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Providing non-judgmental and non-criticizing support for family and friends of end-stage alcoholics through one-on-one coaching, support groups, blog posts, workshops and public speaking.

Saturday, November 14, 2015

Five year journey to end-stage

On October 19, 2010 I began a blog about life with an alcoholic who seemed to defy all logically anticipated end-of-life expectations. I wrote humorous little stories detailing the absurdity of the things he did. I wrote about the past and the present, the good and the bad, the laughter and the tears. As time went on and months turned into years, I continued to write. I can’t believe that I’ve been writing for five years.

As the years past, the posts changed. I did more and more research and shared my learned knowledge with anyone who visited my pages. I thought to myself “this is good, useful stuff and should be shared in an easy to understand, easy to find format…” so I wrote the Workbook.

A few months into writing the blog, my e-mail in-box began straining at the seams until it was over-flowing with readers trying to contact me for some one-on-one interaction. I tried. I really, really tried to answer each and every one. But, my time was also becoming strained and I could not help everyone who reached out to me. So I started the support group on Facebook and eventually one on a private website. My thought was that these people could help each other. That worked and even though the private website group is no longer in existence, we know have the Forum on my Linda’s Front Porch website. The feedback I receive is extremely positive.

It was never my intention to help the alcoholics. My main concern was with the families who found themselves boiling in a pot of frog soup. It was those frustrated, lost souls, who searched for someone to just listen and understand.  But, apparently, I have helped the source of their frustrations. Many alcoholics have written to tell me that I changed their life with my blatant honesty. I’m thankful for that because helping the alcoholic also helps those who love the alcoholic.

It hasn’t all been accolades and flowers. My life has been threatened several times. I’ve been called names and accused of being a fraud. And yet, I keep on writing. I keep on trying to make a difference or to just provide some acknowledgement to those who have walked in my path. If I had not felt in my heart that all of this was worthwhile, I would have quit a long time ago.

When I read back over the five years of posts, I can see that my attitude has changed. I now have trouble finding a lot of humor. There really isn’t much laughter when you are watching the life slowly slip from the body of a person who was once so physically active. Changing the underwear of a man who screams in pain each time you try to wash the feces from his bottom, does not conjure up any comedic scenes in my head. When I enter his room and he thinks I’m his mother or his dead son, I do not feel amused.

I could tell you about how he thinks his trip to the nursing home for respite was a trip to the White House where he was assigned a special Secret Service Agent for his protection. I could tell you about his believing that a White House chef now prepares all his meals. I could tell you that he doesn’t understand why I am allowed on board his submarine because wives are not supposed to live on board. I could tell you about all the crazy hallucinations that have become a part of our “normal” life. But, it would just be nonsensical rantings of a woman driven crazy by living in the absence of sanity.

This is end-stage. This is what it is like to “see it through” to the very end. It’s not fun. There is no humor except in the mind of the person requiring the caretaking. I’m told he could rally and live another year, but will not regain his mental capacity. Or, he would be gone to his great submarine mooring in the sky within six months. There is just really no way of knowing. It’s a one-day-at-a-time situation.

If you are an alcoholic (or even suspect that you might be), take a long, hard look at how things have changed for Riley over the past five years. Do you want that for yourself? Do you want that for those who love you? And, if you think that it would never be that way for you – do you really believe you will have the ability to control your bowels or your mind when it turns to a gooey mass surrounded by your cranial skull? Think again. No one is immune.

If you are the caretaker, know what is ahead. Plan for ways to garner as much support from family and friends as you can. Do it know before you find yourself trying to hold logical conversations with someone who doesn’t know which planet he is inhabiting. Do your paperwork. Put your (his/her) affairs in order.

That’s what I’m doing this week. I’m doing all those little things that will make the end easier when it is actually here. I’m making preparations for his body. I’m filling out the papers for his burial at sea. I’m making arrangements for what would be appropriate for a memorial service.

I’ve been told that I have the ability to find humor in the most serious of situations. I truly hope I will be able to put that back into action over the next few months. I seem to have lost that lately.

Wednesday, November 4, 2015

Plan for the worst

I read that a commenter took a “life expectancy” test to see how long she and her alcoholic can expect to live. I went to the website she used and did the test for both myself and Riley. I should die at age 80 and he should be dead within 3 years. I was impressed because in my gut, I think I really can live to age 80 or maybe even longer. Riley’s result didn’t surprise me at all, but, let’s not forget that he IS The Immortal Alcoholic AND he is in hospice, so all bets are off when it comes to his exit date.

I guess this test is a good one for a general ball-park for some planning. But, I find it to be a bit deceiving when it comes to determining the lifespan of an alcoholic. There is so much more to that calculation than a few questions can determine. Like, how much does he drink? Does he drive drunk? How much actual food nourishment does he get? What are his lab result numbers?

If the alcoholic is at end-stage there are a couple of tests that can be done to determine an approximation of how much longer the alcoholic will be around. One is the Child-Pugh Test and another is the MELD Score. Each of these tests uses information from Liver Function Test (LFT) lab results that contain the levels of Serum Bilirubin, Serum Albumin, and Serum Creatinine and the Prothrombin Time (INR).

More information about the calculation of tests can be found in The Workbook for Caretakers of End-Stage Alcoholics. You can download an interactive book or order the “already put together” paper in a binder version – both ordered through this blog or by clicking the links to the store on Linda's Front Porch.

While both of these tests are good measurements of an alcoholic’s life expectancy, the person doing the calculating must remember that the numbers are only good if nothing changes in the alcoholic’s drinking. The caveat after determining the result is, for example, “there is an 81% chance of the alcoholic surviving one year if the alcoholic continues to drink at the same rate as he did at the time of the test.” So if the alcoholic takes the test and has an 81% chance of living for another year, and then he quits drinking for a few months (or however long), the percentage is no longer a good representation.

There’s a lot more to determining how long an alcoholic will stick around than just the liver function. Other parts of the body are also affected by alcohol abuse, such as, heart failure, brain damage, kidney failure. It’s easy to be misled that each time an alcoholic quits drinking means his lifespan will increase. That’s not always the case. Each time the body goes through a detox, it is weakened in some degree in various ways.

If there is one thing I’ve learned over the years, it’s that every alcoholic – just like every regular person – is different. Some alcoholics die within a short period of time without ever going through a detox while others seem to be immortal. I believe there are so many factors that we just can’t determine all of what contributes to the death of the alcoholic or how long the body will accept the abuse.

My suggestion to those of you who are trying to plan for your financial future – which I encourage everyone to do – is to plan for the worst possible scenario. Plan as though the alcoholic will be with you for the rest of your life. If he becomes as ill as Riley, there will be expenses you’ve probably never thought about.

If you can afford it, and your alcoholic isn’t at end-stage, purchase a long-term care insurance policy. They are very expensive, but if the time comes that you need it, you will find it is money well spent. Also, take out a term-life insurance policy – the kind that doesn’t require a physical or answering any medical questions. Investigate whether or not anything might be available to the alcoholic from other sources, such as, Veteran’s Administration or Medicaid.

Do the math. Create your spreadsheets. Work it out using every scenario possible. Then take the one that looks like you will be left with the least funds for life. Work on that scenario. Plan ways to cut expenses or add to the funds. Know what’s ahead because knowledge is the key to survival.

Saturday, October 24, 2015

Co-dependent -- a dirty word?

In my opinion, marriage is a co-dependent relationship. That’s the way it should be. The couple depends on each other as a unit in order for tasks to be completed or simply to make life easier for each other. Co-dependency works for marriages. Co-dependency is not a dirty word.

I read somewhere (I can’t remember where) that anyone who is involved with an alcoholic is most likely co-dependent. Well, that’s kinda like saying most skinny people do not like chocolate. I know lots of skinny people who absolutely adore chocolate just like I know spouses, parents, siblings, and friends of alcoholics who are not dependent on keeping the alcoholic drunk.

The word co-dependent seems to have been tossed around so much that we could just do away with “wife”, “brother”, “father” and any other relationship status titles. Kleenex is a tissue, but instead of saying “we need a box of tissue,” we often say “we need a box of Kleenex.” The name Kleenex has become the household word for tissue. The title co-dependent has become the household word for anyone related to an alcoholic.

What does it mean to be co-dependent anyway? Wikipedia defines co-dependent relationships as a “type of dysfunctional helping relationship where one person supports or enables another person’s addiction.”

OK. I agree with the definition. I agree that there are people who depend on the drunkenness of their mate in order to get what they need. It may be that the way to get grocery money is to wait for the alcoholic to pass out and they take the alcoholic’s wallet. It may be that the alcoholic is more agreeable to suggestions of the spouse if he/she is snockered. It could even be that the only way the spouse feels like a part of a couple is for the alcoholic to NEED him or her – to drive them home or clean up their messes – which makes them a team and it could be the only way for one of the team to feel needed. I agree this is not healthy, but it could that to survive one must make the other believe they are truly needed.
I don’t agree that the title of co-dependent should be a blanket description for all people involved with an alcoholic. I believe there are far more people who trying to survive the outfall of the alcoholic behavior by any means possible. Most people do not depend on the lack of sobriety of their spouse, but they do have to find ways to work around it.

Personally the word “co-dependent” feels like an accusation. It is as though I have poured the bottle down Riley’s throat in order to keep him drunk. It feels that I am somehow to blame for his demise. I can tell you that alcoholics do not need help getting drunk, they can manage that all on their own. So let’s stop blaming the people around the alcoholic and place it back on the shoulders of the person who is really to blame for their situation – the alcoholic.
It also occurs to me that the ones calling the sober partners “co-dependent” are often the alcoholics whether they are in recovery or not. It’s a scapegoat for them. “I can’t recover because my wife is co-dependent and wants me to keep drinking.” Hogwash.
I have never heard from any of my readers that they have a need for the alcoholic to continue drinking. It has always been the opposite. My readers want the alcoholic in their life to stop drinking and return to a healthy lifestyle. No one is ever happy about someone they love vomiting all over the sofa, or, smelling like a garbage can. No one ever tells themselves in the morning that “It’s going to be a wonderful day because my wife will probably put dish soap on the pancakes.”
Everything changes when the alcoholic reaches end-stage. Rules and blanket descriptions just do not fit. By this time, it’s simply a matter of keeping your head above water in whatever manner necessary. It doesn’t matter what labels or titles other people may assign to you. I’m sure they mean well, but it doesn’t mean they are right. You are the only one who has to live with yourself when this phase finally reaches its end.  If you need help, seek advice from someone who has walked in your footprints. If you have not lived life with an end-stage alcoholic, you have no idea what you’re talking about.
Let me perfectly clearn – I absolutely do believe that co-dependency in alcoholic relationships actual does exist. I do not believe every relationship with an alcoholic is co-dependent. I believe it’s not the place of one person to label another.

Saturday, October 10, 2015

Leopards don't change their spots


I’m finally getting back to my quirky self. I’m feeling like I have found my sense of humor and my fortitude again. It’s been a long month but it has been worth the time off. I’m over the pneumonia and my blood tests indicate I’m getting back to normal. Well – normal for me is always just a tad bit off – so I guess I’m normal for me.

A giant-sized thank you to Sandy James for providing my readers blog posts in my absence. Sandy is a terrific writer and provides a different point of view. It is my hope that she will consent to being a regular poster.

Riley was in respite at a nursing home for eleven days. He also had pneumonia and a urinary tract infection. He recovered from those illnesses much faster than I did. I suppose if you have someone waiting on you hand and foot and are receiving daily visits from nurses and doctors, anyone would recover faster.

The reports from the hospice staff indicated that Riley was bright, chipper, and able to get himself in and out of bed and into his wheelchair. He was eating well and communicating during the times he was lucid, which wasn’t all that often. Everyone was pleased with how well his respite stay played out.

While Riley was in respite I had one, and only one, responsibility. I was to rest. I slept most of the time he was gone. There was no jumping out of bed fourteen times in a night nor was there screams of “HELP!” from Riley’s bedroom. No dirty underwear to change. No laundry to do. I did exactly as I was told. By the time Riley returned home, I was rested and better able to fight my own pneumonia.

He arrived home (via medical transport) late on Saturday afternoon. He was smiling and seemed happy to be back home. I made a bit of a fuss over him for a few hours. I cooked a favorite dinner of his followed by his favorite ice cream. When I wasn’t in the room with him, he would call me over and over until I appeared at his bedside. OK, I thought. He’s just wants to be sure I’m here. I understand.

Sunday was a day from hell. Riley had called me throughout the night and even though I did not run to his bedside each time, his calling left me sleep deprived. It was like that all day on Sunday and into Monday until his nurse arrived to check on him. What she said and did surprised me.

She scolded him like a little child. Then she asked why he had not gotten out of bed since he had been home. He said I would not let him. She turned to me and asked if that was true. I replied I cannot lift him and he can’t get out of bed without the physical support of another person.  She told me he had been getting in and out without anyone’s support while he was in the nursing home. He had enough strength to hold himself up and get into the wheelchair. All he needed was someone in the room to assist him, if he should start to fall. She then demanded he get out of bed and show me that he could do it. I was surprised when he did just fine without me (or anyone) helping him.

The next day, while the morning aide was here, I told Riley it was time to get out of bed. He moved himself back and forth and grunted and grabbed for the bed rails. He could not sit up by himself. I tried to assist him but he pushed against me causing him to fall back into bed. Once he was upright, we moved the wheelchair over so he could reach it. But he refused to put his feet flat on the floor or move closer to the edge of the bed. I put my arm under his armpit and tried to help him stand. He put all of his 180 pounds on my body, but refused to help himself in any way. I gave up. Got him back into bed and walked out of his room.

When the aide arrived, she once again told him to get out of bed and he did exactly as she said. WTF! Why can he get out of bed with her but makes such and ordeal with me??

I had a bit of time while he was experiencing some clarity. I took advantage of that time and asked him why he was presenting himself to be so helpless with me, but not while he was in the nursing home or when the aide and nurses were around. It took some time and lots of discussion but eventually I got my answer.

The problem was/is ME. He expressed that when I was around, it was my job to come whenever he snaps his fingers and do everything for him that he wants me to do. If I refuse to do what he wants, he will simply keep calling me and become more demanding. He says he doesn’t have to get to the wheelchair by himself simply because he wants me to get him there and if I can’t do it, he won’t get into the wheelchair at all. He wants the two of us to move back to the city and if I don’t want to move, he will be as big a problem as he can be to make me miserable until I agree to what he wants. He also revealed that he is treats me different because I won’t get him beer, wine or vodka.  I took away his booze and he is upset with me for that.

Well… that’s the most honest he has been in years! But when the conversation shifted over to him telling me that he would get Tim (his imaginary secret service security guard) to get him some booze, I knew the clarity has passed. He went on to tell me that he was treated much better when he was at the White House last week. OK – reality gone!

So you see – the problem is ME. The problem is that I haven’t abandoned him or treated him poorly. I am the focus of his anger and hostility. From my point of view, I need to minimize my involvement in his daily caretaking. I’m in the process of figuring out how to do exactly that. If I don’t, I will be sick again from pure exhaustion of caretaking him.

I remember the days when Riley would manipulate me into doing something simply by being impossible to deal with. He would put me into situations where my only option would be to put up with whatever it was he was dishing out. He would leave me stranded when I had no viable means of transportation. He would spend all his paycheck before he got home causing me to have to go to the food back to feed the kids. All the while, he would show no remorse, no regret, and there would never be an apology.

Alcoholics don’t change even while dying. 

Sunday, October 4, 2015

No One to Save Me

Hi there. It’s me again. Sandy of takingbackme.net.  Linda didn’t seem to realize that when big time bloggers – such as herself – ask little time bloggers – like me - to write a guest post, it’s rather like feeding stray cats: we just won’t leave.  So while life continues to challenge Linda, I’m more than willing to write another post for her.

Last week I did something rather embarrassing.

I called an old boyfriend.  And not just any old-old boyfriend.  (And for those who have come over from my blog,  not the old-boyfriend as in the one who called me several weeks ago.)

No, this old boyfriend was that old boyfriend.  The one that you wanted to marry.  The one who wanted to marry you.  Just never at the same time it seemed.  The one with whom sex was crazy and emotions were deep and yet somehow things never quite aligned.  This was that old boyfriend whom, no matter how long since you’ve seen or spoken with each other, it seems the air is saturated with the sexual tension of what once was.  What almost was. 

What should be again?

But I didn’t call him to rekindle anything like in some cheesy,  made-for-tv movie. In fact, I felt quite safe in calling him since we are on opposite coasts. I didn’t want a relationship with him.  I wanted something more.

I called him because I wanted to remember who I once was. I wanted him to remind me what it was I loved about myself.  I called him because I wanted him - the history of him, the memories of him, the lost-potential of us – to somehow ignite something in me that would break the chains of an alcoholic marriage.

I called him because I wanted to flirt and smile, laugh and reminisce and through it all, be transported back to a time, back to a Me who was alive and passionate and thrilled about living her own life.

Unfortunately I got none of these things.

I barely got a conversation.

He answered the phone and was reasonably receptive when I identified myself though there was none of that “wow, an old friend” (much less old girlfriend) joy in his voice.

“Oh,” he said, mildly shocked.  “Hi.”

I explained that I was calling because I had found some old photographs, including those of a vacation trip we took, and so was just curious as to how he was doing.  I tried to be upbeat and casual but I felt my mistake the minute he said hi.

He explained that he had gotten a divorce about 15 years ago – which was actually the last time we had spoken –and  had gone on to meet someone with whom he had just moved to Washington state with.  He gave a cursory run down about what his now-grown children were doing and then politely asked, “so how about you?

I told him about my children, much younger than his and he said, referring to parenting, “oh so you’re still in the middle of it.

And that was it.  It was clear there was to be no long-winded phone call reminiscing and meandering down memory lane.  He did not want to talk and laugh and remember, all the while ignoring a sexual tension between us that seemed strong enough to come through the telephone lines.  He wasn’t interested in dipping his toes in the waters of what if or should-have-been.

He certainly DID NOT want to assure an old girlfriend with an alcoholic husband as to her continued beauty, power and worth or assist in, no matter how inadvertently, in igniting that fire in her belly for life.

I felt quite embarrassed and sought to end the phone call as quickly as possible.  Which wasn’t particularly difficult since he wasn’t particularly interested in speaking with me at any length.  I said with the most casual tone I could muster up, “Ok, well I was just curious as to what you were up to.”

He said bye, thanks for calling and that was that.

I sat there feeling like a fool. Not because I had called.  But because I thought he – or anyone for that matter  – was going to somehow save me.  I felt like a fool because here was a man who was obviously living his own life without a thought about me – and why would or should he be thinking about me after more than 20 years broken up  – and yet I thought he was going to somehow to rescue me? 

The alcoholic marriage doesn’t douse the fire burning in your belly for life and living with a one- time massive thunderstorm dumping tons of water on your soul.  No, the alcoholic marriage extinguishes those flames for living one little spark at a time.  Like a long, but constant and steady, sprinkling of rain.  Your soul just keeps getting wetter and wetter, darker and darker until you become a bit like Dorothy, in the Wizard of Oz.  You start looking all around outside yourself for someone or something to magically fan those flames.  You start thinking someone else can, should or needs to deliver you from the hell of living with a compulsive drinker.  You forget that nowhere is it more true than in an alcoholic marriage that what you seek is within yourself.

I wanted someone to make me feel whole again.

I wanted someone to make me feel alive again.

I wanted someone to make me feel like a better version of myself.

In lieu of that, I wanted a stand in. 

A 3000 mile away, we-don’t-even-know-each-other-any-more, hanging-on-the-coattails-of-what-was stand in.

But it never works that way, does it?

After my feelings of foolishness passed, I began to feel embarrassed.  Here he was living his life and what was I doing?

Then I started to feel that odd, misplaced resentment the human psyche is capable of:  how DARE he, live HIS life.

And then I started to get mad.

And then I began to feel determined.

And then I thought maybe I got what I was after afterall.

Friday, September 18, 2015

Why the alcoholic husband doesn't hate his wife

by Sandy James of "Taking Back Me"

Linda is overwhelmed with life these days and so I offered to write a blog post for her.  Hey, I’m not above hitching my rising-blog-wagon to the bright shining blog-star of a friend.  She accepted my offer and I was about to write a tongue-in-cheek post about how hard life must be for the alcoholic, married to us wives, but then a reader from my blog – TakingBackMe.net – happened to email me and I felt like I wanted to address it.

I had posted about my husband’s disdain for me and his nearly-total emotional withdraw from our marriage. A reader, with complete sincerity and interested, emailed me with the advice and suggestion that if I could perhaps find out why my husband was so angry toward me, it might make a difference.

I am not writing this to bust on her or make light of her advice.  But as I began a response to her, I realized the answer was far too big for just an email.

It was a full-blown blog post.

The mistake all us wives make initially is the idea that we can somehow, someway have a normal relationship with our alcoholic husbands.  We learn their buttons; we know what to stay away from and when.  We become experts at managing our marriage – and the alcoholic – to ensure the minimum amount of collateral damage.

And yet, in the early years anyway, we still think we can approach the alcoholic as a “reasonable” individual. We still think we can apply normal-human behavior and relationship-models to the alcoholic and the alcoholic marriage.

It stands to reason that if a spouse is particularly venomous or resentful toward his wife, that the wife might ask what it is that she has done that has created such hostility within him.  And he in turn might offer what it is that is gnawing away at him.

Not for the alcoholic.

The alcoholic does not hate his wife due to some unresolved marital issue.  The alcoholic doesn’t even hate his wife per say.  The alcoholic hates himself. The alcoholic is filled with self-hatred and self-loathing so deep and so pervasive that he can hardly not turn on the one closest to him.
Society as a whole has a tragically limited and flawed understanding of what alcoholism really is and how it really affects a person. I know before I was involuntarily conscripted into the army of alcoholics’ wives, I had only the most rudimentary “understanding” of alcoholism as well as the alcoholic.  I believed, like so many, that the alcoholic’s trajectory was plain and simple:

The alcoholic doesn’t know he has a problem.

The alcoholic hits “rock bottom” and realizes he has a problem

The alcoholic attends Alcoholics Anonymous and is thus “sober,” or

The alcoholic refuses to attend AA and remains a drunk.

Ignoring for now the debatable theory of “rock bottom” and the limiting notion of AA as the only way to sobriety - not to mention the misinterpretation that not-drinking is the same as sober- let’s just look at the idea that the alcoholic doesn’t “know” he has a problem.

If the alcoholic literally did not know he had a problem, then it would stand to reason he would be angry and resentful toward his wife when she insists he does have a problem. Imagine how you would feel if all your bills were paid on time, you had a healthy savings account and were debt free but your husband kept insisting you had a “spending problem.” It would drive you bat-s**t crazy.

Now imagine you didn’t pay your bills on time and you had no money in savings and you had tens of thousands of dollars in credit card debt and your husband kept insisting you had a spending problem.

Your anger would be totally different because you would know you indeed did have a spending
problem.  You would hate your husband for bringing up the topic.  You would lash out at him for forcing you to, if not outwardly certainly inwardly, acknowledge the issue.  You would project onto him all the disgust you felt toward yourself every time you took out that damn piece of plastic.
The alcoholic KNOWS he has a problem with alcohol.

In fact the alcoholic is scared as shit about his problem with alcohol.  He denies he has a problem but denial is not the same as not knowing.  Denial is a temporary emotion.  It does not last.  It certainly does not last when a wife is so bold and bitchy as to point out the problem.

Everything the alcoholic spews and sprays at his wife is a complete projection of his own inner turmoil.  I once read something about snakes: it said a snake can get so angry that it turns and attacks his own self.  To the alcoholic, his wife is the “end” of the snake.  He attacks her because he can’t attack himself.  The anger and fear, hatred and loathing is so great, he can’t possibly contain it within himself.  So he screams the most hateful, the most dreadful, the most vile, spiteful, vicious, cruel and ugliest of words at her.  There’s nothing she has done; there is no buried resentment, no marital issue to address that sees them both culpable.

It’s his own self-hatred unloaded onto her.

Plain and simple.

Friday, September 11, 2015

End of life reality

I don’t know why it always surprises me that Riley continues to be immortal. A few days ago we were told that he had only hours to live. The next day he rallied and he could live another year or more. We are living on a see-saw with Riley.

End-stage liver failure is a horrible way to die. I watch him as he struggles for words that fit the meaning of what he wants to say. I see the confusion on his face when I don’t understand what he’s talking about. Often he will be in mid-sentence and begin quoting phrases from books that he has read in the past.

Riley cannot control his bowels or his bladder. He doesn’t seem to have any cognitive awareness of his lack of continence. However, he will pick at his diaper until he can get it loose and remove it from his body. He then wants no covering and just wants it to be in the breeze -- so to speak. He has other people clean the feces from his buttocks, change his clothing, and give him a sponge bath.

There is no longer any sitting in his favorite chair or going to the kitchen and getting a snack whenever the mood hits him. He now has to ask for everything he wants and he must ask to be moved from one side to the other in his bed. He no longer has strength in his legs or arms to turn himself.

His appetite is about one-quarter of what it used to be and he doesn’t have any enthusiasm for his favorite foods. He won’t let anyone feed him and he ends up with most of his meal on the front of his T-shirt. Last night he decided to put his plate of tacos on the bed next to him so he could share it with the dog. The sheets were covered in taco stuff and the entire bed had to be changed,

The one thing he knows for sure is that he wants a beer or a drink. It was suggested that we try giving him a non-alcoholic beer to placate him. We tried that and the results were a disaster. He became the narcissistic, demanding, controlling drunk that he was when he was drinking. He was drunk on the “idea” of being drunk. There was no alcohol in the beer, but drinking the beer set off that ugly personality into motion. That experiment didn’t last more than a couple of days.

Even though he is NOT drinking and not even “pretend” drinking, he still thinks he is in fact drunk. When asked how he is, he’ll say that he’s pretty good considering he got really snockered last night. Or he might say that he “tied one on” or he’s “shit-faced”. Of course he is not any of those things because he does not get alcohol. But if he thinks he is and is happy with that, then I’m OK with that.

Riley doesn’t understand that we are not the typical married couple and believes our marriage has always been that of a loving devoted couple. He’s very proud that we’ve been married or “together” for nearly 50 years. He doesn’t remember that we were separated for more than 15 of those years and that we are only together now because he was sick. He looks round the room and wonders where are his friends? He doesn’t understand why he gets no phone calls or visitors. There’s a look of sadness when I remind him that his friends have died of alcoholism and the ones not dead didn’t want to put up with his egotistical, narcissistic, demanding personality. He doesn’t believe me. He thinks I’m keeping them from him. Whatever.

I know that most of the drinkers who read my blog will not use this information as a means to realize the end consequences of habitually drinking in excess. After all, they are alcoholics and possibly cannot make the logical link between Riley’s situation and their own drinking. That’s too bad because Riley is the reality of an alcoholic’s end-of-life.

The demands of caretaking Riley grow every day. I do have help, but for the majority of the day, it’s just me. I do it all. I’m tired – exhausted actually – and I’ve been sick. I find it difficult to keep up with my other responsibilities, like posting regularly on the blog or answering my e-mails. I want to be there for all of my readers, but it is a rare day when I can have the quiet time needed for writing.

We have a new hospice company and more help is on the way. So I ask all of you to please be patient with me and give me some time to get over this sickness and get my additional help set up. If you are “jonesing” for some of my stories, purchase my new book “That Reminds Me.” It is pleasant diversion from all the alcohol nonsense. Use the discount code: 2FX8X5C2 when you purchase through this link: https://www.createspace.com/5620032. This code is not good on any other purchasing site.

In my absence, there will be some guest posters with great information and points of view. I hope you will stop by and see what they have to offer.

Thank you everyone -- Linda

Sunday, August 23, 2015

Sick vs drunk caretaking

I often hear people telling me that I can’t possibly be a good caregiver for Riley because of all our past history. I’m told that it makes me hostile and that he would be better off in a nursing home. I don’t agree with any of that nonsense. I made a commitment to both my daughter and to Riley to “see this through” to the end. That’s what I intend to do.

When Riley returned home after having been in a nursing home for a week so that I could get some respite, his health had greatly declined. I called the hospice office and told them I believed that Riley had a bladder infection and that I needed a prescription for something to treat it. It took more than two weeks for someone to come get a urine sample for testing. Then it took about five days for the lab to report that he did, in fact, have a urinary tract infection. We received the medication late the next afternoon.

While we were waiting for the medication, Riley became increasingly sick. By the time I got the first dose into him, he was spiking a temperature of 100 degrees, was not eating, could not get out of bed, could not move his legs, had blood in his urine, and was hallucinating. I monitored him through the night and gave him Tylenol to try to break the fever. It reminded me of the times when my children would become ill and I would do everything I could to try to nurse them back to health.

I know and understand that Riley is in hospice and no heroic measures will be taken to prolong his life. But, it seems to me that the degree of his UTI seriousness should have been attended to in a more timely fashion. I don’t know what hospice was thinking. Was the attitude, well he’s dying anyway so there’s no hurry to do anything for him? Where does the line get drawn between what they will do to alieve his discomfort and just letting him go? If his arm was broken, would they not set it? If he fell and injured his hip, would they treat the injury?

It makes me angry because I was told that things of this nature would be treated. AND they did treat it – eventually. As of this morning he is feeling better and hopefully the UTI is going away. So, the next question, (asked by a well-meaning friend) what difference does it make to me? He’s a drunk who so abused his body with alcohol that he is fading away. With all the misery he has caused me in the past, why do I care that he has a UTI or anything else debilitating for that matter?

There is a point in time when the caretaker of an end-stage alcoholic switches gears and just becomes a caretaker of a sick person. Overall, it is difficult to be Riley’s caregiver. Not because of the indiscretions of our marriage, but because he brought this illness on himself. After years of doctors, family, friends, EVERYONE telling him he would kill himself with alcohol, he believed, and still believes, he is invincible to the consequences of alcohol abuse. I know, I know. It’s called denial.

That’s what makes it difficult for to be his caregiver. In Riley’s eyes, I am to blame for him being in the situation he is in. If I had not called the paramedics when he had his heart attack, he would be dead and we wouldn’t be going through any of this. Because I am to blame, he feels no drive to do anything for himself. I am to simply do as he says and do them the way he says for me to do them. That attitude did not work for him when we were a couple and it certainly doesn’t work for him now. But, I have to give him credit for consistency and perseverance – he keeps trying.

If Riley had never been an alcoholic and got cancer, I think my attitude would be different. If Riley ever once said “Gosh, I really screwed up” I would have a softer attitude and be much more attentive than I am. If he ever apologized for having to ask me for anything – anything – I would be more agreeable to meeting his needs.

However, when Riley was lying in his bed last night and I could see the discomfort on his face, I actually felt sorry for him. I wasn’t sorry for him being at the end of his life. I was sorry that he was sick on top of the dying situation. I wanted to help him so he could get some rest and feel better the next day.

When Riley was drinking the caregiving issue was very different. The goal then was to keep him contained so that he could not be a danger to himself or others. I didn’t try to cure him or force him into taking care of himself. All those detox and rehab experiences taught me that he would never cooperate in his own healing. My attitude was one of acceptance for what was never going to change.

We are now at the end result of his drunkenness. His party is slowing coming to a close. It’s time because to continue on is just a means to make him more miserable. I will not do anything to hasten the closing of his doors. I will let it run its course.

However, I will not stand by and let him suffer with a side-car illness that can easily be treated and resolved. To me, in my opinion, that is simply cruel and excessive punishment.

Tuesday, August 18, 2015

For his little brother...

I received the following letter from a reader and it moved me to a point where I knew I had to share this with my readers. If you read my blog, then you know the frustration of trying to help someone when all help seems futile. Please take the time to listen to the song and follow along with the lyrics included below. -- Linda

Hi Linda,

My younger brother has struggled with an addiction to heroin for about 6 years. It has ruined his character, destroyed his self-control, and robbed him of all of his money and possessions. Our whole family has tried to help him recover through several different rehabilitation services, but every attempt to save him from his addiction seemed to fail.

At one point, he begged for money living on the streets as we let him try to find his “Rock bottom,” but we realized this wasn’t going to heal him or improve his situation. We eventually tracked him down and we haven’t given up hope that he will change.

I know in your line of work, you are familiar with hundreds of stories similar to ours, and I know there are countless people who struggle to overcome addiction. I have learned that it is a far-reaching issue that devastates individuals and their families.

I wrote a song about my brother’s experience, and recently made a music video depicting some of his struggles. We are finding that this song and music video are educating, inspiring and empowering not only for addicts and former addicts, but also family members, and others who have never even had to experience watching a loved one being addicted.

That is why we want to share it with people like you. Please feel free to publish, share or forward to anyone you think might benefit from this song: https://youtu.be/j6TYySh5KfY

Thanks for all you do,
Rick Hale

I was very impressed when I heard this song and knew that I must share it with my readers.

Here are the lyrics so you can sing alone:

The muffled sound of old regrets
Burning out like cigarettes
Halfway gone and half to go

Fill the air with darkened haze
And all my empty yesterdays
Have brought me down a deeper low

And I can hardly breath it in

What if there’s no end at all?
How much further can I fall?
Getting higher as my life’s descending

Something’s taken over me
I’m not the man I used to be
And I can’t take it if it’s neverending

I know it’s hard to understand
You’ve only breathed it second-hand
But never walked inside these shoes

You hope someday I turn around
When I’ve crashed against the ground
And I have nothing left to lose


Trace the marks across my skin
Laying draped around my frame
They tell the story of my sin
But you turn your back and wash your hands of all my shame


Sunday, August 16, 2015

Coming to my senses

I believe strongly that knowledge is the key to survival. It goes right along with knowledge equating to power. The more you know the more powerful you can be.

I suspect that Riley’s cancer has returned. There are physical indications that tell me that something is “off”. It really doesn’t matter if the cancer is back or not. He is already in hospice for end-stage liver disease and a confirmation that his cancer has returned will not change that. He will not get treatment for the cancer both because he is in hospice and he has stated that he wants no more chemo or radiation. So, really, what’s the point in putting him through the round of testing (which takes months) to determine if any Tommy the Tumors have returned?

A few weeks ago, Riley was in a nursing home for five days while I had a little respite. When he returned, he told me that he had not been given his medication correctly. I thought he was just talking nonsense until I observed his behavior. He definitely was off his meds. Since he was home and I manage his medication, I got him back on track with his dosage and schedule.

During that time, Riley was belligerent, controlling, passive aggressive, and telling the world that putting up with him was what I get for having saved his life so many times. It was difficult but I preserved. I know it’s just garbage coming out of his mouth because he is re-acclimating to the meds. But… still… it’s so very frustrating.

To top things off, we had a new hospice nurse who believed everything Riley was telling her. Oh poor Riley, so misunderstood, so alone, so unloved… blah… blah. I wasn’t in the room, but from what I understand, that was the gist of what she was telling her. It was about his feelings, says the nurse. His feelings? Well, having feelings doesn’t mean you get everything you want, I reminded her.
She went on to tell me Riley was lucid and clear and could determine for himself if he took his meds or not. She also told that he belonged in a nursing home because I was harboring resentments from our failed marriage. Wait a gosh darn minute here!

Riley has been diagnosed with dementia by one of the best forensic psychiatrist in North Carolina. He has been diagnosed with brain atrophy by a prominent neurologist after having had an MRI. So where does this nurse get off telling me he is lucid and clear? Her response was that he answered all her questions about where he lives and who the president is correctly. And he also knew where the garbage can was in his bathroom. Oh! Well! Hey! That solves it! Of course he can make his own medical decisions! Anyone who understands that Obama is president and the garbage can placement, can certainly decide if he needs to take the medication that lessens his agitation or stops his nausea.

I hate those mini-competency tests that Medicare requires to determine the health status of a person in hospice. I think they are ridiculous. Only a person who is deeply into dementia would answer those questions incorrectly. Riley isn’t that bad yet. But he isn’t good either. He has illogical thought processes and knows the answers to those questions because he “resets” his brain every morning by watching news programs for the majority of the day. He seldom really knows who his grandchildren are and who the parent is of which child. Often he doesn’t even claim them to be his. Sometimes is daughter is his and sometimes not. He has no recollection that we were separated for 15 years and sometimes he says the separation was not long enough.

Over the last six months, the team of health care professionals who have been assigned to Riley have focused on making him more independent by encouraging him not to ask me to do things that he can do for himself. This new nurse ended her visit by saying I should just do as he asked when he asks and let him manage his care. So now, I’m called to his room to do everything that he can do for himself. We have taken 10 steps backward and if he had his way I’d just address him as “Master.” Well, that ain’t gonna happen and the battle begins – again.

It will take me some time to undo the damage caused by the new nurse. Of course, she’s not to come back here and I’ve been assigned a different nurse. In the meantime, I’ve had almost NO time for anything other than Riley’s care.

For the past few days, I’ve noticed that Riley has taken a downward turn. He is very weak, has no appetite and is very quiet. I’ve been watching him closely. I check on him often. I am concerned, but understand that this could just be the progression of his disease.

As I was leaving his room, he said “I’m happy that you’ve come to your senses and are following Nurse X’s advice.” OMG! He sees my taking care of him as being submissive and an indication that I’ll just do anything he asks. I talked myself down from the irritation of his statement and remembered that he is a sick man – a dying man. I need not respond nor let his statement upset me.

I wonder how long it will take for him to come to his senses and realizes that he, in fact, is at my mercy? Oh! That’s right – I forgot! He will NEVER realize that because although he is not drinking he still thinks like a narcissistic alcoholic.