couple hundred dollars.

The Veterans Administration disability compensation is something he should have applied for way back 20 years ago. But, neither of us knew it was ever an option until a few months ago. I applied for it because it is money that is due him. The secondary reason was that I would be able to hire a personal aide for him which would help both him and me. It would mean he would not have to go to a care facility at all. He could live out the rest of his life in the manner he wants. It doesn’t amount to a lot of money at the most $3K at the least $1K. That is the difference between a full-time aide and a part-time aide. The other benefit of having the VA money is that I’d have enough upon his death to give him a proper memorial service in the place he loved the most -- CA. As it is presently, I will have enough to get him cremated and turned over to the Navy for burial at sea.

Even if Riley isn’t going to continue to live with me, the VA money gives me the means to be able to visit him in whatever facility he resides.  He will most likely be in West Virginia. That’s a long drive for me, so visits have to be multi-day events rather than once a week. I’d prefer for those visits to be at least once a month rather than once every three or four months. I won’t abandon him – I don’t want him to be alone. It is the right thing to do.

When I took Riley in, I had a simple task to perform. All I had to do was take care of him while he was dying. Believe me, he was extremely close. My plan was to give him a soft place to die. It was his choice to die – not mine. The problem with the plan is that as humans we have a tendency to preserve life. I think it is a natural instinct to try to save someone when you know that just a few moments of hesitation will end the breathing of another human being. So my plan to let him die failed and instead of having him with me for a few months, I have ended up with him for several years after the day he entered to my home. More than a few months was never in my plan. He was supposed to come to me and then die. But, he didn’t die. I didn’t prepare a Plan B because I really didn’t think I needed one.

One part of the plan was successful. My daughter no longer has the notion that she will take care of her father. Although, if push came to shove – I know she would step in. If something happened to me, she would take over. But, outwardly, she will not take him just because he is her father – she will only take him if there is no other choice. I’m extremely happy for that.

Now I want to address the issue to those of you who seem to think that I’ve spent all this time trying to get Riley to desire sobriety, detox, go to rehab and share a happy loving life with me. Out of all the e-mails, I think those were the ones that bothered me the most. Because if you think that’s what I want, you have not read all my posts. And even if you have read all the posts – and still believe I keep him with me as an attempt to reclaim my marriage – WELL – the 60s must have been so good to you that you have not fully recovered from those years yet.

I cannot say strongly enough that Riley’s sobriety is Riley’s responsibility. Whether he drinks or not is his choice. Life or death is his choice. He has made his choices clear and I’m not in this to try to foster sobriety for him. I have never had any delusions that I can get him to live a sober life. After all, how many times do we have to go thru detox and rehab before everyone understands that it’s just not the path that he wants to take? I’m not in this to try to save him from an alcoholic death. I just want him to have a peaceful transition into the afterlife.

Just for the record... if you wonder why I do the things I do, read my post "Why don't I just..."

I have no dream of a life from the past as Riley’s wife. Even if he were stone cold sober for more than 10 years – Riley and I have NO future together as a loving married couple. Riley is the father of my children and we have remained friends through the years. But, there are things from the past that are way beyond what I’ve written in this blog. My book, The Immortal Alcoholic’s Wife contains much of the information that might show why I can never be a REAL wife to him again.  You would also have to read the book to truly understand why taking on the role as caretaker has been the natural thing to do. I’m still trying to write the closing chapter, but I don’t know yet how it ends.

I must admit that I have gotten a bit off the path with Riley. Over the past few months, I’ve been where I am in a “Frog Soup” kinda thing. Since Riley was last in the hospital, I have lost my focus – which was to give him a soft place to die. Somehow, I was thinking that if I could keep him alive long enough to get the VA money, I could keep him here so he could die here in this soft place. If he died before the app was approved – well OK. I’ve still accomplished what I set out to do. If he continued in a downward spiral, I would have to put him in a long term care facility – a cold impersonal atmosphere without his rocking chair or dog or computer. For his own personal comfort home is best. Unfortunately, it is not what is best for me.

It’s not just a matter of letting him go and live on his own to set him up to hit bottom. The only bottom for Riley is death. As a member of the human species, no matter what Al-Anon says, there comes a time when letting go is only acceptable under certain circumstances. Where things change is when he can no longer take care of himself even in sobriety. When even in sobriety, his brain has become so permanently damaged that he makes choices that harm other people. In my humble opinion, since he lives with me, I have a responsibility to try to control the havoc he will wreak upon society. I will not just say –“ here’s your car keys – you’re on your own buddy.” Instead I’ll just keep working plan after plan until I finally discover how to make sure he’s safe and make sure my life doesn’t get destroyed in the process.  I have let go of any possibility that Riley will ever live on his own again. I have let go of any hope that he will ever want to be a responsible, caring, active member of society.

Something happened in my head when I heard the words – I truly believe he has less than three months. I wanted to provide him comfort and make his last few months as happy as possible. I cooked his favorite foods and when he said he would like to have something, anything, I went out of my way to make sure he got it. I spent some time watching his TV programs in the den with him – programs that I dislike after years of watching the same re-runs over and over again. I did everything for him. WHY?? Because I lost my way. I was so intent on providing for him, I forgot about providing for myself. Riley has been a dying man for many years now. I have come to my senses and realize that giving him a soft place to die doesn’t mean I should be left in a hard place.

But, Riley has proven to be immortal – time and time again, he has returned to be a problem for several more years. Sending him to a long term care facility means he will detox and be in the center for several years or possibly for the rest of his life. I don’t know if he will die there. But, what I do know is that I will have my life back. My depression is lifting and I feel the fight coming back from hibernation.

Ahhhh – this feels good.

Collateral damage update...

Somewhere in the midst of all this insanity I have forgotten to do something. I forgot to detach. As I have become weaker and Riley has become more demanding, I have forgotten to stand by my own rules. It was YOU, my commenters and e-mailers that have made me remember the only way to deal with my current situation. I read every single comment and e-mail and I’m thankful for a crowd of people who aren’t afraid to say what they think. You are my look into myself and I could not get through this without you.

The doctor’s appointment was a nearly a useless waste of time. Here’s how it went:

Getting Riley into the car took about 20 minutes. It was pretty frightening to have him nearly fall on the brick steps. But I managed to get him in and off we went.

It takes about 30 minutes to the get there, but there was some roadwork, so we had to take a detour that I was not familiar with. The detour prompted Riley to start complaining about how long it was taking. The half hour drive took almost an hour. Fortunately, I had planned to be early, so we were not all that late.

Then there was the wheelchair issue. Riley didn’t want to use the wheelchair. He wanted to walk. I refused to allow that because I knew he was not steady on his feet. I didn’t ask or plead that he use the chair – I demanded. Riley shut up and got in the chair. Of course, he had to drag his feet the whole time which made it more difficult for me to push.

Once inside the office, the triage nurse tries to take his blood pressure on his injured arm. I remind her that she needed to use the other arm and she obliges. Now inside the examining room, the PA, Erica, informs us that there is nothing wrong with his blood pressure or his heart rate. She says he’s perfectly fine, but she’ll check his potassium and get an x-ray of his arm. I tell her all the things the visiting nurse has been telling us. Erica goes to get info from the home health care agency because they don’t have their records. Before she leaves I ask if it would be possible for us to have hospice since the visiting nurse will only come one more day. Erica’s response is that Riley doesn’t qualify for hospice, but she will be sure to ask the doctor. She tells me there is nothing wrong with Riley – he’s just inebriated.

We are directed to the lab where Riley raises his voice to the lab tech. I step in and tell him not to be disrespectful to the techs. He shuts up and lets them get their blood. Riley is angry because he will have another bruise where they took the blood.

The next step is the x-ray lab. There is no problem here and we are successful at getting the film done. There is no break in Riley’s arm, wrist or hand. He is just taking a long time to heal because he is inebriated.

I ask Erica if Riley is healthy enough to detox and her response was: “EVERY alcoholic is healthy enough to detox. It is the best thing they can possibly do. It is the thing he needs to do.”

I stopped in my tracks. I was shocked to hear her say EVERY alcoholic should detox and that they are ALL healthy enough to do so. Obviously this person has never witnessed a detox. Has no experience with alcoholism at all. I didn’t want to be disrespectful – but really??? I quietly told her – Well… that’s just not so. I told her I wanted to put Riley into a long term care facility, but he would have to detox first. As she was walking away she said, “I believe that would be best for everyone.”

We left. We made the tedious adventure of getting him back into the car and home. Once inside the house, he fell trying to get into his rocker. Then decided instead of the rocker he’d go take a nap. He fell trying to get to his bed.

I was crying tears of frustration as I started making some phone calls. I called the only doctor that has not submitted Riley’s medical records and is the one thing holding up the VA application. Next, is the VA rep to find out what would happen if the records are lost. But, he’s not in – have to call tomorrow. Then I called a local nursing home that I’ve been told will give the patient small amounts of alcohol to keep them from going into detox.   It was true – they will administer the alcohol, but there must be a treatment plan from a physician and the treatment plan must have a goal of getting the alcoholic healthy enough to go to detox and then rehab. Hummmmm…. I doubt that Erica or the good doctor will have any part of that.

My next call was to Gil, the friend who happens to be an addiction counselor. He was appalled at what I had been told at the doctor’s. I asked him to help me find a place where I could send Riley for long term care. I just don’t seem to be able to do it anymore. Gil tells me he has been watching me go downhill for months and was very happy I was asking for his help. He thinks we may be able to get Riley into a VA long term care facility in West Virginia.

It was late and nothing would be discovered until tomorrow. I felt defeated.  I needed someone to just listen to me vent. I have been feeling more and more alone lately even though I have many supporters and can always go to the OARS members. But, I needed more. I called Carrot – only to find out her husband had just had a heart attack and they were on their way to the hospital. Georgia was still at work. I finally got through to a friend who has been in my position. She expressed her concern for my well-being and reminded me that I have not been detaching from the situation. I listened and realized she was absolutely right.

This morning I came into my office and read all the comments from my last post. When I read the comment from Jenna I knew she said it best. She understood and offered perfect advice. It’s advice that I am taking. Actually, I started doing her suggestions before I even read the comment. I’m so thankful for my followers.

I also got an e-mail from a follower who said there was an old Italian saying – Sick people live forever. I think that just about says it all.

Today will be a busy day for me. I have phone calls to make and plans to finalize. I also have to find a quiet little cabin in the woods where I can just re-charge my batteries and re-claim that strong, determined woman that used to be inside this body. Today is the day that Riley will live by my standards and I will not just placate him by being subservient. Tonight I will cook what’s healthy for me. I’m taking back my life.

Collateral damage...

For every alcoholic there are at least five people who are caught in the collateral damage. Often one of the collateral damage group will precede the alcoholic to the grave. The stress and insanity of being in the life of an alcoholic can cause the non-alcoholic to wear down and not be attentive to their own needs. The lack of self-attention can generate into health issues.
I know that’s where I am and somehow I feel that I’m in quicksand and cannot pull myself out. Every time I start to focus on myself, Riley has an issue that needs immediate attention. I drop what I’m doing or alter my focus and he has regained control of my life. I never intended for my life to be just about him. Yet, here I am – reaching for that branch that can pull me out only to have the branch break just as I grab hold.

The cavalry is on the way. When I start getting money from the Veterans Administration I can hire a personal aide for Riley. That will allow me the opportunity to go to the gym and cook the right food. Right now, I cook whatever Riley wants and often what he wants doesn’t fit into a healthy eating plan for me. I don’t have time or energy to prepare to totally different meals. An aide can help with his meal planning and preparing.

I was once asked who is the most crazy, the alcoholic or the caretaker. Of course the caretaker is more crazy than the alcoholic. Who in their right minds would volunteer to take care of a belligerent, abusive, incoherent drunk? The answer is a person just like me. We can’t blame the cloudiness of a drink for making an irrational decision. We can only blame ourselves. Sometimes we don’t even realize that we’ve made a decision until it’s too late. But, no matter how we got here – here we are and if things don’t change they will remain the same.

For me – I CHOSE this boulevard of insanity. I had the best intentions of protecting my daughter and my strategy worked. She is safe from her father’s insane demands. My grandchildren are safe from Riley’s absurd antics. But what is left in the wake of my success? It is not a pretty sight.

I’ve gained 50 pounds since June of 2009 when I first took Riley back into my house. I’ve had a stroke, a mini-heart attack and have been diagnosed as diabetic.  I blame the excess weight and my lack of exercise for my health. Each morning I endeavor to do something, anything, just one thing, that is healthy for me. Sometimes I’m successful, other days not so much. I know the stress is causing me a lot of harm. My headaches are more frequent now and the tiredness is continual. But, I tell myself – it will all be over soon.

So who is the crazy one? Riley gets waited on hand and foot every single day. Like a king on his throne, he sits in his rocking chair and tells me what he needs/wants. I cook him whatever he wants (in hopes of him actually eating it). The den TV is set to the channels only he wants to watch. There is no reason for him to move from that spot. He wears diapers now, so he doesn’t even make an effort to get to the toilet on time. He sleeps as often and for as long as he wants and if a noise should happen to wake him, he will demand to know what is going on. I jump to calm him down – I do everything I can to meet his demands. He has the Life of Riley. I’m crazy to be his servant and make it that easy for him. I’m the crazy one.

I can control him, at least, for short periods of time. If I threaten to put him in a nursing home or a mental institution, he becomes more reasonable for a day. The next day he forgets the threat and we are back at square one. If I threaten on a daily basis, I fear he will begin to take my threat as just that – a threat. The reality is that I have been unable to find a nursing home who will accept him. And to put him in an institution would mean a long drawn out process – I don’t think he has that much time left.

For the past month we’ve had a visiting nurse. Riley likes her visits and he is always more agreeable for several days after. But, this is the last week we will see her. Unless I can get the doctor to request hospice, things will go back to the way they were before the visiting nurse.
Having the nurse has been great for me as well besides Riley’s improved behavior, she tells me about dangers she sees ahead. She’s not allowed to make a diagnosis or to predict any outcomes. But she does give me her opinion and answers my questions to the best of her ability by bending, but not breaking any rules.

Currently, the nurse’s concerns are about Riley’s erratic heart beat and blood pressure levels. The fact that he is constantly in pain in his entire right side, is an indication that he has had, yet another, stroke or even a heart attack.  He has swelling in his feet and legs from fluid retention. And – although he did not break his wrist in a fall, she suspects he may have broken his arm.

Today, I’m attempting to get Riley into the van so I can take him to the doctors. It will take some fancy footwork on my part – but I’m think that maybe I can do this. Once he’s at the doctor’s office, they will take another x-ray of his arm, do an EKG and probably more blood work. While there, I’m going to see if I can get the doc to order hospice. I’m hoping for a productive appointment.

As for me – each day I will continue to try to diminish my own craziness. That’s why I write this blog and support other caretakers through the OARS support group. I try to keep my focus on today which is only as bad as I let it be. I’m only as crazy as I allow myself to be. I have managed to reduce Riley’s collateral damage to only one person – ME – and I will not go crazily before him and leave him to expand is collateral damage circle. My new mission is to OUTLIVE him.