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.

No more nurse...

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

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

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

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

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

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

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

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

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

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

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

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

Tornado repost...

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

Tornado warning… (5/3/2011)

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

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

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

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

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

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

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

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

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

And oh, what happened then was rich.

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

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

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

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

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

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

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

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

Balancing the seesaw...

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

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

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

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

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

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

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

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

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

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

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

I can take it...

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

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

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

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

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

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

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

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

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

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

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

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

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

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