Nightmare move...

Leaving the big country house was an exercise that could have been portrayed in a Stephen King movie. It was a nightmare. All of my careful planning and organization, hiring of the handyman and housecleaner, and hiring a professional moving company turned out to be a comedy of errors. The plan was all about timing. I packed everything I could and then the movers were to pack what was left. As they emptied each room, the housecleaner, handyman and I would clean and make any repairs. I had separated certain boxes and a suitcase for the movers to take to my grandson’s house rather than go to storage. The “storage room” stuff was totally separate from the “grandson house” stuff. The boxes were clearly marked with red tape. I needed the movers to take them because my van was totally packed.

But, the timing was thrown off when the movers called to tell me they could not get to my house until 3:00 p.m. I thought – well OK – it shouldn’t take more than a couple of hours for the truck to load and we’d be completely done by 7 p.m. It was not the best scenario because it meant the cleaners and handyman would have to come back the next day to finish the job. But I needed to move forward.

To make a long story short – the moved was complete at 4:45 a.m. the NEXT morning. To top it all off, my careful separation of storage and house stuff was totally lost. Everything was simply thrown haphazardly into the storage room. By this time I had been awake for more than 30 hours and was not up to arguing or fussing with the rude workers. I just wanted it to be over.

I picked up Riley at the nursing home the following day and took him to our new temporary home – my grandson’s house. Riley and I are now sharing the master bedroom. It is an uncomfortable situation, but it is only temporary. I can handle this.

I had been given specific directions from the nursing home about how to take care of Riley. He was not to be left alone for any small amount of time. He needed his meals at regular times. Bathe him daily but he was not to get into the shower. Do not allow him to try to walk – he was to either be in bed or in his wheelchair. I wasn’t sure how I was going to meet all the requirements. My grandson’s wife had been searching for a personal aide for him, but had not had much luck.

The first 24 hours were very unpleasant to say the least.  By the end of the day I decided that I would try to help him regain some ability to walk. He had had NO physical therapy at the nursing home and I thought maybe with a little exercise and practice, he might be able to become at least a little more mobile. I was right. He can now get to the bathroom and he has discovered that he can make it to the toilet in time which means I don’t have to change messy diapers. He still wears the pull-ups in case of an accident – but for the most part he takes care of that by himself. This takes a HUGE load off my shoulders.

Riley has not expressed any interest in leaving the bedroom. He watches his TV, eats and sleeps. That’s his day in a nutshell. When everyone is home, the rest of the small house gets chaotic and he cannot handle the noise and confusion.

On the way home from the nursing home, Riley told me he couldn’t wait for a sandwich and a beer. I told him I was happy to make him a sandwich, but that there would be NO beer – or any other alcohol for that matter. As long as we are living with the kids, he would be alcohol-free. And – since we are looking for a larger house to share with the kids on a permanent basis – he better get used to the idea of not being drunk. He did not argue and has not asked for anything to drink since.

Over the past couple of weeks, I’ve had to leave him alone for short periods of time. When I returned everything was fine. I did not find him on the floor or stressed or drunk. So it seems, I am able to do things like grocery shopping or running some errands. I’m never gone for more than two hours – but it is a welcome time away from the house.

Sleep is a different story. Riley doesn’t sleep well through the entire night. I hear him gasping for a breath of air. I suspect he has some sleep apnea – which I will address with his primary care physician. I wake up each time I hear him make a noise that doesn’t sound “right”. As a result, I never get a full eight hours of sleep.

I keep a small supply of my own medication at my grandson’s in case I get stranded here and can’t get to my regular supply. I had been using my emergency supply because my suitcase containing my prescriptions ended up somewhere in the storage room. I thought that I could get my grandson to get them out and that it would not be a problem. However, when the boys went to the storage room, they had difficulty even getting into the shed to find anything. They did the best they could to move boxes around and still – there was no suitcase.

Because I couldn’t find my medication, I started making phone calls to the doctors who had prescribed them. I got nowhere. I left messages. I talked to the nurses. I was told that I had just had my meds refilled and if I wanted another prescription, I needed to make an appointment to see the doctor. I didn’t want to drive two hours to a doctor that I didn’t like when I knew those meds were in that storage room. But, basically, I was without my meds for the better part of two weeks.

I made an appointment with a primary care doctor here in the new location. I thought, I’d just start over with a new doctor. I explained my situation and the new doctor was happy to see me to get a prescription for my meds and then give me a physical later on in the month. This was good. I felt I had found a solution. I was exhausted and feeling generally yukky, but this would all be resolved.

Like any new patient, I expected the appointment to be lengthy. What I did not expect was the medical assistant coming in looking at me with concern and asking if I felt OK. She didn’t wait for an answer, but took my vitals and said she’d be right back. When she returned with the physician assistant, we talked a bit and then I was told they had called an ambulance to transport me to the hospital. I was confused and found that I was having difficulty answering the questions. Why was I going to the hospital? I just needed my prescriptions refilled. I couldn’t be gone that long from Riley.

The next thing I knew I was in the ambulance with a couple of EMT’s named Bruce and Eric. Bruce was talking softly to me and asking me questions. I didn’t feel like I could answer him. He told me not to worry they would take good care of me. I tried to tell him that people don’t “take care of me” – I take care of them. But we were now moving on down the road to the hospital.

When we were finally in the emergency room, my daughter came over. She told me that my blood pressure was extremely high and the doctor suspected that I was going to have (or having) a stroke. I remember hearing the numbers 200 and something over 100 and something. I repeated that I just wanted my prescriptions refilled. A doctor came over and asked some questions. My daughter talked to her because now I was so distraught that nothing was coming out of my mouth that made any sense.

I was given some medication and almost immediately I felt more relaxed. I was whisked off to getting a cat scan. By the time I returned to the room, I was dozing in and out. I was tired and just wanted to get to sleep.

The scan showed that there was no NEW damage. I got enough medication for two weeks and was sent home. I was told to make sure I took ALL my medication everyday as prescribed. I was instructed to get plenty of rest and make sure I avoided stress. If I do that, I should be fine.

My search for a personal aide for Riley continues.

Tell me how you really feel...

I’m excited an honored to find out that I’ve been recognized for excellence due to the contribution of excellent editorial work in the world of alcoholic addition. You can view the details here:

http://www.kwikmed.org/20-exceptional-alcohol-addiction-resources/

The site lists the “Top 20 Truly Exceptional Alcohol Addiction Resources”. Each of the 20 blogs have been reviewed on this site. It seems my site is a bit “old fashioned without many images”.  Maybe it's time for a re-vamp.

Now for today’s post:

Riley will be released from the nursing home on Friday. The nursing home has said they will help me get him into the van. I’m picking him up late in the afternoon so my grandson will be home by the time I return. He can help me get him up the flight of stairs that leads to the front door. His bed will be ready and waiting for him.

That will be a turning point in my life. Until I find a personal aide that I can afford, I will be at Riley’s beck and call 24 hours a day. I will begin my caretaker role in a whole new direction. While I’m not looking forward to it – I accept the inevitability of it. It is what it is and fighting it only makes me cranky. Crankiness is not something I want to display to my great-grandchildren who (in my mind) will be the one thing that makes giving up this country house worthwhile.

Riley is a handful. Even his nursing home nurses tell me that he is difficult because he refuses to cooperate and doesn’t understand his own limitations. His brain function doesn’t allow him to remember that he can’t walk to the bathroom. He has always been passive aggressive, so now it manifests itself in ways that cause his nurses to come running when he thinks he hasn’t had enough attention. He now lacks the ability to form reasonable logical conclusions or conversation. He truly doesn’t understand why he can’t go home to his very own place and continue living his life on his own.

I’m asked how I feel about that. How do I feel that he is a child in an adult’s body and I must tend to him? My answer is … well… how do you think I feel? Riley has so destroyed his own mind and body that he can no longer function even though he is sober. He has done this to himself. I want to feel some kind of empathy for him, but I do not. I want to be able to say – oh! He can’t help how he is. But, the truth is he COULD have prevented this and his choice was to stay on the insanity path and destroy everyone in the vicinity. So I feel angry with him for making those choices. I feel sadness that such an intelligent man was so stupid to not accept the opportunities that have been presented to him so many times. I’m hurt that he didn’t care about the outcome for the rest of the family. That’s how I feel.

But, how I feel really doesn’t matter. I never thought things would go this direction when I first took him back in. I wasn’t seeing the situation clearly when I made that decision. I would have still prevented my daughter from taking him into her home – but I might have searched for an option other than the one I choose. And there you have it – I CHOOSE to take him it. It was MY decision and now I must come to terms with the fact that I may have made the wrong choice. It’s just the same as Riley making a wrong choice. I’m really no different. The choice was made and now I must deal with it. Since Riley cannot be an adult, I must handle both of our choices in an adult manner for both of us.

The hospice care doctor says Riley LOOKS physically better, so he is better and is no longer dying. The doc says he sees “no decline” in his condition. I don’t agree. I see decline every time I go see him. No lab tests have been taken and as long as he is in the nursing home, none will be done. However, the doc was quick to tell me that I must be the “gatekeeper to the liquor cabinet.”  He tells me Riley has very little liver function and ANY alcohol at all could be a fatal drink. I explain that it isn’t just the liquor cabinet that Riley is interested in because he will drink anything he can get his hands on. The doctor says I must watch him 24/7 because his fate is in my hands. Isn’t that just peachy? It seems that now my entire role in life is to keep Riley alive by not allowing him what he wants as he proceeds to death’s door.

My uncle had emphysema. He had this portable oxygen tank that he pulled around with him. He smoked constantly even with the oxygen tank close by. I went to visit him as he was dying in his bed at home. His days were extremely short and I remember feeling so sad for the loss I was about to endure. He was always happy to see me. When I walked into the room he gave me a wide grin and said “Hey… honey… tell me like it is.” He was talking about what was going on in my life and not about his illness. As we talked, he asked me to hand him his cigarettes. I said no – he knew he wasn’t supposed to be smoking. His response was he was dying anyway, so what did it matter? I knew he was past the point of being saved and he was 93 years old. But I didn’t give him that cigarette. He died a few days later while smoking his last cigarette. In hindsight, I think I should not have denied his last bit of pleasure when he was so near the end of his life. Heck, I should have gotten him a top notch cigar.

When I was asked if I would give Riley alcohol when he returned home, I thought of my 93 year old uncle and his desire for that cigarette. At this point, before I’m actually faced with the decision, I’d have to say I will not serve Riley alcohol just like I didn’t get that cigarette. But, and this is a big BUT, if Riley expresses his anger in ways that makes him impossible for me to handle, I might just give him that drink. Of course, it won’t be enough for him and my fear is if I give an inch he will pressure me to make it a mile. So, I guess my answer is – I don’t know.

I’ve been a caretaker before so I know how difficult it will be. Every time in the past, I had a lot of support and relief. I was not in it alone. This time, it’s just me. Unless I can find a personal care aid who will work for homemade peanut butter cookies – it’s all on my shoulders. It’s OK. My shoulders may not be wide, but they are strong. Psychologically I’m stronger than Riley. I can do this and I will do it to the best of my ability. After all, I’ve always been an over-achiever.

Somewhere in the back of my mind, I think – it’s too bad that the functional alcoholics who read my blog can’t come and sit with Riley for 48 hours. Let each of them take care of him for just a weekend. This would show them what their lives might be like if they continue to drink themselves into oblivion. Maybe instead of picking up trash alongside the road, the legal system could use caretaking Riley as a form of community service. If they saw what the future could hold -- maybe – just maybe – their choice would switch from insanity to sobriety. Maybe they would choose not to be a child in the body of a 70 year old.

Change of scenery...

I’m in a pretty good mood in spite of all the frustration and drama of the past few weeks. I’m focused on moving forward and doing what must be done. I’ve accepted what’s coming and that has provided me with some sense of relief. I thought about writing about yesterday’s frustrations and the unprofessionalism of people who, in my opinion, should have the upmost in professionality. But my mind is going in a different direction and sometimes --- well --- you just have to let it wander.

Although I’ll soon be living just blocks from the Atlantic Ocean, I’m really not much of a beach person. I love the mountains with all the tall trees and clean air. I love the sounds of solitude and the sight of the sun setting behind the treetops. That’s where I am most able to recharge, regroup, and redefine my whole being. Autumn in the mountains is my favorite time of year. Sipping on hot coffee on a frosty morning and sitting by the fireplace in the evenings while reading a good – that’s my idea of heaven.

Years before moving to the Carolinas, while we were still in California, I found an ad for some land in the Klamath Mountains in Oregon. On a whim, Alea and I decided to take a road trip and check out the parcels that were available. It wasn’t so much that I wanted to buy, but rather, I just wanted to look. Road trips with Alea are always fun and I love our bonding time together.

As we made our way up Interstate 5 we passed through the town of Weed and saw an old-fashioned motor lodge where each room was an individual cottage with a carport type garage attached. We could image a Model T Ford in the carport and the travelers settling down for a night of rest. Back in the day it would be a very long drive between rest areas.

Once passed Weed, we diverted our to route to Highway 97. It can be quite boring. No tourist towns. No Stulkey’s fudge ads. Just small town communities in between lots of farm land. Utility poles lined one side of the road for a while and then switched over to the other side after many miles. There were farm houses off in the distance. At one point trees seem almost non-existent – except for some that were part of the yards of the farmhouses.

We had each been quiet for a time with each of us in our own thoughts. Then Alea asked “Do you think the number of trees in the yards is an indicator of how wealthy or the class level of the owners?” I turned my head and stared at her. I wasn’t sure if she was kidding or if she meant it to be a serious question. There was no hint of amusement in her face. I couldn’t help it. I wanted to answer her seriously but instead I burst out in laughter leading to tears streaming down my face. What on earth was she thinking??? So I said (or I tried to say thru my giggling) “Maybe when the income taxes returns are filed, their income is evaluated and then IRS gives them a tree if they made more than last year.”  Both of us were laughing uncontrollably by this time. “OH!! LOOK!! They must be having very good years!!”

Now that we were started on poking fun at our surrounding and finding humor from simple things we were on a roll. We saw signs along the highway that informed us we were in a “Deer Crossing” zone. We wondered if the deer knew they were to cross there at that very location rather than crossing farther down where there was no crossing zone sign. We came up with many different scenarios of how the deer could be informed of their crossing restrictions and what the punishment would be if they didn’t abide by those rules. It was as ridiculous as some Dr. Seuss books. We didn’t care we were thoroughly enjoying our absurdness.

In some places the utility poles seemed to be shorter than others. There would be miles of short poles and then miles of taller poles. We couldn’t figure out why that would be. We tried to come up with all the rational practical reasons, but none of them were working for us. We surmised that the work crew for the shorter poles must have had shorter construction workers and that the poles seemed high enough to them. The taller poles were constructed on days when the crew contained taller workers. It made sense to us at the time.

By the time we reached Klamath Falls, we were exhausted from the long trip and our sides ached from all the laughing. We found a room and slept in the next morning. Then it was off to view all the parcels of land that we had researched previously. It was so reasonably priced that it was almost scary. But people had already been buying up the land and were actually settling into their surroundings. Maybe it was not such a far-fetched idea of latching onto a piece of land for ourselves.

On Sunday we spent the day checking out the town and exploring the area. It was a layed-back kinda place with lots of little interesting gift shops. I could almost see myself living here. Of course, there was not much work here for an executive assistant or real estate title examiner. I would have to take a substantial cut in pay and I doubted that would be something I was interested in doing. I had never really intended for this to lead to the possibly of me leaving my current job and moving to Oregon. This was just a fact finding mission mixed with a mini-vacation from home.

The drive home was filled with talk of family matters and things of a more practical nature. We agreed Klamath Falls was a nice place to visit, but probably not a place to live. However, buying a parcel of land and using it as a “vacation” retreat was not a bad idea. If only there was a more accessible route rather than Highway 97.

Pulling into my driveway, I felt tired but refreshed. I returned to the reality of the here and now. I checked in on my brother (who was dying from leukemia) and thanked the family friend for taking time from her job to stay with him while I was gone. The respite had been good. It was what I had needed.

Maybe as I begin a new phase as caretaker for Riley, there will be a mini-vacation respite with one of the kids that will give me memories as wonderful as the ones I gained from Klamath Falls.

Get your copy now!

The

Immortal Alcoholic's Wife

is now available!!

See the right side bar for the "Buy Now" button and download your PDF version of the book. Kindle and Amazon will not be available for several months. Get it now and download it too any app that accepts PDF documents!

Old fashioned marriage...

I’m old school. I freely and openly admit that I was raised in an era when things are now looked upon as “out of date.” I’m not alone. I’m a baby-boomer and, last I heard, we make up the majority of the senior citizen pool. I’m just freakin’ fine with that. I’m proud to be from the time warp where family was everything and a person’s handshake was as good a signature. I drank from the water hose and rode my bike without a helmet. Those were the days my friend.

Riley is nine years older than me. But, I know his childhood was, generally, much the same as mine when it came to how things were back in the day. We were raised with a certain mind-set, a certain set of beliefs and the knowledge that if we worked hard and paid our dues – in the long run – we would reap the reward of the golden years. We didn’t know that the “Golden Years” are not for sissy’s.

Both, Riley and I, were sixteen years old when we got our first bonafide job. We started paying income taxes and into our Social Security plan and we were proud to do it. We believed this was in our best interest as well as our country’s. Riley is now 73 and I’m 64. We’ve been paying into Social Security for the better part of 50 years. If we added up all the money we have paid into the program, I would imagine it would be a sizable amount even though we were always a middle-income couple.

When I found out that Medicare – part of our Social Security program – wasn’t going to pay for Riley’s nursing home, I was a bit taken aback. How could we be paying into something for so long not help us at a time when it was most needed?

The truth is… I’m not alone in the belief that Medicare will take care of us. When I met with the social worked at the Veteran’s Administration, she explained that many people are under the false impression that Medicare will pick up the slack. Yes. Medicare will pick up certain expenses, but the reality is they will not pay for any type of custodial care. She explained further that when reality hits, it creates a form of culture shock. People in my age bracket have worked most of their lives and enjoyed the fruits of their labor – such as health insurance. When they retire, the company provided health insurance goes away or becomes too expensive to continue. They are left with Medicare which covers many things and is a Godsend when illness takes over. But, it leaves a lot uncovered and the quality of care often goes down considerably.

Riley and I have always been well-insured between his military medical and my private health insurance; we had our choice of the best doctors and hospitals. You would think when Medicare got added to the mix, we would be even better off. When I was forced into retirement, I could not pay for the private health insurance. Somehow I had the mindset that we would be OK because we had both military and Medicare. But it was simply just a false sense of security. When it was explained to me, I thought – OK that was a kick in the reality pants. What’s next?

I never in my life thought I would be applying for Medicaid. In the past we had enough money to take care of ourselves and I would never imagine that I’d be faced with asking my government for money to help support me. This feels like Welfare and I’m just not a Welfare person. BUT WAIT!!! As the social worker so aptly put it – have I not been paying taxes for about 50 years? Have I not paid into the system? The answer was YES – I (we) had been paying and paying into the system for the majority of our lives. It’s not “Welfare”. It’s a benefit from living in this country and paying my dues. I’m not asking the taxpayers to foot my bill – I am asking for the use of the money I have contributed. I know there was no “Medicaid” account deduction on my paycheck, but isn’t it implied? I had before never seen it from that point of view.

I really don’t want Medicaid to pay for Riley’s nursing home expenses. I’d rather get the assistance in the form of an allowance for a personal care attendant for Riley. That seems reasonable to me. It’s the only way I can save my sanity and still tend to Riley’s care.

As far as Medicaid taking all of Riley’s income to pay for a nursing home, that doesn’t seem unreasonable to a certain degree. If I could maintain a portion of his income and give the rest to the nursing home, I might be able to get my mind around it. But, that leads to a whole other issue that also seems to be “old school.”

Back in my day when a couple married – they truly married. Their lives became one just as their assets and debts were combined. Both paychecks went into one bank account and the bills were paid without regard as to which of the couple initiated the expense. The house payment was not divided into his and hers. The car payments were not split by the one who drove the car the most often. Everything was shared – money, cars, house, children, mothers, fathers… everything became the property of the couple who were now ONE entity.

I sometimes hear my niece say that her husband couldn’t pay his share of the house payment or his car payment this month and I wonder if they are married or just roommates. I know it is not this way with all young couples, but it seems to be getting to be the norm rather than the exception. That’s not how I have viewed my marriage with the exception of the time when we were separated. Then Riley was on his own and I supported myself.

When I took Riley back in there were expenses that needed to be met and his lack of responsibility for his credit cards needed to be reckoned with. Once again, we combined the money and I managed to dig him out of the hole he had created while still maintaining the obligations I had created before he came back. Besides that there were issues of the expense of taking care of him – personal aides, diapers, etc., etc. Using my employment income and his income, I managed to provide him with everything he needed – everything WE needed. And now, since I am retired, I have replaced the employment income with a social security check – a far less amount.

We have encumbered “joint” responsibilities – such as the lease on a house that accommodates our needs. I’m still paying on many of his prior obligations – such as a tax debt that I will be held responsible for as his legal spouse even after his death. Since his heart attack, any money we had put aside was used to meet transportation and other expenses while being at his side in the hospital which was more than two hours from home. He has had special needs with being in the nursing home as well. Why should I not use his (our) income to help pay for these encumbrances? Should I just ignore the bills and say “Oh well…”?

A divorce will not solve my financial problems. Any encumbrances made while legally married will still be my responsibility even after divorce. Also, if I divorce now, I will lose the only health insurance I have – my TriCare through the military. We need to stay married for another year for me to be “grandfathered” into TriCare. And I won’t be eligible for Medicare for another year. I will also lose the ability to receive the Veteran’s Admin allowance called “Dependent’s Indemnity Compensation.”  Divorce is not a good option for me.

My daughter reassures me that she will not take her father into her home. She says she is past it. But, I don’t trust that she will be able to stand by that decision as she watches him slip further downhill. I don’t trust that she has that resolve. My grandson, has shown incredible grief as he sat by Riley’s bed waiting for him to die. I didn’t expect that. I still must be the barrier between Riley, Alea and Ryan.

One of my readers believes I’m just after Riley’s “pension” money. Well… I guess she’s right. I DO want to be able to keep using the money in his retirement check. We are a legally married couple who have made financial commitments that are binding to us as a unit of one. I’m not willing (nor able) to go back to work full-time in order to meet obligations that are the responsibility of both of us. It might kill me to have Riley come back home and have to manage his care, but it will definitely kill me if I try to go back to being an employee in the working world. I’ll leave that job for someone who needs it more than I – like parents trying to raise their youngsters.

When I thought Riley wasn’t coming home, I started to prepare for a big loss of income. Moving with the grandkids and settling into a much smaller place was part of the plan. But, I was also looking forward to a future that included new adventures – like taking the OARS Group to the next level of public meetings. It will still happen – all of it will happen – it’s just that my timeline will be extended.

 Am I still in prison? Yes. But, it’s up to me to make those bars more elastic that they have been. I may not be able to escape permanently for a while – but I’ll still venture out when I can.

Outwit, outlast, survive...

I should have expected that something weird would happen on Friday the 13^th. But, I’ve always ignored the connotations of bad luck and simply gone on about my business. I didn’t see why this Friday the 13^th would be any different. In fact, I had planned the first ever public OARS meeting for that day. I figured that it might be a bad day for caretakers of end-stage alcoholics and that they might need some extra support. I was not prepared for how my day would go from a personal point of view.

The day before 13^th, I had received a phone call from the hospice nurse informing me that Riley was going to be removed from the hospice program because he appeared, physically, to be improving. In order for him to stay in the program, there had to be a decline in his condition. There was none. However, hospice does not do lab tests. So they really could not determine that Riley was dying from end-stage liver disease. All they knew was that he was not as yellow, eating well, and generally had a good attitude.

I asked what that meant to me. What would happen next? I was informed that Riley would stay in the nursing home. Nothing really would change except he would no longer be under VA’s hospice care program. OK. That was acceptable to me. I didn’t see a problem.

On Friday the 13^th I received a call from the business office of the nursing home. A very pleasant young lady wanted to know how they should proceed with the billing of Riley’s account since VA would no longer be paying for him being a patient. The daily cost will be $250/day which comes to more than $7,000 per month. I was a little taken back, because I thought VA or Medicare would be paying for his continued stay. No. VA doesn’t pay for any custodial care. Neither does Medicare nor TriCare. The only way to keep Riley in the nursing home was for him to be admitted to the hospital for three days. Upon his hospital discharge he could go directly back to the nursing home. The only problem is that there is no viable reason for Riley to be admitted to the hospital.

I explained that I am not physically capable to taking care of him. What would happen if I just didn’t come get him? The answer was that they would keep him, but they would start billing me for the $7K each month plus incidentals.

There had to be some other options. People have elderly family members put into nursing homes all the time. How did they do it?

I was advised to apply to Medicaid to try to get some assistance. But, I’m sure I make too much money for that type of aid. Then I was told that if I used the Medicaid option, all of Riley’s income would go toward the nursing home. I would be left with only income that I had separate from Riley. Well… since I’ve retired, that would leave me with only my Social Security. While I know that people live on less, I didn’t see how I would be able to pay my $1100 rent and my utilities with my $1200 per month. This did not seem like a viable option.

My next step, in the panic of realizing that Riley may in fact be coming home, was to start making phone calls. I tried everywhere in the Veterans Administration but it was Friday and all my calls were going to voicemail. I tried Medicare. I got a real person but the info provided was what I already knew. I called Medicaid and again there was no new discovery there. This Friday the 13^th was not turning out very well for me.

Images of me trying to get Riley into the van, out of the van, up the steps and into the house was more like a slap-stick comedy. Then there was the issue of not having a bed for him since I had gotten rid of the feces and urine saturated bedding long ago. How would I tend to his personal needs and still keep myself safe? I wasn’t sure and no one had any answers.

Late in the afternoon the hospice nurse called to tell me that they had decided not to discharge Riley until Friday of the following week. I breathed a huge sigh of relief. I had a week reprieve. Maybe I could get some help from someone.

I walked around the country house and saw all the boxes I had packed in anticipation of moving closer to the kids. I beat myself up over not listening to my gut instincts. I knew deep down that Riley is immortal. I didn’t truly believe that he was never coming home no matter how many times I had been told those words over and over again. Even when I gave my landlady notice, I had a little twinge in my stomach that something was just not right. I went ahead and made plans and proceeded to act on them.  I convinced myself that I could trust the medical community and move forward in my life. After all, more than five med pros had told me that Riley would be in a nursing home for the rest of his life.

The following Monday I was back on the phone again. I talked to the head of the VA hospice program for our area and even she was confused as to what had happened. She requested his records so she could review the decision. In the meantime, she told me to prepare for his homecoming but that she would not allow him to be discharged until the last day of July. I told her that if he comes home there is a good chance that I will die before him. I asked her what would happen to him then? She had no answer. I mumbled something about how irritating it was that my life is expendable in order to save his – a life that he clearly did not want.

I’ve called the Senator’s office again and they are trying to rush through Riley’s disability application in order for me to have the funds I need to hire a personal care aide. The VA has provided me with a hospital bed and wheel chair. I just found out I can also get other items I will need, like ramps into the house and van.

Today I will send an e-mail to my landlady and ask if I can stay another 30 days at this house. My plan was to stay with the kids for a while, but there isn’t enough room for both me and Riley. And I don’t want Riley around the small children. If my landlady does not agree – I don’t know where we will be living. If I can stay, I’ll have 30 days to find a place suitable for the two of us in the same town as the kids. It will have to be a cheap place because the cost of an aide will quickly empty what is left of our shrinking bank account.

As with every difficulty in my life, I always find a way to accomplish what needs to be done. Sometimes the way isn’t pleasant or what I want – but I survive. I know that the odds are against me right now. I know my health is not where it should be to take on the task of caretaking Riley. I know I’m in danger. Knowing all that means I must do everything I can to make sure that Riley does not outlast me. I am digging through all the packed boxes and looking for my “survivor hat.” I know it is in here somewhere…

Save the children...

I didn’t grow up in an alcoholic home. I had a cousin who died of alcoholism, but as a child I never experience any effects of his alcoholic behavior. I also had an uncle who always drank too much at Christmas and was very funny. I only saw him a couple of times a year, so if he drank more often than Christmas, I had no knowledge of it.

My father served in the Army Air Corp during World War II and was a radioman for bombers. His best friend was a gunman and sat in a glass dome on the airplane. After many missions the plane was shot down, but the first hit was the glass dome. My father tried frantically to get to his friend, but could not reach him. The friend was sucked out of the dome and his body was never found. My father never flew another mission. He went on leave and before he could get back into a plane, the war was over.

My mother told me once that my father had a lot of drunken days when he was first discharged from the Army. The drinking lasted for about a year after they were married. Then, according to my mother, one day my father just decided to let go of the pain and guilt he felt about his friend’s death and quit over-indulging in alcohol. She didn’t know what the catalyst was but she was grateful to whoever or whatever it was that made him “see the light” as she put it.

All that happened way before they had children. It wasn’t for another two years before my older brother was born. So we never witnessed my father in a drunken stupor. Was my father an alcoholic? I don’t think so. He did drink a time or two during my childhood – a highball at Christmas, champagne at weddings, a hot toddy when he had a cold – that was about it. A bottle of whiskey could sit in our cupboards for several years and not go dry.

What if things had not turned out that way? What if my father continued along a path of self-destruction? Would I be the same person I am today? Would any of my four brothers be the people they grew up to be? I think not. I think we might not have grown into the strong determined people we are today. We’ve all had issues. We’ve all been rebellious. But in the end we are turned out to be responsible, caring adults with a strong sense of family and a healthy work-ethic. I think that maybe we might have lost the ability to be those things if my father had not stopped drinking.

Children who grow up in alcoholic families have a tough time in life. They have difficulties in school and lack language and reasoning skills. It is difficult for them to solve problems in work assignments and that falls over into social relationships. If they have a friend and the friendship hits a rough spot, it is often difficult for them to find a way of working it out. These children often have a low opinion of themselves because they cannot control everything that goes on in the home environment. Other children strive for perfection and receive high academic grades. They believe if they are perfect enough, then maybe the alcoholic will stop drinking.

In short, children have an over inflated idea of their responsibility for the alcoholic’s drinking. They do not understand that they did not cause it and they cannot control it. All this leaves them with an overwhelming sense of helplessness and hopelessness.

It is not surprising to me that children who grow up in alcoholic families have a tendency to become alcoholics themselves. It is unclear if the alcoholism is a result of nature or nurture. I don’t think there is enough conclusive evidence to make that determination. But I do know one thing for absolute certainty and that’s that there is no room for children in an alcohol infected home.

I have often thought that if my son had not been raised in the presence of alcoholism, he might not have ever started drinking alcoholicly. Maybe my son would still be alive if I had left Riley and removed both of my children from the influence of alcoholism. However, Riley wasn’t around very much because he was deployed with his Navy unit for more than 50% of their childhood. So was Brian the recipient of some biological gene that he inherited from his father? It is just not clear. There were other factors that played a part in his death that had nothing to do with alcohol. But the end result is the same – my son died from alcohol related causes.

On the other hand, my daughter Alea, has no penchant towards over-indulgence in any type of alcoholic beverage. I’m sure she has experienced being drunk and has had a hangover in her earlier, wilder years. But, she is not much of a drinker. So what does that mean? She is Riley’s step-daughter, so she did not inherit any of Riley’s genes. But her teen years were difficult and filled with inappropriate behavior causing me to anxiously await her turn home after every evening that she went out. She protected Riley fiercely – after all he had been her father since she was six months old. They had a special bond that got stronger as she got older.

I just can’t help thinking that if I had left Riley and stayed away from him while the children were still very young, they would have a different life now. Maybe Brian would be alive to enjoy his life and maybe Alea would not have struggled so hard during her teen years. I’ve always believed that it takes a village to raise a child. If I had taken my children back to my village of non-alcoholic residents – my family – and provided them better examples of how to live their lives, maybe things would have been different.

My children are incredible. They are strong, independent, loving and I’m so very proud of them, even though one is gone. But, if I had it to do over again, I would not have subjected them to life with an alcoholic. If I had understood then what I understand now – I would not have hesitated for a moment.

If you are struggling with a decision of whether to leave your alcoholic consider the cost of staying from your children’s point of view. If you have very young children, do some research and find out what they might have to endure while wrapped in that insanity. It is scary to think about. Put yourself in your children’s situation. How would you want your childhood to be?

I hereby declare...

Today is Independence Day. I’ve already celebrated our country’s most patriotic holiday with my family on the Outer Banks, but today I’m going to have another celebration. Today’s celebration is for my own independence.

As the wife and caretaker of an end-stage alcoholic, there is no independence. Everything is done based on the needs of the alcoholic or the needs of protecting the home and others from alcoholic behavior. No matter how detached you are, there is still this invisible chain between the caregiver and the alcoholic.

My independence has taken a long time to achieve. Even now, I still have that invisible chain attached. But the chain is lighter in weight and doesn’t chaff me where it is attached to my body.  I’m doing things I want to do based on my own schedule. With Riley in the nursing home, I am able to get a sense of freedom.  The lighter weight chain is the one that has me going to the nursing home and visiting Riley every second or third day. The chain is about monitoring his care, providing direction, and attending doctor appointments. Before the chain was just a burden, now it’s productive. I guess that is what makes it seem to weigh less.

One of my commenters suggested I had had a “change of attitude”. I’m not so sure that my attitude has changed at all. I still think Riley is immortal. I still will protect my daughter from taking him into her home. I still feel the demands of fighting perceptions and sharing my knowledge and experience. If anything has changed it is my ability to see the possibility of a more productive and pleasant future.

These past couples of weeks have been very productive and I’m excited to report that the first ever real-live, in-person OARS F&F Group will meet in the real office of my addiction counselor friend. In my small town there is only one Al-Anon meeting. I believe this addition of the OARS group will fit in nicely with its meeting time of 4 p.m. on a Friday. Drunken weekends start on Fridays; this may help the caretaker deal more sensibly with the insanity of alcoholic-ness. If this goes well, I will consider starting a group on the Outer Banks and the Tidewater area. If you in the area, please join us on the third floor of the Old Bank of America Building, Broad and Eden Streets, Edenton, NC.

I’m also pleased to announce that the Veterans Administration Caregiver Support Division of Hampton Roads and North Carolina, have asked me to help set up a veteran caregiver support group. They have volunteered to work with me in the OARS endeavor and in return I will help with establishing their support group. It is such an incredible honor to be asked to help them. We’ve already set up our first meeting time and place and I’m anxious to get started. If you’re in the Elizabeth City area and want to attend the caregiver’s meeting it is going to be held on Tuesday, July 17^th at 10 a.m. in the Albemarle Veterans Primary Care Clinic, 1845 West City Drive, Elizabeth City, NC. Although this is sponsored and supported by the Veteran’s Administration, the meetings are open to all caretakers in the general public.

The Immortal Alcoholic’s Wife is finished and currently being read by my daughter and grandson. When they have finished reading, it will be offered on this blog. The one offered on the blog will be “bare bones” in a simple PDF version. A real e-book version will be out within the next couple of months. I know many of you have been chopping at the bit for this book and I just don’t want you to have to wait any longer.  My hope is that an agent might take an interest in representing me to a publisher.  

Riley’s health condition has improved, but the brain function needed to live on his own is just not there. He is unable to walk on his own and therefore unable to tend to his bathroom needs. We don’t know for a fact that he had another stroke, but his right side is only minimally functional. He has stopped pleading with me to take him home, but I am still trying to find a different facility for his long-term care.

As far as my health goes, I’m now able to get through the day without a nap. I still rest in the afternoon, but I seldom fall asleep. I have made an appointment with a primary care doctor who has an excellent reputation as a diagnostician. I won’t be starting my food program until I’ve managed to eat my way through everything in the freezer. Once it’s empty, I can move it to the Outer Banks and just buy the appropriate foods that I need each week. I’m still not getting enough exercise, but also will change when I make the move.

I have a lot to celebrate. Even though I’ll be cooking only for myself, I won’t let that stop me from having some of the traditional 4^th of July favorites – my yummy potato salad, curry-ginger deviled eggs, grilled steak, and fresh fruit salad… This year I think I might have some sparkling cider to toast to my survival through insanity.

Live cells v. dead cells...

Last week Riley had an appointment with a Veterans Administration doctor in order to set up a primary care relationship with the local VA clinic. I had originally thought it was an evaluation for his disability compensation claim, but I was wrong. This appointment was only to do with his request for VA medical services.

I’ve heard a lot of horror stories about these clinics and the medical staff. If this clinic is representative of other centers, those horror stories are without merit. I found the clinic to be very clean and well equipped. The staff was friendly and cooperative. Things felt as though they had all been trained in the art of efficiency and customer service. I was impressed.

I was also impressed with the demeanor of the doctor that had been assigned to us. He was knowledgeable and spoke to me as one human being to another. He didn’t use medical-eze which would leave me running to Wiki to find out what he had said. He was a real person who used his own personal experiences to show that he understood what we had been going through. He explained and when I left I felt we had a plan of action and I knew the consequences of all the possibilities.

While we were all talking and relating, he was examining Riley. It wasn’t a huge exam. There was no disrobing or standing and touching his toes, but rather simple things.  To a lay person it might seem that he did next to nothing of a real exam. That assumption would have been wrong.

This is what I learned –

The liver can, in fact, regenerate new cells and continue to function. However, there must be a sufficient amount of LIVE cells for regeneration. DEAD cells are just dead. They cannot regenerate. The just remain as scar tissue impeding proper function. If the liver has been constantly asked to recreate itself over and over again, it will get to a place where the regeneration cannot replace all the cells that have been killed by the intruding factor. New cells WILL regenerate, but the question is will it happen fast enough?

The only way to really determine how much of the liver is functioning is to do a biopsy. It’s a simple procedure of inserting a needle into the liver and withdrawing a sampling of the cells. Without the biopsy there is no way of telling the percentage of dead cells versus the live ones. However, the procedure generally causes heavy amounts of bleeding. Alcoholics are susceptible to having bleeding issues and are not good candidates for the biopsy. In Riley’s case the risk of him bleeding out is not worth taking the chance that a biopsy would present. So for Riley -- we don’t know and we won’t know how much of his liver has the capacity to regenerate.

The same theory works for LIVE cells and DEAD cells in the brain. However, the brain is not as forgiving as the liver. Alcohol anesthetizes many of the cells so that they do not function properly. Other brain cells are simply killed off. As the alcohol stops entering the brain, these anesthetized cells seem to wake up and start functioning again. But the dead ones are just gone forever.

It is obvious from observing Riley that he has made a remarkable improvement. However, he is now about a month from the heart attack and the condition he is in currently is about as good as he is going to get.  He will have very good days and very bad ones. But this is what it is and this is what it will be.

I’ve been trying to visit Riley at least every two days. Sometimes it’s longer. Visiting him less often allows me to see his progress more clearly. If I see him every day the subtle changes may not be as noticeable to me.  And I DO see changes. His eyes are much clearer and skin is not as yellow. He doesn’t mumble so much when he talks. He is able to follow a conversation – to a certain degree. He is also developing a desire to maintain his personal cleanliness and keep track of the schedule. He knows that does NOT want to be there. He wants to come home so that he can drink.

 S..i..g..h..

This puts me in a Catch-22 position. If he stays in the facility, he will not drink and live longer and healthier. If he comes home and can get alcohol, he will most likely die within a year but be happier about where he lives. I would like to say that this is about the “quality” of his life. But that is subjective. What would be a quality life for me would probably make him miserable.

There is the issue of having him come home endangering my health. Caretaking him has had a huge negative effect on me personally and medically. I have no desire to die. I asked Riley how he would feel if he came home and then woke up one day to find me dead on the kitchen floor. His response was that he would be worried about who would be taking care of him now. WOW!! There was no expression of regret or even that he would miss my company. His only concern was how my death would possibly upset his living arrangements.

The doctor at the clinic has noted in Riley’s file that he should be institutionalized because he is a danger to himself and others due to the fact that he will not stop drinking. Even if Riley is not displaying any outward signs of needing hospice, he is still terminally ill which will only be intensified by his return to drinking.

On my plate for today, I must request a comprehensive neurological psychiatric evaluation to determine if he is competent to make his own decisions. If he is deemed incompetent, he will not be able to make the choice of staying in a facility or coming home. If he is, in fact, competent he will be allowed to make his own bad choices. But… really… isn’t that what he’s been doing all along??

Help me help Anonymous...

I would like to refer my readers to a post written on March 14, 2012 "Crying wolf..." Not only is this post appropriate for the current time, it also contains a comment from a person who needs a little help.

This person is addicted to alcohol and drugs and has managed to achieve some sobriety after a visit to rehab. Currently he/she has slipped and is struggling to get "back on track." I'm asking all of my readers who have been in this position to please offer some encouragement and support.

I'm not an alcoholic so I can't ever truly understand to my core how difficult it is to "get a gripe." I know my limitations. So I'm reaching out to all of you to help me help Anonymous find the way back to sanity.

Thank you very much --- Linda

To Anonymous (the last commenter on "Crying wolf...") --

I hope you are reading this and will know that the support here is heartfelt from people who could have written your story themselves. Please reach out and return to a life filled with possibilities.

Linda