No longer sequestered...

I just spent the past week in the Outer Banks of North Carolina. The time spend with my grandkids and great-grandkids is priceless.  However, this visit was a bit more stressful for me.

Whenever I visit, I always think to myself that I can maintain all my communication and contact with my readers and OARS members via the internet. My left-coast family and the Riley’s nursing home/staff always can reach me via my cell phone. I’m not cut off from the world. I’m still here.

The only problem with that scenario is that the kids’ internet access was not working. They usually have free public access as a benefit for living in a resort community. But, for some reason it was not working. I packed up the laptop and went to the local MacDonald’s where there was always free wi-fi. But I got zip. Nada. Nothing. I spied another person on their laptop and asked if they were able to connect with the web. She told me she hadn’t been able to connect no matter where she was on the OBX. Oh! Well… this was not good.

After a couple of days the frustration seemed to fade away and I was able to relax and not be glued to the computer. It was actually rather pleasant. I was worried that my readers might think I had abandoned them, but realized that this was just a way of having a forced vacation.

I played hide and seek and build forts out of sheets and dining chairs. I cooked dinners that contained all four food groups. My great granddaughter went out looking for houses. I watched a countless number of Storage Wars with my granddaughter-in-law. I focused only on those days and I didn’t seem to worry much about what was going to happen when I went home.

There was a down side to my visit. I had taken Jade with me because I had no one to check on her at home. I had no dog sitter. She loves an adventure, so she happily jumped into the van when I called her. She was even happier when I made a stop at the nursing home so she could visit with Riley. She climbed right into the bed with him and gave him doggie kisses all over him. Clearly, she had missed him and was happy to make the reconnection. So far so good…  I thought.

The kids live in a typical beach box with is just a bit larger than a three bedroom apartment sitting on top of pilings. There is a yard, but it is not fenced in. They have a dog of their own – a sweet grey dog about half of Jade’s size.  He’s a little boy named Bently who is really still a puppy, so he’s full of energy. Bently walks on a leash and also does his business on a designated area of the deck. He’s a good boy. But – he is not neutered yet and thinks Jade, who lost her puppy-making-equipment  several  years ago, should be his girlfriend. Never mind that Jade is twice his size and totally not interested – Bently loves her. Bently wants her. Jade tolerates him.

Jade was pretty good about using the deck, but she would often go to the door and ask to go out. She’s 65 pounds and is not well trained in leash etiquette. She pulls as I try to walk her and I’m not strong enough to keep her under control. As a result, her outdoor time was limited. Indoors, she would play with Bently until she would get tired of his unwanted advances and then snap at him. They would both settle down for naps when Jade made it clear she had had enough. Jade is very patient with the little ones and allowed them to pull on her ears and give her hugs.

I can image the frustration Jade felt from being cooped up in a relatively small space with no freedom to run the fields or chase after mice, rabbits or birds. I equate her frustration to being similar to what I feel when I’m cooped up in the house with Riley for weeks on end. I can also see how it would be similar to Riley now being in a small nursing home room rather than the big space he had in the country house.

Now I am faced with giving up this country home and moving to the OBX. I know it will be a move that will make me more accessible to the kids which is what I want. As much as I dislike living in the OBX, I know it will be good for me. However, this will be a challenge. Rentals are scare here at this time unless, of course, I want to pay $3K for a place right on the beach. I must provide a place for Jade to have some access to the outdoors. There must be room for Riley if he should be able to return home. And I prefer it to provide some privacy and not be on pilings. It’s a tall order for that area.

For me, this move will mean I’m no longer sequestered in a remote area. As much as I love it here, I love my family more. All of the space out here, creates a similar frustration as Jade being coped up inside my grandson’s house. The loneliness of the open space makes it feel confining.

If I could pick up this property with the horse paddocks and open fields and transport it to Kill Devil Hills, none of us would feel confined or restricted. It would be the perfect situation. Even Bently could come to visit and chase Jade all around the paddocks. He’d never catch her – but he’d certainly have fun trying.

Am I an alcoholic?

I received this e-mail yesterday and I thought I should respond openly so that others may have the benefit of my response. I want to emphasis here that I’m not a professional anything. I’m also not an alcoholic and so my viewpoint is from someone who has not had the painfully gripping experience of addiction. That is – except for my morning coffee.

Hi Linda –

 I've been reading your blog for probably a year or so now. I don't recall how I stumbled upon it exactly, but I immediately took an interest. I'm 24 years old and I'm working on figuring out the extent of my problem with alcohol. I identify with a lot of what you have written in your blog, enough so that it causes me to worry about what the future may have in store for me if I continue along my current path.

It's certainly been addressed to some extent in what I have read in your blog, but I'm curious about Riley's history with alcohol. I would like to know how he got to where he is now. I'm very curious how much drinking it takes to wreck the havoc upon one's body that it has in Riley's case. How long did he drink and how much? I realize this may be a somewhat nebulous question, but as I read your blog I always find myself wondering how much does it take for a person to end up like Riley has.

As well, if it's not too difficult or personal to discuss, I'm also curious about your son, and his drinking in contrast to Riley's and the fact that Riley has some how managed to survive despite all odds.

If this is something you would like to post on your site I have no problem with you sharing my email.

Thank you.

Steve

In one of the pages on my blog, I write about the different stages of alcoholism. For the most part, Riley’s drinking route follows that road map. In my opinion, Riley’s alcoholism kind of snuck up on him and once it was there it was a permanent resident. I don’t know if it is that way for most alcoholics, but no one ever says “I’m going to start drinking booze until I become so addicted that I cannot live without it.” No one has ever made a conscious decision to become an alcoholic.

Back in the Navy days of the late 70s and early 80s, alcohol was an accepted form of beverage at recreational activities. There were “beer ball games” and “initiations” and “balls” and “cook outs” – and getting drunk was a pretty accepted way of celebrating. In Riley’s case, when the recreational time was over, he had difficulty making the transition back to serious work mode. While others were able to put aside the beer and wine, Riley was hooked on the euphoric feeling of drunkenness. I don’t know of ANYONE in Riley’s group during the late 70s and early 80s who became alcoholics from all the carousing that was done during that time. There may have been – I just don’t know about it.

So, for Riley, I believe it all started honestly enough. I think he truly believed he was not an alcoholic, but thought he was able to maintain his askew mental state by drinking small amounts each day. The only problem was that as he continued to drink, he was unable to drink in large enough quantities to keep up the desired “high” that he no longer wanted – but, in fact, needed.

Brian, on the other hand, follows a different scenario. In his teenage years into his early twenties, he did all the experimentation that parents frown upon. Alcohol did not seem to be something he was most interested in – it was other drugs that called his name. But, fortunately, he out-grew that craziness and went on to a wonderful job travelling the world and enjoying his bachelor life. He became a rational, responsible young man.

Alcohol did not become a part of his life until he became involved with a woman who was an alcohol abuser. To make a very long story shorter – he ended up quitting his travelling job and trying to settle down with this woman to whom he lost his heart. His life was never the same after that. He joined her in drinking and was often as drunk as she was.  That relationship ended, but the drinking remained.

It was only three years later, that Brian’s new girlfriend tried to communicate to me that his drinking had become a problem. In my opinion, she didn’t try hard enough to make me understand what was happening. I heard bits and pieces of things – innuendos and comments – but nothing that would alarm me to take a more proactive stand.

Less than one year after that brief communication by his girlfriend, my son was dead. 

The bottom line to all this is that there is no true and correct answer to the question of how long it will take for the alcohol level to become so high as to cause death. The style and progress of the drinking doesn’t really matter. The end result is the same – death.

Steve – my suggestion to you is to honestly look at your drinking and why you are imbibing. If you’re trying to maintain a certain level of “float-y-ness” then you are certainly on your way to a life of craziness. The fact that it is disturbing to you is also a cause for concern. Ask yourself this – is drunkenness the goal of a social function or is the goal enjoyment of family and friends? Would you decline an invitation to an event that doesn’t include alcohol? Do you leave the non-alcoholic event just to find the nearest means of getting drunk? If you are drinking at lunch or going to happy hour every night – you have a problem.

No one can say for sure if someone else is an alcoholic. Only you can make the determination. But, before you decide you are NOT, maybe you should go to a few AA meetings and talk to the people there. OR just listen -- you don’t have to say anything. The meetings are free and they are taking place everywhere.

One more thing you can try – just stop drinking. After a few days you will either be anxious to find a drink or you will not really care one way or the other. But, this is a dangerous precedent because often alcoholics say “I’m not an alcoholic because I quit drinking for (X number) of days and I was fine.” But, if that alcoholic returned to drinking and increased the intake – well – Houston -- there is a problem.

There is an excellent book named “Almost Alcoholic” that may help you. I’m not sure if it’s even been released yet. It was sent to me for review. The authors are Robert Doyle, MD and Joseph Nowinski, PhD and the book is being published by Hazelden. It was supposed to be out in April 2012. I think it might answer a lot of questions for you.

In my opinion, if you have the slightest little inkling that you MIGHT have a problem with alcohol – then stop drinking. If you find out you can’t stop – seek help. Do it now. Don’t wait until you’re under hospice care in a nursing home and think that you spend each night in the back of a truck at a residential fire. Don’t wait until you have no idea where you are or where you live or the names of the people who visit you. Don’t wait until you end up like Riley.

Life in Riley World...

The nursing home called me late Thursday evening. In fact, they called me twice. Riley had fallen out of bed two times and they needed to inform me of that right away. He was not physically hurt. It’s not clear if he simply rolled out of bed or if he tried to get out of bed. They no longer use bed rails in the home because patients try to climb over them and hurt themselves. So they have placed soft mats all around Riley’s bed in case he falls again.

If any of you get cards returned to sender, it is because the nursing home had a little “snafu” last week. There was a temp on the front desk and no one had informed her of Riley Riley being a patient. If your card was returned, I apologize. The situation has been resolved and if you want to try to send it again, the card WILL get to Riley.  He truly enjoys getting these cards and even asked me to read Syd’s card to him twice. Thanks Syd!

So… when I visited Riley on Friday morning, I asked him how he was feeling after his fall out of bed. He responded with laughingly telling me he had been forced out of bed by the baby which hasn’t been born yet. I asked him if he was the baby’s father. He said that Tom was the father. He proceeded to tell me that he spent most of the night in a truck with two other guys. The two guys were able to get out of the truck, but that he had to stay inside because they were on private property and it would have been illegal for him to step foot on the soil. He said he sat there for more than three hours.

He was in a talkative mood. Riley told me that there had been a lot of sirens last night. He knew there was something going on because the green fire trucks were out. He said they were a puke-colored green and this was the only town he knows of that has them.  They have yellow lights instead of red. I asked where these fire trucks were from and he said “right here”. I asked where we were and he said Clinton, IA. Well… he’s only about 1,500 miles from his actual location.

I wanted to see how much he was really mentally here. I asked him who I was. He said I was his wife. I asked him what my name was. He hesitated and then said “Linda?” I talked to him about Jade and Jax, but he had no response to that subject. I don’t think he knew who they were. I told him I was going to move in with the kids for a while. He said OK but he didn’t want to stay in the country without me. So it seemed he was able to connect a few things accurately. He also told me that Janet (he meant Debbie), the nurse, told him that he may have to go to an assisted living facility. I asked how he felt about that and he said he didn’t know.

I promised his brother that we could try a phone call. I dialed the number and put it up to Riley’s ear. I don’t know how disjointed the conversation was because I couldn’t hear his brother’s end. But, when he hung up Riley explained to me that his brother had been snowed into his house for the past few days because the storm hit him hard. His brother didn’t know how long it would be until the snow plows would be able to get him out. That was interesting because his brother lives in the San Francisco Bay Area and there has never been enough snow on the ground to create any sort of hazard let alone enough to “snow him in”.

At the end of our visit, as I was driving off to run some errands, it occurred to me that Riley was getting better as far as his body was concerned. But, his brain function is way off. It was entertaining to talk to him. He didn’t take any sips from his imaginary glass. He didn’t ask me when he was going to come home. Mostly he was just in his own world and he seems to be enjoying it there. For some reason, it makes me feel better about the entire situation. Maybe that’s because he actually appears to be happy in Riley World.

Is he really immortal?...

I’m going to see Riley today. I’m wondering what I will find and if he will know that I really am there. Each time I visit him, he appears to be just a little tiny bit better than he was the last time I saw him. There have been no leaps of improvement. But still…

The liver is a miraculous organ. It can regenerate new cells to replace the bad ones. I’ve seen this happen with Riley several times. I don’t know when the liver degenerates to the point of not being able to regenerate enough cells to return to proper functioning.  I’ve talked to the hospice nurse and she told me that Riley has caused too much damage for his liver to be able to regenerate enough to be fully functional. The same thing goes for his brain.

This hospice nurse was assigned to Riley because she has experience with alcoholic deaths. While talking to her, I knew she understood concern. She carefully explained to me that it may take Riley a considerable amount of time to reach his end. Or he could have another heart attack and have it all end quickly. It really doesn’t matter because his brain function is so limited that he will never be able to return home. Fortunately, he is well-insured and is able to stay in the nursing home for as long as he is alive. He may be able to improve enough to go to an assisted living facility, but that would be a big stretch. She assured me it was time for me to move forward.

I suppose I’m a little gun-shy when I’m told that Riley is dying. He’s been dying before and has always managed to come back. I find it difficult to truly believe that he is not going to make it through this. I want to trust what I’m being told. I want to make plans for my future without Riley. But, I don’t call him the Immortal Alcoholic without reason. So… I guess… I must wait.

My fear is not that he will survive, but rather he will survive to a point where he might get discharged and sent home. He will never be able to live on his own again. I accept that fact. There is no place for him to go except to my house. I’m not physically or emotionally able to take care of him any longer – at least not with his inability to tend to his biological functions or inability to mobilize.

The best case scenario for both me and Riley is that he recovers to the point of being able to be placed in an assisted living facility or long term care. I have no reason to believe that cannot happen based on my previous experiences with Riley and death. The only thing preventing that is if Riley is capable of refusing that placement. I will have to firmly stand by my decision to not have him come home and not be his caretaker.  

Riley might not agree with me. He has stated a million times that he would prefer to be dead than to be sober. Who knows for sure? He always made those statements when he was in the middle of drinking. So now that he is in the condition that he is, how do I really know what it is he would want?

He wants to come home. Every time I visit he tells me that. He wants to sit in his rocking chair and talk on the phone. He tells me to make sure I turn off the TV in the den because no one is watching it. He tells me he wants to go to the living room and doesn’t understand why I can’t just push the bed in there. He wants his computer. In the few words I can really understand, I am able to understand all that. In between sips of his imaginary drink, he is clear that he wants to come home.

I feel that I cannot just sit and wait for Riley’s outcome. I’m taking the nurse’s advice and moving forward. I have given a 60-day notice on my country house and will move in with my grandson’s family for the summer.  I’ve already started on getting my health back by getting plenty of rest and taking all my medications as prescribed. I spend more time walking around the property and enjoying the beautiful weather.

There is a new job ahead of me. I’ll be looking after my great-granddaughter during the day. She is too old for day care and too young to be alone. I’m looking forward to spending time with her. I have lots of plans for little adventures. She will keep me active and alert. It will be a symbiotic relationship.

In the long run, I guess Riley’s condition really doesn’t matter anyway. Whatever is going to happen will happen without my consent, interference or management. It isn’t up to me. The only thing I can do is plan for my own future and not Riley’s – if he has one.

Do unto others...

I’m a big believer of family programs being offered when an alcoholic comes in for rehabilitation. I believe a solid program should be mandatory as part of the treatment plan. I also believe that any funding via government sources should be reduced if no family program is made available. I also believe that family programs should be covered under private health insurance policies that cover any alcohol treatment programs to the alcoholic. It seems to me that treating the alcoholic without treating the family is similar to removing a damaged appendix without closing the incision. It is a job only halfway done.

One of the misconceptions held by many caregivers or families of alcoholics is that there is some magic set of phrases or some formula that will prevent the alcoholic from returning to drinking. The reality is that there is no such thing. There is only a sense of “doing the right thing.”

I grew up with my grandmother always touting the Golden Rule. Whenever I was angry and wanted to “get back” at someone, I would hear her saying “Do unto others…” She had this keen sense of me wanting to kick over my brother’s truck or pour sand in his boats after they he had done some heinous thing like draw a moustache on my baby dolls face. She knew and she would softly say, “Do unto others as you would have them do unto you.”   Then I would see her scolding my brother and handing him a cloth to clean the baby dolls face.

Whenever Riley did something heinous to our relationship or to the kids, I always thought out ways to seek my revenge. But, I was never good at it. My attempts often were thwarted by my own hand. I resorted to reason and logic trying to use conversation to make him understand how insane his behavior was. I tried to get him to admit his wrong doings and often he did. He said he was sorry. He said he would try not to do it again. But, more often than not, the bad deed was repeated and I was left with frustration and anger.

I could always hear the words coming from my mouth – things like – he’s a disgrace to fatherhood or a miserable failure as a man or husband. I heard the words and I truly meant each one. But, in the back of my head was my grandmother… “Do unto others…” At those times I thought my grandmother, the strongest woman I have ever known, was just a wimp. I was not about to let some drunk get the better of me. I’d fix him – or tell him just exactly what my thoughts were at that very moment.

20/20 hindsight is a wonderful thing. I can clearly see now that I was not doing anyone any good. I ask myself now, what did I truly want? If I’m honest I would have to say that if he could not be the husband and father that I knew he could be, I rather he just left us. So, if that was what I wanted him to do, why did I not do that myself? Why did I not say – please leave and we can each be on our own?

I know why I didn’t leave for so long. The Navy gave us forced separations for long periods of time. I’m convinced it was the only thing that kept us truly married until I made the decision to not be counterpart anymore. There was also the practicality of it all – money and kids. There are many reasons why we do not leave and they are all very good reasons.

So in staying with the alcoholic, how much good does it do to belittle and badger? NONE! Would I want to be talked to in that manner – absolutely not. Doing unto others also means NOT doing unto them at all. Instead of all the mean hateful things I said, maybe I should have taken a step back and not said anything at all. Maybe I should have found another outlet for my ranting and venting.

Would anything I did keep him from drinking? NO!  Nothing I said or did could have kept him from climbing back inside that bottle. Getting back to drunkenness was solely his doing. I had no control over what he does or why he does it. I did not cause him to drink. He might have used me as an excuse, but this responsibility is his and his alone.

If that’s the case, then why am I so adamant about family programs? Because as the family and potential caretaker, we must come to know and understand that we have no control, that we did not cause, nor can we cure the alcoholism. The reason WHY the alcoholic started drinking or what makes them choose alcohol over the family is really of no consideration. An alcoholic drinks because he/she is an alcoholic. It’s that simple which makes it hard to understand.

Family programs can offer insight as to what to do next – after the acceptance that we are not to blame. They can teach us about detachment and offer a means to finding out just what the passion is that lives inside us all outside of the alcoholic insanity. They can remind us of the Golden Rule and they can provide valuable biological insight of alcoholism. If we know what to expect, we are better prepared for the ramifications. Knowledge is the key to survival. Family programs can provide that knowledge.

Forgiving is not forgetting...

Riley is now at the nursing home and resting in a sparse room with bare white walls. There is window that looks out on the courtyard so he does have a view of the outside world. I’ve taken in a balloon bouquet, but the room still seems empty and cold. I thought my readers might be willing to help me brighten the place up a bit, so I’ve made arrangements for mail to be delivered to Riley at the home. If you want to help me turn those white walls into colorful expressions of thoughts and prayers, please send cards to:

RILEY RILEY

c/o Kindred Healthcare

901 South Halstead Blvd.

Elizabeth City, NC 27909-6920 

Today I’ll be going to visit and read to him from “The Wind in the Willows” by Kenneth Grahame. It was read to Riley and his brother when they were very small children. I think this might be comforting for him. If his mother were here, I’m sure this is what she would read to her little boy.

When I visited yesterday, Riley was actually looking a bit better. His face had filled out a bit and his complexion was better. I have been told that dying people do start to look better as they reach the end. I suppose its nature’s way of giving us a better memory of the last days.

Riley barely acknowledged my presence when I entered the room. He opened his eyes only for a second and promptly closed them again. I waited. A nurse came in and took his vitals. Then another gave him a bath. The bath woke him up. He was not happy that he was being bathed. His speech has degenerated to mumblings so I couldn’t make out the words, but I knew he was protesting. When she was done, she asked “Now… doesn’t that feel better?” I was sure I could understand him saying, “If you say so.”

Now that he was awake, I tried to make some light conversation. I mentioned that his room was nice and the bed looked comfortable. I told him I had talked to the staff and everyone seemed competent and caring. He mumbled something and opened only one of his eyes.

His nurse came back in and gave him some medicine. I’m not sure what it was, but he didn’t protest. He has difficulty swallowing pills, so the medicine was in liquid form. Before she left, Riley asked her for a drink. She said she would bring in some water. He clearly said NO followed by more mumbling. I’m sure he was asking for vodka and soda. The nurse told him “I’ll check on that” and left the room.

The thought occurred to me… why not let him have a little vodka? He can only get down a tiny bit at a time. He is clearly dying so there is no hope for sobriety. If it keeps him calm to have a few drops of vodka, what would be the harm? But, I kept quiet. I felt sure there was some kind of law or something preventing the precious liquid ever getting to Riley’s lips. Then again – I looked back at him and didn’t really see much agitation in his face. He didn’t need the vodka to keep him calm. Now I’m thinking is was some kind of “Pavlov’s Dog” reaction to just being awake and alive.

I’m not sure if “calmness” was what I was witnessing. I think it was more of a sense of resignation. He is out of options, out of choices, he is resigned to being in that bed and unable to do for himself. I don’t think he likes it, but is resolved in the knowledge that this is how it must be. I’m not sure if he has accepted the fact that his death is imminent. But, I’m sure he knows that this is not what he expected his last days to be like. He must be wondering – where’s the jealous husband chasing him with a gun and shooting him as he is jumping over a fence after catching him with the wife? Lying in a hospital bed is so mundane, boring, and without an interesting story for his legacy.

Besides reading to Riley, I will offer him my forgiveness for anything he may have done in the past that hurt me. I will also ask for his forgiveness for anything I may have done that hurt him. I will tell him that the kids love him and miss him. I will lie to him and tell him that his oldest son forgives him for the past. I will do or say whatever I have to do to let him depart earth as peacefully as possible.

I’m not so sure I really can forgive him or that his son will ever forgive him. Maybe in time the good memories will overtake the bad now that the bad will stop repeating over and over. I long since grieved the loss of the man who was my husband. All of this just feels like a formality. I am sad. I’m sad to think about the life Riley could have had if he had taken a different path. But, what is the point in that? It was what it was and it is what it is.

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.

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.

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.

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.