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.

What was I saying?...

One of my readers sent me an article from The Star Tribune. When I read it I thought -- OH!! Yeah!! That's why I forget the end of my sentences. I always get so frustrated and irritated that my memory is so bad. After all, I'm not an alcoholic -- just a caretaker.

Stress eats holes in your brain

LESLIE BARKER GARCIA, Star Tribune, March 12, 2012.

After her husband passed away, Sandi Bond Chapman said she "could feel it immediately."
"For a year, I couldn't think," said Chapman, founder and chief director of the Center for BrainHealth at the University of Texas at Dallas. "I couldn't write a coherent word. I couldn't do anything. ... Stress is one of the best brain robbers we have."

This isn't merely figurative. According to a recently released Yale University study, stress causes the brain to shrink. So next time you're stressed to the gills and cannot focus, think or remember the ingredients for the meatloaf you make every week, you can legitimately blame stress.

"It's a short, easy story, actually," said neuroscientist and author David Eagleman. "Stress is underpinned by particular hormones that circulate through the body and the brain. Those stress hormones are very bad for brain tissue. They eat away at brain tissue.

"What's new to be stressed about is that stress is literally chewing miniature holes in your brain."
Not all stress poses a problem; our bodies are designed to combat stress by releasing the hormone cortisol. That response grew out of stresses such as, say, being chased by a tiger.

"The general story is that we evolved to have stress systems that are useful when you need a fast response," said Eagleman, director of the Laboratory for Perception and Action at the Baylor College of Medicine in Houston. "What we did not evolve for is chronic stress, that 21st-century stress that man and woman lives with."

Instead of a burst of a stress hormone, most people have chronically elevated levels, he said.
"The body is simply not built to have high levels of stress for long periods," he said. "That's where the stuff eats away at your brain tissue."

The frontal lobe has been identified as "the most critical to everyday functionality," Chapman said. "When you have the impact of stress, things that allow you to be successful will be impaired. You can't figure out how to juggle things, to set priorities."

That's one of four areas of the brain affected by stress. Robert Sapolsky of Stanford University calls the hippocampus "ground zero for stress doing damaging stuff."

"One definitely wants to have a functioning hippocampus," Sapolsky said. "It's all about learning and memory, the part blown out of the water by Alzheimer's disease. It's also the part that is most vulnerable to the effects of stress."

When that happens, "you get neurons dying, shriveling up and losing connections," he said. "It's all really bad news."

The Yale study asked 103 subjects about such everyday stressors as personal relationships and job loss. It found that stress affects areas of the brain that have to do with emotion and self-control, as well as physiological functions such as blood pressure.

"We already know this stuff isn't good for you," Sapolsky said. "If it takes a picture of your brain, seeing pictures of something smaller than it should be, to realize maybe you should make changes, that's great."

He added, "You don't need a picture to realize you're stressed and frazzled."

The definition and effects of stress differ. One person can shrug off what might totally undo another. Generally, stress is considered to come from a feeling of having no control.

"Most people are pretty insightful about whether they're stressed out," Eagleman said. "It's not an all-or-nothing thing. There are varying degrees. For some, their breath is shallow. With others, their muscles ache or their jaw hurts. ... It's important to read your body's signals, to figure out when you're having high levels of stress and structure ways to manage the stress."

When people do, they change, said Dr. Joel Holliner, a psychiatrist.

"When patients come in, we commonly see concentration problems, the inability to make decisions," said Holliner, chief of psychiatry at Medical City Dallas Hospital. "Over time as they get treatment, we see them significantly improve, to going from having memory deficits -- so many think they have dementia or Alzheimer's -- to having their memory totally back to normal. It's fantastic, absolutely."

To view the complete article go here: http://www.startribune.com/lifestyle/wellness/142338285.html

Crying wolf...

One of my favorite fables when I was a young girl was about the little boy who cried wolf. The premises is that a boy stood at the edge of his village and yelled to the townspeople that a wolf was about to do a lot of damage. The townspeople reacted quickly and ran to the aid of the boy to help him fend off the villainous four-legged creature. Each time, the people discovered that there was no wolf anywhere in sight. The child had lied to get everyone’s attention. The boy did this many times until the townspeople just starting ignoring his cries for help. Eventually, a wolf did show up, with its grey hairy face, and consumed the boy because no one came to help him as he cried out for help. The moral of the story for me was that I shouldn’t ask for help unless I really truly need it. Oh, yeah, there’s that don’t lie thing as well.

When an alcoholic asks for help and receives it and then goes out and starts the cycle anew – it’s a lot like the little boy who cried wolf. After a number of attempts, no one will believe that he truly wants help at all. Family, friends, rehab centers, insurance companies, and counselors begin to believe that the alcoholic is not being honest in his desire for help. It’s why an alcoholic will not be admitted to rehab after many failed attempts at helping the alcoholic achieve a sober lifestyle.

There are other ways that the boy who cried wolf analogy works. For end-stage caretakers we become accustomed to hearing medical professionals tell us that the alcoholic’s time on earth is coming to a close. We gather the family around and break the heart-wrenching news to our children. We take on a vigil of prayers for a miracle that will stop the dying process and give the alcoholic a profound desired for sobriety. We wait. We cry. We try to make deals with God. And finally, we believe that God has heard and granted us our wishes because the alcoholic miraculously revives and comes back to us. It appears that the doctors have cried wolf when there was none in sight.

After a few weeks, or months, we discover that only a part of the prayer was granted because the alcoholic goes back to drinking and we find ourselves back in the hospital waiting room.  Once again we gather around and things play out much the same as the previous hospital visit. And once again the alcoholic survives and remembers nothing of the ordeal. How could he/she? They were not “in the present” when the crying, hand-wringing, praying and pleading took place. The wolf never appeared.

This can go on and on for years. The doctors cry wolf and then the wolf turns out to be nothing more than a little bunny rabbit hopping along his trail with no intent to harm. Finally, the family stops coming when the wolf appears to be near. They stop praying and crying and pleading. They stop going to the hospital. They begin to believe that the alcoholic is immortal. Even if the wolf showed up, he would not gobble the alcoholic up and cause any mayhem at all.

We, the family, get to a point where we stop believing what the doctors say. How can we believe what has turned out to be untrue so many times? We are the townspeople and the doctors are the little boy. The wolf represents death and it just doesn’t seem to really arrive.

That’s where my family is with Riley. We keep hearing that Riley’s has used up the last of his nine lives, but then it doesn’t seem to be turning out that way. In fact, my daughter comes out and says that she doesn’t believe anything the doctors tell us about Riley’s life expectancy. She observes how he looks from the outside and in her eyes; he’s not even as bad as he was when he had the stroke. So she believes she’ll be able to tell how close he is to the cremation urn using her own measurements.

I have received lots of comments about what a difficult time this is for me and I’m in everyone’s prayers. I am so appreciative that I have so many people who wish I weren’t going through this.

It is unfortunate, that my pain is not so much for the loss of Riley as a companion, but the fear of losing myself as I try to juggle all the details. I make the mistake of trying to make decisions based on a sensible outcome. But there is no logic to any of this. I will probably get to the place where all the paperwork is done, all the arrangements are made and there is nothing left to do but wait. I’ll probably end up waiting for years and the wolf will never appear. By the time he does show his face, what if, because of the stress, the wolf is at my door long before he shows up at Riley’s?

I know that I’m falling into a depression. I am very lucky that I recognize it and can take some positive action to fight it. I also know that the townspeople are on their way to help me. They aren’t really coming to help Riley, instead they will be there for me whether Riley is there or not. I’m grateful that I learned the lesson of the little boy who cried wolf by not crying out for help so many times that I have become unbelievable.

My depression is countered by putting as much focus on my many projects as I can. Oh – but wait – one of the reasons I’m depressed is because I’m not spending as much time on my projects as I would like. My time is being taken up by preparing for a wolf that may never show up. Sometimes the frustration is more than I want to handle. It’s not that I can’t handle it – it’s that I don’t want to.

My mother had a little book that had been given to her from a beloved family member. I don’t know who – but someone. She gave me the little leather bound book one day when I was complaining about not having anything to read. It was her book of fables. I have read that book from cover to cover many times. It is well worn. It is well loved. It is something I will pass down to my great-grandchildren when the wolf is, in fact, stalking me. My hope is that they will learn and live by the lessons in that little book.

In the meantime, I’m going to read through that book again and see if there’s a fable that will help me with doing things I need to do even if I don’t want to do them. There must be something in there…

Don't talk to me until...

Morning coffee is one of my favorite things. I love everything about it – listening to it brew, smelling it and that very first taste which signals my brain to wake up. I’m not mean without my coffee, I just am not really awake until I have my first few sips.

I can drink it black, but I prefer real cream and sugar. Although, I’m not opposed to Splenda, or brown sugar, but the cream… well… that’s a different story. It must be cream. Not milk. Not Cremora. I want real live cream. It can be heavy or regular cream, as long as it is cream. OK. So, mostly I use half-n-half, but that’s only because it’s cheaper.

My family says I’m a coffee snob. I like dark roast and my very favorite is Dunkin’ Donuts Dark Roast. My next fav would be Starbucks Caffe Verona. In the interest of my budget, my daily grind is Folgers’ Black Silk in order to keep the budget happy.

Riley used to join me for that first cup-a-day, but no longer does. He sets up the coffee every evening and puts out two cups even though only one cup will be used. I’m surprised that he doesn’t fill the cup with vodka and then top it off with coffee as his mixer. That’s what he used to do, but now the coffee never reaches his lips. By noon his lonely coffee cup is put back into the cupboard just to be brought back out the when setting up for the next morning.

Morning coffee is only one of the things that has changed in Riley’s repertoire of culinary delights. I asked him to help me make a list of his favorite dishes. It was quite a long list and he has added to it since it was first created. He’ll be watching television and shout out “your most delicious pot pies!” and I’ll put it on the list. The list keeps on getting fatter and I don’t mean just in numbers, but in calorie count – Banana Cream Pie and Fudgy Deviled Food Cake. I’m not worried about the calories, why should I deny a dying man his last piece of pie?

I have been concerned about Riley’s eating habits because, like most end-stage alcoholics, he has a habit of not eating much, if anything at all. My thought was that I would try to make some of his favorite things as an enticement for him to actually consume the food. I have started making him breakfast every morning because I know he will usually eat about half of what I make for him. If he doesn’t get any other nourishment down all day, at least I know he has had something.

Cooking is something I enjoy. It’s a stress-reliever for me. When I’m cooking I’m concentrating on what’s going on in the kitchen and anything outside that gets dulled by my internal dimmer switch. Some days are harder to dim than others. But when that switch works I feel as though I’m cooking my way out of the chaos. And the good part is that Riley really doesn’t bother me too much when I’m tapping into my culinary creative side. Maybe he knows that the end result will be something he will enjoy. Maybe there is still some sanity left in that part of his brain. Whatever it is, I’m grateful for it.

At first things were working well. I made Cream of Sun Dried Tomato Soup, Barbecued Beef Brisket, Chili, and Banana Cream Pie as dinner (and dessert) a couple of weeks ago. He ate a serving of each. Then he started tapering off. He only ate about three-quarters of a serving of Broccoli Cheddar Quiche, Chicken Curry Casserole. Yesterday he asked for Pork Chops and Sauerkraut, but he never touched any of it. It was transferred to a storage container which he took out of the refrigerator several times, but never made it to the microwave. Tonight I’m making Moroccan Lamb with Cucumber Salad. Maybe some of it will reach his stomach along with the Tapioca Pudding I’m making for dessert.

Sometimes I think I’m foolish for going to all the trouble to make these time-consuming recipes. However, I benefit twice for my trouble – I am in my cooking sanctuary AND I get to eat the food! That’s a win-win for me and could be for Riley, if he would only actually eat what I cook.

I understand that at this stage of alcoholism, Riley’s first priority is not what is on his dinner plate. He just wants to make sure his drink never goes empty. When he does eat, often what he gets down comes back up. I’m not sure I’d want to eat either if I was faced with that prospect.

It doesn’t matter to me that when the meal is complete and I have prepared him a plate, the plate sits on the TV tray next to his rocking chair until he wakes up and decides to take a few bites. I always cover the plate with a lid that keeps Jade from sampling what’s there. When Riley stumbles his way into the den and proceeds to have his dinner, he only takes a few bites. The plate gets up on the counter and he will sometimes pick at it throughout the night. I suppose that’s OK, but often Jade will manage to get to the plate and -- wah-la --  the food is gone! Then Riley will insist he was the one who cleaned his plate. One day, I walked in to find Riley feeding himself a bite as Jade was helping herself to her own bites! Oh well… it’s impossible for me to expect him to comply with my request that Jade NOT have human food.

When our daughter was about four years old, she was a very finicky eater. Her brother, on the other hand, would eat anything and everything on his plate. But, Alea was sneaky. We had a little dog whose head was just at the height of the dining room chair. Alea would put bites of her food just on the edge of the chair and the dog would come up and eat what she had placed there. For a long time, I thought she was eating her dinner. I don’t know how long she had been giving her food to the dog by the time I found out. Riley giving Jade his food always reminds me of that situation with Alea and although I’m frustrated – I have to admit that I do smile.

Riley is not four years old and just avoiding eating his green peas. He’s an adult who has the mind of a child. It’s part of the dementia resulting from having a brain that is bombarded with ammonia over and over again. Yesterday that child caused me to start my day in an unpleasant manner. After a very small cup of coffee, I went to the kitchen to refill my cup. It was only 4:30 a.m. but the pot was empty. It was not just empty, the pot was neatly put back into its place on the countertop. WHAT!! Where was my coffee!!

“I thought you were done with it,” said Riley with a quizzical look on his face. He looked like an innocent child who was just trying to help. It was the same look he had when he threw away the whole half of a Prime Rib Roast because he couldn’t find a storage container big enough to hold it in one piece. The roast was a planned left over that would get me another meal. It’s the only way I can justify the cost of such and expensive meat.

“I only got one cup,” I replied as I began to make a fresh pot. Oh well… since I had to make another pot, I took out the good stuff. As I listened to that pot and smelled the strong coffee aroma, my frustration melted away. Ummmm… I pretended it was my very first cup of the day. Riley’s child-like behavior allowed me a do-over morning. It’s another little thing for which I can be grateful.