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.