These Things Struck a Chord Within Me

With my father's passing, I have done some thinking about my reasons for maintaining this blog.  The original intent was to use the blog honor him during his lifetime.  Now that he is gone, the opportunity to so honor him has reached an end.  I am finding, however, that there are still reasons to continue blogging.  Here are my thoughts:

To watch a man who, for over forty years, had only treated me with kindness... to watch that man be trampled by a disease that knows no mercy...  To see that same man stagger to his feet and fight back every time the disease knocked him down and to watch him keep fighting long after his most valuable traits had been taken... 

To observe a man who had labored day and night to feed his family and had, in so doing, become a highly skilled craftsman...  To see that man too reduced to turn a doorknob or put on shoes and to have that same man, not recognizing me as his son, come to me and, with a beaten down look upon his face, humbly ask me for a job...

To observe a man with the finest of reputations driven to the performance of actions which would, in time past, have caused him shame...

To hear a man who once had the best kept mind I have ever encountered... to hear him, broken and sad, say, "Everyone knows I'm an idiot."  ...and to know that when I walked him through our neighborhood, my neighbors knew him only as a man with no brainpower...

To see such a man and believe him to be a man worthy of recognition as a truly great man, and instead, to see him so cruelly used...

To observe these things struck a chord within me.  Something had to be done to try to restore to such a man some of that which he was losing.  I had to come to his aid; I could not stand idly by and watch his dismantling.  The record needed correction so that it might be known that a great man - not an idiot, an industrious man - not a sloth, a godly man - not a shameful one, was passing into eternity.

These were my contemplations as I, one day in early 2011, sat down at my computer and began tinkering with an idea that eventually became this blog.  I set it up well enough to show a proof-of-concept to my mother.  I was originally not sure the idea was a good one, but when my mother saw it, she seemed encouraged by what I had done.  So I kept working until, eventually, The Mosquito Machine became a pretty successful blog with a decent amount of traffic.

While my father yet lived, the blog served the purpose for which it was originally designed, for I was able to use it to help prevent Alzheimer's from eroding the respect afforded my father, to remind myself and the rest of his family that he was deserving of care no matter the difficulty in providing it, and to encourage us all that there were people interested in our situation.  I was even able to use it to encourage my dad, for though he could not very well understand what I told him about this site, I noticed, never-the-less, that he seemed to understand that something was being done on his behalf, and he seemed, thereby, encouraged.

Now that he is gone, I find that my original motives are somewhat faded to obsolescence.  A great man's honor was defended.  Memories of hardships are fading behind gladness that the course was stayed.  Stan Julin will never again face discouragement.

I find, however, that even as the original chord fades, other chords have been struck; other things resonate within me, compelling me to continue writing:

The first such chord is the striking contrast between our family's experiences and the things that are commonly said of Alzheimer's Disease.  Many believe that institutionalization is the only appropriate care for those afflicted with this illness.  I have heard it said that Alzheimer's care is too exhausting an undertaking for a victim's family... that the patient is sometimes destructive and even dangerous.  It is said that the Alzheimer's victim becomes a different person and that eventually that person will be gone altogether, leaving an empty shell, a non-entity, a breathing corpse. 

Having been with my father to the end of his road, I do not so much have a problem with what is commonly said of Alzheimer's Disease as with what is not said.  When he was diagnosed, no one told me that some of the best, richest, sweetest experiences I would ever have with my father were still to come.  Not mentioned was that the very hard effort of his care would be interrupted with many fun and funny moments.  I was informed that he would become an empty shell, but no one told me that he would not be an empty shell all of the time... that there would be happy moments when my father would re-emerge, in varying measures, to surprise me with a momentary renewal of our relationship.  I was amply warned of the hardship of care, but no one prepared me for the extraordinary joy of being able to sooth away the fears of a scared old man who needed a friend.  Yes, he forgot who I was, but I was surprised to find out that even when he did not know who I was, he almost always knew that there was something special about my relationship with him.  Yes, many of his good personality traits departed (though they always reappeared later for brief visits), but some of them never departed... and some of his personality flaws were suppressed along with his strengths, allowing his caregivers to enjoy his company in ways not originally anticipated.

These things too struck a chord within me.  Having seen and experienced the hardships of caring for an Alzheimer's patient, I do not blame those who elect to institutionalize, and I do not want to load their hard decision down with guilt.  Without a good support system, this disease can be as deadly to the caregiver as it is to the patient.  But there are people who have the strength, the support system, and the inclination to personally provide care for their loved one, yet are not sure that doing so is the proper course of action.  Should not those people know of the rewards as well as the damages?

Health professionals described my dad's condition as very advanced, and he exhibited every behavioral problem I have ever heard associated with the disease.  (I will not be sharing all details online.)  The experience was, in the final analysis, as bad as I feared it might be.  Yet it was simultaneously more rewarding than I could have anticipated, and I find within myself a desire to share some of the incredible experiences my family had, living with Alzheimer's.  Hopefully these experiences will strike a chord in the minds and hearts of others who read my thoughts, especially in anyone who has recently learned that a loved one is facing this disease.  This diagnosis is not the end of good things!

Other chords too have resonated within me in recent times, and therefore, this blog entry, is...

To be continued...

Click here to read the continuation of these thoughts.