Wednesday, May 16, 2012

Just keeps on giving...

Riley is holding his own. He seems to be managing to keep death at bay for a while longer. The Veterans Administration has now taken over his case. Today he will be transferred to an approved nursing home where the VA will provide hospice care. This is good news for me because he will only be a 30-minute drive from my house rather than the 2+ hours to the hospital.

When Riley was admitted to the hospital, I relaxed a little. But, I was feeling under the weather and thought that I was just run down. I wanted to shut myself up in my room, but there has been so much to do with phone calls, arrangements, paperwork. Who knew that this would all be so complicated? I just kept plugging along and doing what I had to do.
Last Wednesday I was beginning to feel “flu-ish”. I wasn’t too concerned because I had heard that there was some kind of virus thing going around the hospital staff. It was a four-day thing and I assumed I had gotten it. Four days. I’d be miserable for four days and then it would be over.

When we were in the room with Riley we needed to be completely gowned and gloved. We were told it was because of germs. Uhhhh… yeah… kinda thought that but didn’t push for a more detailed answer.
By Friday I was really sick. I counted back and decided I’d be better in just a couple of days. I rested over the weekend thinking I would start working on my task list first thing on Monday. But on Monday I was no better than I was on Saturday. Now I was getting worried. It was time for me to do some research and ask my most trusted knowledgeable friends for their opinions.

There was some concern. Riley had previously been diagnosed with alcoholic hepatitis. I have had salmonella. I’ve been cleaning up after his bodily fluids for quite some time. It was possible that I had not been cautious enough during the clean ups. Now I was doubly concerned about the possibility of hepatitis. I went to the emergency room.

The ER was quiet. I was the only patient at the moment and that meant I got a lot of attention. The doctor took his time and actually remembered Riley being in there just a week prior. He told me that I most likely did NOT have hepatitis, but that since I had been exposed for so long, it would be good to run some tests. After a brief exam, he explained I was very dehydrated and needed to get some fluids into me. He ordered something for my tummy and headache. I lay back in the bed and waited for a nurse to start the IV.

I had drifted off a bit, but could hear a male voice saying, “Mizz Riley? May I call you Linda? I just need to get an IV started. I promise I’ll try not to hurt you.” I opened my eyes and thought I was surely in the wrong place. Looking down at me was a gorgeous face surrounded with long blonde curls. He had obviously spent some time in the sun. His bright blue eyes reminded me of my father’s. I must be on a beach somewhere rather than an emergency room. But the fantasy only lasted a moment when I was pulled back to reality as my eye-candy started searching for a viable place for an IV.

It took several attempts, but it was finally accomplished and a bag of fluid was now dripping into my arm. The lab tech came in and took some blood after failing several times to find a good place for extraction. Again, I could feel myself drifting off.

I could hear the ER starting to get more customers. There was an elderly woman from a nursing home that may have a kidney infection. Then a young girl who could not stop vomiting and then a man who became so weak while walking to the store, he had to call the rescue squad. It was interesting to hear the different stories and I was happy that no one had been hit by a bus or beat up by their spouse. They placed the newcomers at the other end of the examining rooms. I was essentially alone in my little wing of rooms.

The doctor and Blue-eyes came back in the room. Blue-eyes fussed around me while the doctor did some ‘splainin.

I had a gastrointestinal and upper respiratory infection which started out as that four-day thing that was going around. But, I was in a weakened, dehydrated condition. I had not been taking all my meds correctly and had been exposed to excrement.  Because I’ve had salmonella, I’m highly susceptible to stomach issues. All of that made my body the perfect place for that four-day thing to wreck havoc and breed and grow. There was no indication of any hepatitis – good news.

The treatment plan was for me to rest. I was warned that I was on the edge of being admitted. This thing can easily be upgraded to pneumonia or some other awful thing. So rest, have a BRAT diet (bananas, rice, applesauce and tea), pro-biotic yogurt, ginger ale, and lots of sleep. I was told NOT to visit Riley until I was well. I am NOT to attempt to clean either of the two rooms that may contain more of Riley’s nastiness. I was assured that this will be over in less than a week if I follow his instructions. I said I would.

He further explained that alcoholic hepatitis – while it IS contagious – it is the very least contagious of all the types. It would be highly unlikely that I would get it from Riley. Besides I take proper precautions when cleaning up after him. However, it does not hurt to have the vaccine and be tested every so often. Also, I should be tested for TB. He told me to wait until I’m over this and make an appointment with my primary care doctor. Don’t know why he wanted to wait, but I didn’t argue.
He also warned – again – that I needed to be extremely careful not to let myself get dehydrated. Also, to always stay aware of salmonella possibilities. Since I’ve had it once – it can keep on giving me issues for the rest of my life. Ahhhh… an end-stage alcoholic caretakers nightmare – salmonella and it just keeps on giving back!

While I was at the hospital, Alea had been fielding calls from the hospital, hospice, VA, nursing home. Some refused to give her information and others gave her details of what they needed. I was so very grateful that she was there.
Today, I know I need to rest. However – Riley is being transferred to the nursing home and I must go sign papers for his admission. It’s rainy and would be perfect for just covering up and sleeping. But, I have to go out. I’ll go and get it over with. I’ll be back before long and then – I’ll be in bed with my covers over my head.

Saturday, May 12, 2012

What death looks like...

He was about 5’7”, wavy brown hair and big brown eyes. There was some meat on his bones, but he was not at all overweight. He just wasn’t thin. He had a huge smile that make you want to smile right back. He was intelligent and could talk for hours about the planets and prospects of life. He was cultured and went to plays, operas and the symphony. He always seemed to fit in, no matter where he was or who he was with. That was then.

Today he is thin. His grey hair is matted against his head. He can only open one of his eyes at a time so slightly that I wonder if he sees anything at all. He is crumpled and slumped as he lies in his bed. His frame is so small that his body almost looks childlike. His skin is now the orange color of the sunrise and against the white sheets, he almost glows. He doesn’t know where he is. He must struggle to only say a word or two at a time. There is an odor about him that is so distasteful that it makes me back up when I get near him. This is what death by alcohol looks like. This is now.
Each time a person enters Riley’s room, the person must put on a flimsy yellow gown made of something like a fabric dryer sheet. Next the hands must be washed with hot soapy water and then gloved with bright blue latex gloves. When exiting the room, the outfit is torn off and discarded in the hazardous waste can. It is to protect others from any harmful bacteria that may be emanating from Riley’s body.

I was unable to go to the hospital yesterday and I probably won’t go today either. I’ve been sick with a sinus infection and bronchitis. My weakened condition makes it unsafe for me to visit. Riley’s weakened condition would make it unsafe for me to be in the room. I cannot return to the hospital until I’m well. Riley may not live that long. However, when I call his nurse, I am told that there is “no change.”
For me, yesterday is just a blur of coughing, headaches, nose-blowing, and sleeping. But, I know I will gradually get better. I know that I will wake up, probably tomorrow morning, and feel like doing something productive. This is just a temporary condition for me.

Riley’s condition is not temporary. It will continue to deteriorate until he is no longer breathing. He will not wake up a few days from now and make the coffee. Nor will he watch NCIS or talk to the TV. He will never again be the person who laughs out loud and cries when he hears the Star Spangled Banner. Instead he will lie in that bed and wait for the end. Since he does not believe in God, I don’t know what the end will look like for him. I pray each day that he will change his mind about God and be allowed into the Kingdom of Heaven where he can be with his parents, sons and all the other loved ones who have gone before him.
When Riley was more coherent, just after being admitted to the hospital, I told him he better do what the doctors requested if he wanted to reach his goal of living until he was 104 and be killed by a jealous husband. He responded with “I think I need to re-calculate.” It was the first time I had heard him acknowledge that he might not be immortal after all.

As he lies in the Palliative Care Unit, I don’t seem to be able to find any words for him. I ask if he wants water or applesauce or pudding. But, for the most part, I have nothing to say to him. It’s as though I had a certain number of words in my word bag that was just for Riley. I’ve used them all up. Sometimes, I want to scream out – “I told you so!” But, what good would that do? I would gain NO satisfaction if he agreed with me. So, when I’m in the room with him, I struggle with talk of the weather. That’s about the best I can do.
Going through this alcoholic end of life thing, makes me want to plead with every alcoholic who reads this blog. Please don’t let Riley’s fate be yours. It is a miserable way to die. The family is so torn between anger and grief that they sometimes don’t know what to do. It is heart wrenching to watch someone as they fade off as a result of a slow suicide via alcohol – or drugs. It could have been prevented but if the alcoholic chooses alcohol over sobriety, they are sure to end up exactly where Riley is right now. Death is always traumatic, but don’t choose this route.

In the days to come, I will post before and after pictures of Riley. I’m not trying to expose his identity. I just want it to be very clear about what death looks like for an alcoholic. It’s not a pretty sight.
As soon as I’m over this creeping cruddy bronchitis, I will go back to the hospital. Maybe I’ll read to him from the Lord of the Rings just like he did for me when I was pregnant with our son. For Riley that will be a good way to go.

Thursday, May 10, 2012

The thrill of the chase...

Sometime during the night after Riley was admitted to the hospital, my JaxCatx brought in a bird and put it next to my head. I must have been starting to wake up because I could hear this little chirping sound. It was still alive. Jax would nudge at it and then look at me and meow. He was so very proud of himself with his tail all fluffed out and standing straight up. I thanked him and gave him some attention, disposed of the feathered treasure and tried to go back to sleep. Jax curled up next to me and, of course, had no problem drifting off into kitty cat snooze land.

The next night, I heard Jax pouncing around at the foot of my bed. I thought he had managed to snag another bird. I decided to wait until he was done before taking it away from him. I fell back to sleep. When I woke up, I found a mouse on my bed. Oh! I see! He had been hunting once again. I went through the routine of praising him and then used a tissue to transport the mouse to the trash.

Wow! Two nights in a row of successful hunting! I was impressed. I thought that maybe because Jade was not at home, it was easier for Jax to hunt. Jade might be scaring little creatures away before Jax could make his move. It seemed like a good theory to me. I was going that day to pick Jade up from my grandson’s house. I wondered if anything was going to change once she was home.
Now that Riley is in the hospital, Jade is quieter, calmer, better behaved. She sleeps at the foot of my bed and doesn’t try to get ON the bed. I used to restrict her from my room, but now, she is welcome.

Yesterday, I had been sick from all the running around, phoning, organizing, etc. I went to bed early because I knew that today I would make that long drive to the hospital and be meeting with doctors, social workers, etc. I needed to be rested.
I heard it. I heard Jax jumping – not pouncing – but jumping around the room. He was on the bed, down to the floor, into the bathroom, out of the bathroom, on the bench, into the closet, back on the bed. Then I heard Jade jumping around as well. What the #%^*#@  was going on??? I opened my eyes just in time to see Jade heading for the bedroom door with a frog in her mouth. Jax ran after her. Oh well… I would worry about it in the morning.

It is funny that if Riley were in the house, I’d be running after Jade trying to get the frog away from her no matter what the time of day. I would be worried that Riley was going to make a fuss and demand that I do something. I see now that I would have been nervous and determined to win the frog over from Jade. I would feel rushed and anxious. I would also feel a sense of guilt for not being able to control what Jade or Jax does at every moment of every day.
Since Riley has been hospitalized, I’ve found that I can do anything I want, when I want. I don’t have to worry about waking him up as he nods off in the rocking chair. I don’t have to consider what he will eat when I cook. I can watch TV whenever I want and not disturb him. I don’t have a constant voice reminding me that I need to buy pet food. And I don’t have someone calling my name from the other end of the house asking me to pick up the remote or hand him his slippers or get him a bottle of water. The only voice I hear is my own.

When someone asks me, what was he like at home? Why does it create such stress for you? It is very hard to explain. It’s so many things that it’s hard to pinpoint just a few. In fact, the few that I would end up relating really didn’t sound so bad. Then I would think “You’re such a wimp! That shouldn’t bother you.” The fact is that it isn’t just one thing. It’s a lot of little things that turns into a snowball of stress and despair. It is hard to relate to others, but there really is just too many to list.
Today I go back to the hospital and meet with more doctors and social workers. It will truly be a stressful day. Riley has asked me to make him some chicken noodle soup, but I got the message so late that it will not be possible. I know that when I return home, I’ll slump into an exhausted ball of tiredness. I’ll watch in amazement at the energy displayed by my pets. I want some of that. I want to be able to go to sleep and wake up feeling rested and ready to go.

OK. I confess… I want to join Jax in the hunt for something out in the back yard. It doesn’t matter what he is hunting for, just the act of having the energy combined with the patience of the physical activity of hunting. I want the thrill of the chase. I am trying to equate the chase of the little creatures to the chase of getting the hospital staff to follow through on the plans. Somehow chasing after doctors and social workers just doesn’t have the same appeal. It takes a lot of the same talents as Jax to make things happen in the hospital. But, running around in the yard is so much more satisfying than running around in the hospital.
So today, the chase is on again. Hopefully, I’ll be just as successful as Jax.

Sunday, May 6, 2012

Egg of life...

Over the past several years, Riley has insisted he would outlive everyone around him. “I’ll live til I’m 103 and be shot by a jealous husband!” That was his mantra. I actually thought he believed this fantasy. It would certainly explain his resistance to accepting anything offered that would truly expand his life. Yesterday the realization hit him that he may not make his goal.

Friday was spent getting the guest room converted into a safe place for Riley to spend the rest of his days. I put up a better, more accessible bed. Provided him with a TV and everything else, including a mini bar, right where he could get to it without shuffling through the entire house. He seemed happy with the new situation.

Very early Saturday morning, (about 2 a.m.), Riley called to me. I thought to myself “Boy, will I ever get a good night’s sleep?” I went to his bed and his breathing was extremely labored. He said he wanted me to hand him the phone so he could call the rescue squad. He wanted to go to the hospital. I hesitated – mentally weighing the options – and then went to get the phone.

I had always said I would not call 911 unless he asked me to do so. The hospice had been cancelled due to a half-point on his lab results. I looked at his body which had swollen since I told him good night at 10 p.m. His color was turning more green than yellow. I punched in the numbers.

At the emergency room, it was determined that he was having a “coronary event.” He was helicoptered to the heart hospital in Greenville. Once there, a heart catherization procedure was performed during which he had to be shocked twice. The results showed no blockage.

It was explained to me that Riley would most likely not return home, even if he survived. Without help there would be no way for me to provide him with the care he was going to need. Also, considering the shrinkage of his brain that was clearly shown in the CAT scan, he would never be able to function without assistance again.

A DNR was established. The doctor then gave me an order. He told me it was my job to go home and get some rest. There was nothing more for me to do at the hospital. If Riley survives the weekend, I was to come back on Monday to meet with the social workers and doctors. We would establish a plan of action at that time.

I had not slept for more than a few hours over the 24. I was worried about driving the 2 ½ hours back home, but decided I would rest best in my own bed. Last night, I slept from about 7 p.m. until 6 a.m. this morning. I still feel like I need a nap. But, it was good sleep. I remember waking up at one point when I heard a thump. My auto-brain told me Riley had fallen. Then I realized that he was not here and I immediately went back to sleep. What a relief it was to know I didn’t have to jump up and see if he was unconscious or bleeding.

It is also a relief to hear that he will not be coming home. On the other hand, I’ve heard that before and I truly, honestly do NOT trust those words. I’ve been right here in exactly this same place before and I am apprehensive about believing what I’ve been told.

Riley’s immortality is being tested. I feel like I’m standing on an egg that is yet to be broken. It must be an Ostrich egg – big and tough. This egg is large enough to provide me a firm place to stand, yet fragile enough to break without warning.  The egg is holding me hostage and I am not able to step off without assistance. I’m not trying to hatch the egg. However, there is an inherent sense of being protective of the egg’s contents. Inside the egg is Riley’s mortality.

I feel that I may be getting the assistance I need to step down from this precarious position. But, I don’t know if that assistance will hold me firmly as I take that step. I don’t trust that predictions will become reality. Will Riley’s mortality stay protected inside the shell? Or will the shell break and spill out? If it stays inside the shell, I will certainly need assistance. If it spills out… I can just walk away.

Thursday, May 3, 2012

Invasion of the pods...

Each time Riley detoxes and then goes back to drinking he embarks on a journey that ends up worse than the one before. The journey this time is so insane that it almost resembles science fiction.

In the movie “Invasion of the Body Snatchers” what appears to be an extremely large vegetable type seed pod is near a real live human being. When the human falls asleep the pod clones the human causing the human to die or disintegrate or something like that. I prefer the 1950’s version of the movie.

Anyway, sometimes I think the field behind me, which will grow corn this year, is really a pod growing farm. Only this time the pods are for situations rather than people. Each day a new pod mysteriously appears in Riley’s room. It kills yesterday’s situation and clones it with a worse situation.

Riley has a very large print (50” x 30”) that he has carried around with him for years. He loves that print. When we moved in I wanted to hang it on the wall for him. Riley insisted that it was so large, he would rather just lean it up against the wall. OK. It was his print and his wall. Yesterday Riley fell while he was trying to get into bed and hit his head on the print.

I heard the breaking glass. Then I heard “I’m OK.” Riley always says that immediately after he falls. Since I don’t come to his rescue anymore every time he falls, I just went back to watching Survivor. Then I heard… “Linda? Linda, call 911 for me.” I went into his room to get a closer look at the situation.

Riley was naked from the waist down. He as on the carpeted floor wedged between the wall and his bed. He was covered in large chards of glass. There was no way he could get up without seriously cutting himself. I put on my leather gloves that I used for handling firewood and hoped they would prevent me from getting cut. Then I moved the bed away from him to give me access. Gently I removed all the pieces of glass that I could without having them dig into Riley’s flesh. There were pieces of glass under his head and the side of his face. If he did not pull himself straight up, it was possible for him to slice his skin. I couldn’t remove them because I would have to pull them across him and would certainly create a deep cut.

The whole time I was in his room, he was telling me to just call 911. Each time I reminded him that I was not going to call the rescue squad. That no one was coming to help him. I told him to pull himself straight up and he would be away from the glass. But, he didn’t want to do it that way. He kept moving his head forward which created a sawing motion on the glass. Finally, I straddled over him and put one gloved hand on the top of his head while I moved the glass with the other hand.

There were still slivers and bits of glass, but there was nothing I could do about them. I told Riley he could get up now. “No! Call 911.” I repeated that he was not in danger, so just go ahead and get up like he always does. I left his room.

A little while later, I checked in and he was still on the floor. The carpet was dark where he had peed and pooped. He had pulled the sheet over his head and the upper portion of his body. I looked at the scene and thought, “Boy… those pods really did it this time.” I wondered what was in store for tomorrows entertainment delight.

This morning, Riley was sitting in his rocking chair in the den. As I passed by I said that he seemed to manage to get up without the aid of 911. I asked him how many times he thinks he might survive with a fall like that. He told me that he wouldn’t last long so he’s going to be more careful. He said I should have called the rescue squad. I told him if that was not going to happen. His plan is to start carrying one of the phones in his pocket.

I told Riley he would be spending a lot of time in the den today because I had to go in and clean up the mess he made in his room. He told me to just leave it. He said as long as he can get into his bed, he didn’t need it cleaned.

I confess. I lost my temper. “ARE YOU KIDDING ME??? You want me to leave the carpet with pee and poop and slivers of glass?” Riley informed me that if I cleaned it he would just mess it up again.  Why bother?

Riley is being moved into the guest room where he will have a hospital bed. He will have a TV and everything he needs so he does not have to roam the house. The guest room is larger and there will be room for the nurses to move completely around the bed. I’ve ordered a couple of those rolling trays that can go from short to tall. His rocking chair will be moved in as well. The room will be as self-contained as I can possibly make it. Hopefully his mess will also be contained. I guess I’m looking for a way to out-smart the pods.

The room Riley is currently using as his bedroom will be used as the guest room. In order to make it acceptable as a guest room, I have to clean every inch of it. I can’t use the carpet cleaner without taking the bed out of the room because the room is too small. It’s going to be at least a three-hour project just to do the carpet. As long as I’m cleaning in the room, it gives me the opportunity to get the feces stains off the walls and door jambs.  I have my work cut out for me. I’m armed with my Clorox Clean –Up, carpet shampooer and latex gloves.

I wish those pods would come and give me the body of a 24 year old, so I could have all the physical strength I needed to keep up with Riley’s messes. I guess they only work if they can make things worse rather than better. I wonder what situation they will create for today?

Sunday, April 29, 2012

Why... it's manure, my dear...

Sometimes, no matter how much we prepare ourselves for an upcoming event, it always comes as a surprise. Maybe not the event itself, but perhaps the realization that it is there is the real surprise. It could be the force of the impact when we know another car is going to hit you. Or it could be the loudness of the thunder when we know a storm is coming. No matter how much we prepare, no matter how knowledgeable, there is always that sudden realization – OH!! It’s here! It’s now!

My mother was an avid gardener. I wish I had her green thumb ability to make any plant spring to life from the earth surrounding it. For several years in a row, she turned a quarter-acre area of the yard into a vegetable garden. She would can and freeze the produce and advertise in the local paper to sell her home-grown goodies.

One spring, Carrot decided she wanted to get in on the action. She would help my mother with the gardening and they would share the fruits of their labor. It was a good partnership with a mother and daughter-in-law bonding over weed pulling and watering. Mom was an expert while Carrot was a garden virgin. It was OK because Mom was an excellent teacher.

My brother tilled the area and formed the rows for the hills of seedlings. It was early the next morning and both Mom and Carrot were ready to work in the dirt. There were several very large bags of what appeared to be potting soil along the perimeter of the garden area. Mom explained that they had to work small amount of the contents in bag into the soil.

Carrot asked, “What’s in the bag?” Mom replied that it was manure fertilizer as she handed Carrot a pair of gardening gloves. “Oh I think I can just use my hands, it won’t kill me, right?” Carrot responded. Mom said that NO, it wouldn’t kill her, but she would probably really rather have the gloves. “That’s OK,” Carrot insisted, “I CAN handle it.” Well… it really was Carrot’s decision.

Mom tore open the first bag. Carrot watched as Mom put both hands into the bag and pulled out the dark stuff, dropped some along the row and then worked it into the soil with her hands. The dirt fell through her fingers and fell back on top of the row. It seemed simple enough to Carrot so she put her hands into the bag as she had seen Mom do and walked over to the row where it was to be deposited.

Suddenly the realization hit her. Carrot’s eyes widen in horror. She stopped dead in her tracks. Her terrified eyes shot to my mother as she screamed out, “THIS IS SHIT!!!! That’s a bag of SHIT!!!” Carrot dropped the handful of manure and sped off to wash her hands. My mother broke into spasms of laughter so hard that she fell onto the ground and rolled back and forth as she peed her pants.

Carrot returned, put on the gloves and the two of them chuckled over the incident each time they put more of the manure into the rows. “I told you it was manure,” Mom said to Carrot. “But you didn’t tell me it was shit!” Carrot responded. Then they laughed some more.

The true contents of a bag of fertilizer/manure are well known to Carrot. She knows what constitutes manure. But, for some reason she did not connect the two in her head. She knew she was about to put her hands into a bag of manure, but didn’t realize it was a bag of shit. Even though she had the knowledge, she was surprised by the reality of it all.

I have written so often that I know what is ahead in the midst of the caretaking of an end-stage alcoholic. But, I’m wondering if when it comes right down to it, am I as ready as I think I am? I have the knowledge. I know what the reality is or what I imagine it will be. But, as the days approach, will I be shocked by the loudness of the storm’s thunder or the strength of the impact from an on-coming vehicle? Have I realized that manure is really just a bag of shit?

Riley goes on each day as though nothing is different from the one before. He knows there’s a bag of something off in the distance. I don’t think he knows that it’s manure and would probably not equate that to being shit. He sees no end. He thinks nothing has changed.

I see the bag too. For me there are two elements inside – fertilizer and shit. The shit is the reality when he is walking out the door of life and I’m witnessing the departure. The pain of watching a life end via a slow suicide may be too much for me to stay in the room as it happens. It will be a true test of my faith that God has made the choice for Riley and not really Riley himself.

The fertilizer is the part that sets me free to grow and continue on in a life that has taken a new direction for me. It will help me laugh and sleep and take better care of myself. Just like the little seedlings sprouting from the rows in the garden, I will stretch up and produce something that is, not just healthy for myself, but hopefully for many others.

The truth is that the process has already begun. My fertilizer has been all my followers, commenters and members of the OARS group. I’m not sure I could have even made it to the garden if it had not for them.

Wednesday, April 25, 2012

Abandoning the abandoner...

Yesterday I commented on a comment to my “Run for the Hills” post. I was hasty. I should have waited for the commenters words to trickle down before I wrote what I did. I won’t take it back. It’ll stay as a comment to a comment. But, I think there is some ‘splain’ to do.

Let’s break this down:

ABANDONMENT versus RUNNING  AWAY

In my opinion, I cannot abandon someone who doesn’t want me around. That’s not abandonment; instead it’s granting them what they want. How many times have I heard Riley say “Just leave me alone?” If I walk away when he says that, am I abandoning him? I don’t think so. Recently I have been giving him what he has so vehemently desired – to be left alone to drink himself to death in the manner of his own choosing.

The hard truth is that I abandoned Riley more than 15 years ago when I walked out the door after he abandoned me and his children many times over the years.  He would disappear for days or sometimes weeks, no phone calls, no note – just gone. It didn’t matter if our family was in crisis or some other life changing event was taking place with the children – I could never depend on him to be there. There always had to be a ‘Plan B’ in case he didn’t show up for an event that required his presence. As the kids got older, we stopped planning on having him around for Thanksgiving dinners or family vacations.  Our Plan B changed to one of if he DID show up rather than he didn’t. Riley has a history of being the abandoner rather than the abandonee. This is not just my opinion; it is a hard and true, honest to goodness fact.

In research I’ve done and through the OARS group, I have learned that abandonment is a huge issue for the caretakers of end-stage alcoholics. Throughout the years of drinking that leads up to end-stage, the alcoholic abandons the people who love them many times and in many ways. The alcoholic will become self-centered and being with loved ones drops off the priority list. Their personalities morph into someone we would not want inside our homes. By virtue of continuing to drink, the alcoholics abandon everyone around them in favor of a liquid mistress – alcohol. It may not be that way for ALL, but it is for MOST.

And what does constitute abandonment anyway? If I go away overnight to visit my grandbabies, is that abandonment? Do I abandon Riley every time I go to run errands and do grocery shopping which leaves him alone for about four hours during the day? Is it abandonment if I go to the mountains to recharge my batteries and renew my strength so that I can remain sane in the midst of this insanity? I don’t think so. When I take that time away from Riley, I am far more able to deal with his nonsense when I return. Doesn’t that benefit him?

Riley is at death’s door. Hospice will be here today to see how they can provide assistance over the next six months while we wait for nature to take its course.  The biggest downfall to being a caretaker is that the act of taking care of the dying person is extremely stressful resulting in stress related illnesses. That’s why it is important for caretakers to take that little break and run away from all the chaos for a short time. In fact, hospice often promotes these breaks and offers a means to make them happen. 

I do not feel guilty about planning a retreat or going to DC for the NIAA meeting in June. I do not feel guilty about going to visit my grandbabies. I do not feel guilty about wanting to have a life of my own even when Riley’s life is ending. Over the years, Riley has been told by everyone who ever knew him, that he will die a lonely old man with no one to hold his hand in his final moments if he did not change his ways. Riley didn’t change his ways. If he dies while I’m temporarily “running away” the prophecy will become fact.

I have compassion for the people who are in difficult situations in all walks of life. My two favorite charities are related to Duchene Muscular Dystrophy and Autism. But to ask me to have compassion for someone who only feels an emotional bond out of necessity is more than I have to give. I have shown far more compassion by providing Riley a soft, safe place to die than I would have shown if he had been left to die somewhere in a San Francisco Bay Area gutter. This Riley is not the man that I would lay down my life for as he was in a previous life. That loving generous man is gone and I’m left with a shell of a man devoid of emotion or empathy. I confess it’s damn hard for me to muster up any compassion for his situation.

We all come into the world by ourselves – unless we have a twin or triple or whatever – even then the trip down that birth canal only has room for one at a time. So we come in alone and we go out alone. No matter who is in the room, they are not going to accompany us into the afterlife. If we believe in God and Heaven, there will be ones who have gone before us waiting to ease us into the other side. It is not a place for us mere mortals. The only thing I can do in this life is watch him as his life ends. As Riley slips off, will I tell him I love him and will miss him when I know I won’t? You won’t hear those words coming from my lips. Riley lost that comfort when he stopped caring what anyone else feels.

Dr. White warned me that I might not be able to see it through when Riley is in the process of actually dying. He told me it is not a pretty sight. In fact, it could be quite disturbing. If Riley simply closes his eyes and drifts off, like my son did, his death will be a gentle passing. It is what I pray for every day. On the other hand, Riley could go into a seizure, bleed out and his passing will be extremely painful and the natural instinct in me will want to save him. It’s not a pleasant thing to watch and that’s another way that hospice can step in. If he goes via the route of horror, they can take over for me.  In either event, Riley will probably not even know if I’m in the room. If Riley passes while I’m on a retreat, to me it is God’s way of saving me from the pain of watching another human die. God will take him when God is ready. I see no value in the cessation of my life while I wait for Riley’s to end.

The question has come up -- Are my posts real? Is my blog real? I am just a human trying to make sense of insanity. Everything I write in the blog is absolutely real in my life. I write about how I see things and my opinions. I write about my experiences in my entire life. I do not use my real name out of respect for other family members who have asked me to remain anonymous. If it were not for them – I would even use my real identity. If it seems that  I vacillate from one idea to another, it is because as humans’ our opinions, ideas, and situations change. That’s the way life is. That’s the way I am.

However, there is more to my life than just what I put into the blog. There are parts of my life that you will never see here and maybe those parts would explain a lot for my readers. But they are in my book, The Immortal Alcoholic’s Wife. The book is completely written, except for the ending chapter. I’m struggling with that because I don’t know if it should end with Riley’s death or while waiting for his death. But, the book will show how I was groomed from childhood to be a caretaker. It details the romance between Riley and I which began my journey in Riley World. It explains how I learned what I have learned about alcoholism and shows the progress of Riley’s decline. It’s all there. I’m ready to bare my life to the world. I just have to get an ending.

A friend told me I was procrastinating. She says that the end doesn’t have to be with Riley’s death. She says that if I finish the book and publish it that I might feel there was no longer a need for the blog. She thinks that deep down, I don’t want to stop the blog and so I hesitate on publishing the book. I don’t know if she is right – but right now I have a need to keep reaching out and helping others. It’s what helps me make sense of the insanity. The blog will continue.

Tuesday, April 24, 2012

Head for the hills!

Last night, I dreamed I was on a tropical island basking in the sun while reading a book and sipping on one of those fruity drinks with a paper umbrella. Off in the distance was a huge green and white striped canopy tent. The mosquito netting hanging from the edge of the roof was gently swaying in the breeze. I was relaxed and the thought came to me that I was glad I had run away…

Wait!! Oh yeah!! This was just a dream. When I opened my eyes I was face to face with Jax. A timid “meow” was his way of telling me it was time to get up. I rolled over and closed my eyes again hoping to recapture that feeling of being in some faraway place. It didn’t happen. It was time to return to reality.

Everyone has their favorite “running away” fantasy. Mine would not be on a tropical island – but hey – that’s what my sleeping brain gave me at the time. I would prefer a secluded mountain cabin near a lake or creek. It would be fall so I could have the fireplace roaring with bright flames. It would be cool but not cold during the day so I could take walks amidst the falling leaves. I would have several books with me to read at my leisure. There would be hot cider and apples with cheese. That’s my fantasy runaway destination.

I remember when I was a very young girl – maybe six years old or so – I got angry with my parents and brothers for some misdeed that I felt was unforgivable. At six years old, that could have been anything from not getting the last piece of chocolate cake to having help with kitchen clean-up. It really doesn’t matter why I was angry, but I just was.

I had had all my six-year-old humiliation I could take. That was it. I was going to run away from home. I yelled the announcement to my Mom and asked her if I could use her suitcase. She told me I could have the case and then helped me pack a few vital items. Clean underwear, my toothbrush, my favorite doll, and some books all went into that case. I snatched it off my bed and headed out the door. My Mom, asked if she could have a kiss goodbye and I obliged.

Out the front door I went. I had no idea where I was going, but gosh darn it I had just had enough of living with mean people. I got to the corner where my street ended at the big truck-route highway. So which way should I go? Where would I go? I wondered what was for dinner that night or breakfast the next morning. I sat on my suitcase and thought about my next move. Then I picked up the suitcase, turned around and headed back home. When you’re six there truly is no place like home.

Riley runs away often. It has been his motis operandi for as long as I have known him. He has run away from every person he has ever loved from his parents to his children. It’s what he does. He has run away with almost every one of the women with whom he shared an affair. He has run way to and with friends and shipmates. He has also taken off to parts unknown as a lone adventure. He especially likes to run away when he is faced with a difficult decision or a decision he has made puts him into a position where he must take responsibility. I used to say he was the incredible disappearing man.

Not much has changed over the years. Riley is still running away. It is my understanding that for most alcoholics, the alcohol is a pain medication that helps them deal with something so painful in their past that they must anesthetize themselves. That in itself is running away. In Riley’s case he is about to take that ultimate runaway route. He’s running from something so pain that feels the only way out is death. I have no idea what is causing his pain. Many people, far more knowledgeable than I, have tried to figure it out and none have succeeded.   Whatever it is, it is something he can’t be honest about in order to get past or over it.

We all run away at some point in our lives. If we don’t run away physically, we do it mentally. It’s that daydream that we escape to in the middle of a boring day. It’s the vacation with the family after a year of hard work. It’s being in the bathtub and asking Calgon to take us away.  It’s when I write something fictional or when I write about some great, happy, memory from my past. It’s different things to different people. It’s a normal part of our existence as long as our entire life doesn’t center on the running away rather than reality.

I have a plan… yeah! Big surprise, right?!?... I’m about to run away. I’m going to find that mountain cabin and I’m going to spend a few days in solitary delight. Well… I won’t be alone. Instead I’ll be sharing the seclusion with members of the OARS F&F Group. It will be the first ever retreat for caretakers, family or friends of end-stage alcoholics. If this retreat goes well, it will be followed by others in different parts of the country.

Imagine that you’ve been dealing with a difficult end-stage alcoholic and had the opportunity to run away for just a couple of days. Just the idea of having people around you that have walked in your footsteps provides a sense of unity. I envision sitting down to eat at a table without worrying about what’s going to be said that will ignite a volatile response. I hear laughter as we relate scenarios that others would find horrific. When we are all piling in our cars to return to reality, I see phone numbers exchanged, hugs, tears and leaving with friendships secured in concrete by the similarities of our situations. Now that’s one super way to run away.

This inaugural retreat is being planned for the late August or early September. It will be either in the Smoky or Blue Ridge Mountains at the edge of the western border of North Carolina. Arrival will begin as early as Thursday and departure will be on either Sunday or Monday. I haven’t really thought about the agenda or even if there should be an agenda. This is, after all, a retreat from chaos and not a boot camp.

At this moment I’m not sure of what the cost might be, but I’m thinking it would be around $250 all inclusive. That’s not bad for four days of sleeping space, food, and great companionship. It would depend on how many people RSVP. I do think it would be good to set a limit as to how many people would be attending. Keeping the group small allows the development of more solid relationships. In my mind I’m thinking there should be no more than 20 attendees at any given retreat.

These retreats are only open to members of the OARS F&F Group. If you aren’t a member, join now so you can take advantage of this opportunity to run away. You must have a Facebook account in order to join. If you do not have a FB account you must create one. I have started building a separate website for OARS, but it is not up and running yet.

Riley came in and joined me as I was writing this post. He asked what I was writing about today. I told him it was about running away in a healthy manner. He asked me what I wanted to run away from. I told him I was running away from insanity. Then he looked at me with those quizzical big brown eyes in a sea of yellow and asked who was insane? I told him I was and that was why I wanted to run away. Occasionally, in the midst of all this, Riley says something profound… “You can’t run away from yourself.” He then left my office and as he was shuffling out the door, I wondered… when had he discovered that fact?

I can’t run away from myself. But I can retreat from things causing me pain so that I can recharge and renew which will in turn help me deal with the insanity that lives in my real world.

Thursday, April 19, 2012

Detour in the road...

My resolve to let Riley be “left alone” has not waned. In fact, it grows stronger with each day. I’m sleeping better and feeling much more relaxed. The best part is I’m making plans again for several different events. Although I’m recognizing that I’m angry – still – I’m happy.

Here’s how it’s been going:

On Friday I made my declaration of independence and informed Riley that since he wanted to be left alone – he was now alone. I would not do anything for him anything to make him more comfortable or assist him in making his alcoholism easier for him. I will no longer cook his meals, do his laundry, or clean his spaces. I also will not make or take him to doctor appointments of any kind. The only thing I will do is buy his alcohol because I don’t want him on the road putting innocent people at harm. He has clearly stated that he just wants to be left alone to drink as much as he wants even if that means drinking himself to death. That’s what I will do for him – allow him to drink himself to death.

Since Friday, I’ve cooked only for myself. I made myself some lovely meals and enjoyed them very much. Riley has eaten a Hot Pocket and a portion of a frozen dinner. He watched me as I prepared my apricot stuffed pork chop, but didn’t ask if I was making enough for him. The answer would have been NO!

I have not cleaned his bathroom and his bath aide is refusing to come because she cannot be in a bathroom where feces is smeared on the wall or floors. His diaper pail is overflowing and the door jambs have handprints created from unwashed hands. The trail leads to his bedroom.

In the bedroom, he has knocked over a short bookcase and the contents are now on the floor. His sheets have not been changed and when you look in you can see the bodily function stains. Dirty clothes are scattered about his floor and the room reeks worse than a locker room after a big game. A spray of Febreeze isn’t going to do the trick.

All in all things are going rapidly downhill for Riley. He’s on the downward dip of the roller coaster and I doubt it will make it back to the top of the next peak. I did not buy a ticket and refuse to get onboard.

After a discussion with the visiting nurse, we have decided that there is nothing more she can offer him in a skilled nursing capacity. All she does is check his vitals and since his butt is healing, there’s nothing left to do. She has offered to find out if Hospice would be an option for him. But, basically, she is as done as I am.

While the nurse was there for her last visit, she told Riley that it seemed that I had given up on him. Since he said he wanted to be left alone, I was granting his request. Riley became vehemently angry and said he didn’t mean it. What he meant was that he wanted to be alone WITH ME in some other place. We both asked him “Why?” He informed us he wanted me with him because I take such good care of him. When I asked him what my reward would be for taking care of him, he responded with “The reward is that she gets to be with ME.” Oh, dear me, I didn’t know he was so special that I should be honored to wipe his shit from the walls. What is the definition of narcissistic sociopath? Oh!! Wait!! I see it here!! Right next to Riley’s name!

I learned something interesting this week. I have been in touch with a former shipmate of Riley’s. This shipmate says Riley came to visit them 18 years ago. At that time, Riley told them I was killed in a car accident. Actually, I think I look pretty good for having been dead for 18 years!! But, shouldn’t I be much thinner? I don’t see a lot of fat on people who have been dead that long – usually they are just bones. As Mark Twain said – Reports of my death have been greatly exaggerated.

So – now that leads me to – if I am dead, I can’t do anything for Riley because I don’t exist. That greatly simplifies things for me.

Thinking back, I remember that I have been committed all along to not stand in the way of Riley’s death wish. I recall that I didn’t want any more heroic measures to keep him alive. That was more than a year ago. So when did things change? When did I get off track and things spin out of control? What was it that got me confused about my direction? As I recount the events of the past several months, I know exactly when it happened.

When Riley fell and hurt his arm, I took him to the doctor to make sure it was not broken. At that time I asked for a complete blood test so I could determine where he was on his road to death. When the results came back, he ended up in the hospital overnight having his potassium replaced. That’s when all this mess started.

People wanted to “help” Riley. They wanted to “help” me. The nurse alarmed me with Riley’s erratic heart beats which caused him to go back to the primary care doctor and then to the cardiologists. I grew weak from lack of sleep and attending to all of Riley’s needs. I knew I needed help, but the type of help I was offered was really only making things worse. What I wanted was one of two things – put Riley into a long term care facility or get a personal aide. My goal was never to get him to enter rehab and attain sobriety – been there, done that – without any success. I knew just detox alone was not what I was looking for if detox was not followed by placement in a long term care facility. Why detour him from a road that he prefers to travel and will end with an abrupt fall from the edge of a cliff? It is the same road he has chosen countless times over the years. Why not just let him reach the “dead end” sign as he is determined to do.

The cardio doc is right in that it will be a difficult road for me to watch Riley traverse. I’m not cut out for the role of Dr. Korvorkian. Observing someone die is so very distasteful for me. My every natural instinct is to try to save human life at all costs. But, how many times should a person be saved from death when they clearly have chosen to die? If Riley had cancer and had reached the end of all possible hope, then as difficult as it is, I would turn off the feeding tubes and let God take him away. That’s what I had to do for my son. I must see this situation as Riley having an incurable disease and that he has chosen his own end. I must let God deal with him and not try to interfere in his divine plan.

So this is what they mean when they say “Let Go and Let God.”

Tuesday, April 17, 2012

Just tell me what you want...

Yesterday, we were patiently waiting in the cardiologist’s office and Riley and we were talking about a couple that he had been friends with in the good old days. Those days weren’t so good for me because I was an outsider and the memories reminded me of being weak and senseless.

The conversation then turned to an instance of him choosing the couple’s family over his own. To make a long story short – I had just arrived at the new duty station. It was just a few days from Thanksgiving weekend. We found a house and Riley gave me money so we could move in right away.

When I went to pick Riley up from the base that evening, one of his shipmates gave me a note from him. It said he needed space to think about things. He said not to worry he would be fine. I was stunned. What was there to think about? He knew for weeks that I was arriving and sent me money to make the trip across country. If he was having doubts about us, why didn’t he tell me before I drove from California to Connecticut?

I had no money for groceries, let alone Thanksgiving dinner. I ended up getting food vouchers from Traveler’s Aid which would give us enough basic food for a few days. Our Thanksgiving Dinner that year was half a baked chicken, potato salad and pumpkin pie. We walked on the beach, watched TV and played board games. Alea kept asking when I thought her Daddy was coming home. Brain just kept telling Alea to forget about him and that he didn’t care about us.

It was not a far leap for me to figure it out where Riley was. He was with the Rittenhouse family celebrating Thanksgiving in a warm, food laden cabin with a roaring fire, laughter and children running about.

Finally, I worked up the courage to call the cabin and demanded to speak to Riley. There was an awkward silence and I could hear the shuffling of the phone. Riley thinks he’s very good at imitating the Asian accent – he’s not. He answered with that accent, but I knew it was him. I asked him to explain himself. He hung up. I called back. He hung up. I called again. This time a woman came on the phone and told me I was ruining their Thanksgiving. She could have said a million things – she could have told me the truth – ruining her Thanksgiving was something I was happy to do. My kids weren’t even having a Thanksgiving!!

The whole scenario got played again while waiting for the doctor. Riley recounted that Thanksgiving would have been one of the best he ever had if it had not been for me. He blurted out that it was inconsiderate of me to call while they were enjoying their holiday. He said he would have been home in a few days. If I had never called he wouldn’t have had to pretend he was some Asian chick.

I tried to turn off the tapes of the past that was running through my head. I reminded myself that I was happy that I put the past in a place where it could not interfere with the present. I reminded myself that I didn’t want any past misconceptions to change anything in the present time. I wanted only to move forward.

It was not the fault of the Rittenhouse family that Riley was a lying jerk. They had only extended an invitation to a friend when they thought that friend had no place to go on a holiday. They were like that. It was not their fault that the invitation would hurt me or my children. They had no way of knowing because Riley didn’t tell them the truth. It was clearly Riley’s fault. So as a result of Riley’s action (or inaction) everyone suffered including the Rittenhouse family. Over the past 20+ years, I’ve discovered a lot of lies that Riley told about his relationship with the Rittenhouse family just as he has told them a lot of lies about me and the kids. As his alcoholism progresses, he has trouble keeping his past lies straight and ends up letting the truth slip out sporadically.

But I guess I’ve never really healed from the past because I heard the words come out of my mouth – “Are you sorry that you hurt us that way? Are you sorry for the lies you told? Are you sorry your kid’s memory of Thanksgiving has always been tainted by that one holiday more than 20 years ago?”

His answer – “I’m not sorry for anything I have done or will ever do. I see no point in being sorry. I still would have done exactly what I did.”

My reply – “You don’t think it was wrong?”

Riley – “No. I don’t do “wrong” things. It may have been wrong for you, but it was not wrong for me.”

It was unfortunate that at the very end of Riley’s explanation the doctor chose that very moment to enter the room. He asked Riley if he wanted to quit drinking. Of course not. He then said he was going to have him committed as being a danger to himself and others. The doctor then turned to me and said – that will get him into detox but that is all it will do. If he is unwilling to go to a long term care facility, we cannot force him into one after detox.

The conversation was quick and forceful and I felt my voice disappear. In this day, it’s unusual for me to feel unable to speak. The doc asked how he gets his booze. I told him I buy it. He said that was good because he didn’t want Riley driving. The doc told me to decrease the amount of vodka in each drink. I told him I don’t fix his drinks – he fixes his own. He told me I had to start fixing his drinks and put a little less vodka in each one. That way, he can detox at home. I protested that Riley drinks throughout the night and that would mean I would have to be up to make his drinks all night. He said that’s the only way to cut him back safely.

This whole time, Riley is yelling – he is not going to stop drinking and unless he goes to a long term care facility that allows alcohol, he’s not going there either. He is yelling that he is going to live another 30 years and I’m going to take “most excellent” care of him.

The doctor is ignoring him. He is focused on me. So I just blurt it out – I’m not going to go through round five of detox to have him survive to make my life miserable for another year. I need help to just let him die!! It’s what he has said he wants – why not just let him have what he wants.

Riley’s voice fades to the background – “Nay! Nay! Moose breath!! I’m not going to die! I’m going to be shot by a jealous husband at the age of 112!” I vaguely hear the words because they are like background noise.

The doc gets quiet and says “I’m afraid you won’t let him die. I’m afraid you are not strong enough. You will try to save him because you are a loving, caring, humane person. You will try to do the right thing. He needs to be committed. But, I don’t think it’s going to do anything but prolong the inevitable. Tell me what I can do to help you.”

I tell him I need to have the nurse and bath aid continue visiting. He says he will make that happen and gives the order to the PA. He tells me to call and request anything I want and he will be happy to try to make it happen. With that, he leaves the room.

As I’m trying to get his wheelchair turned around, he looks up at me and says “I’m not going to die. You are being very mean. I hate you. I was right when I choose the Rittenhouse’s over you. See what you’ve done to me!”

I looked straight into his eyes and stated clearly. “You may not die, but you are killing me and when I’m gone, who’s going to remind you to change your shitty diapers? Do you think Susan will come do it for you? There is one thing I know – she is way too smart to put up with your nonsense. They left your ass before when your drinking got in the way – they aren’t going to take you in now. If it were not for me protecting Alea, you would be dead by now. I’m all you’ve got and I’m done.”

On the way home, Riley asked when I could take him to the dentist and eye doctor’s. He’s not in any dental pain and just wants and extra set of glasses. I pulled the car over to the side of the road. I think I was contemplating putting him out. Instead I grabbed my cell phone and turned on the recorder. I told him I had stopped the car because I wanted him to focus on what I was saying. I asked if he understood me. I asked if he could hear me clearly. I asked if he wanted to detox, rehab, long term care, continue to drink. I asked him to choose death or sobriety. He chose death.

I calmly told him, “There will no longer be any discussion of any type of facility. There will be no detox, no rehab, no attempts to prolong your life, no rescue squad, no 911, no ER. There not be any more doctor appointments of any kind – no dentist, no optometrist, no cardiologist. There will only be me allowing you to do what you want to do -- drink yourself to death. I will not stop him. This will be the last time I ask the question – what do you want to do.”

“I want to be left alone so I can drink as much as I want – the way I want. If I die then I want you to just let me die.” He replied.

My answer – OK. I’ll put together a statement that will be notarized with your signature. It will state exactly what you want. I will leave you to die in the manner of your own choosing.

I turned off the recorded and continued in silence. I left him struggling to get out of the van and up the steps into the house. I offered no aid, no arm to steady him. I went to my room closed and locked the door and eventually drifted off into a peaceful sleep.