Thursday, August 5, 2010

August 5, 2010

Today has been a rough day.  Mom is fine and Dad is having a pretty good day today.  But it has been a rough one for me.  As you know we are all trying to help Dad cope with the affects of Alzheimer’s Disease but it is so difficult when you are just starting out.  As I have been reading and researching and trying to empower myself about this damned disease it just gets – well – depressing.  My mother and I have spoken about it and we are both really not sure what the future holds or how to face the future.  But unfortunately, the future is here.

You may recall in an earlier blog entry a few weeks ago that Dad and I went to his doctor and it was at that appointment that the doctor made three very big decisions.  1)  The Excelon patch was not working very well so we’ll discontinue that, 2) Dad seems to be experiencing (and I quote the doctor here) a rapid decline, and 3) Dad should not be driving a vehicle.  Well, the three of us were in the car yesterday and I was driving when Mom suggested that Dad could drive for awhile.  I reminded them what the doctor said.  They both had absolutely no recollection of it.  In fact, to the point that it was just on  the verge of defensive.  Dad was absolutely sure that conversation never happened and Mom went on that she had absolutely no memory of that decision.  Puzzling.  I was SURE it would have been such an enormous change in what my father is used to that he would have surely remembered how much time and care and consideration both the Doctor and I took when bringing it up to him.

Well as you can imagine it was frustrating not only for me, but for both of them.  Not remembering that such a powerful, important decision had been made is so difficult for any of us to wrap our brain around.  And when you don’t recall you are suddenly desperate for what you perceive to be a lack of truth.  You want a definitive answer and having one person telling you, “this is the way it was” just doesn’t cut it.  You know how that goes – you swear it didn’t happen that way so you go back to the people who were there and ‘lo and behold they confirm that it actually did happen that way.  But you need proof – no, you require it.  Now the question is looming over my head:  will they now remember this decision or do I have to step in and take my Dad’s drivers license away?  Dear God in heaven, please do not put me in that position.  To add fuel to this potentially explosive decision – mom and dad both still read this blog.  So I’m going on what some of the experts say and I hope that Mom and Dad both understand that this is simply a tool to help them remember.  I’m putting it in writing and when they read this I pray that it is engraved in to their memory in a place that is easily and readily accessible.

Chemo fog has been a debate for many years but doctors have now all agreed that chemo can affect cognitive abilities.  They include:  a) word finding difficulties during conversations, b) short term memory lapses, c) processing speed.  I’ve seen it the past couple of weeks especially looking for words.  I remember that during the entire hospital stay last week Mom could not recall the word morphine.  She knew the medicine and knew the word but the connection between her mouth and where that word was stored in her brain was not working.  I could see the frustration on her face.  Mom has always, and I mean ALWAYS had a wonderful memory.  And she knew that chemo fog was affecting her ability to find certain words during conversations.  She still has some issues with that but we are hopeful that will clear up as the recovery process continues. 
Short term memory lapses are not frequent but they have occurred.  A couple of times she has asked if we did X, Y and Z and we had just performed them that day or the day before.  It is ok and I tell her it really is not big deal – it happens to most chemo patients and with what’s she has been through in the past couple of months no one would blame her if her brain took a vacation.  She laughed – stuck her tongue out at me and made a raspberry.  Knowing is easier than not knowing.  So for mom she pretty much knows the cognitive impairment affects of chemo and we know that it should pass in a few more weeks.  But what about Alzheimer’s patients? 

If you ask my father if he is sick or has a disease he will tell you no.  He feels fine but knows that every once in a while he may forget a few things. 

Mr Miller was my high school history teacher.  He was pretty tough but I loved his classes tremendously.  I remember that one day he said that if we ever had the opportunity to rule over a kingdom the one thing we should never, ever let the people do is learn.  I’d like to take that same idea and put a different twist on it.  If you ever have the opportunity to develop and spread a disease – never, ever let the people know they have it. 
Mom KNOWS she has cancer.  I KNOW I have psoriatic and rheumatoid arthritis.  But Dad doesn’t really KNOW  he has a disease.  Oh we talk about it a lot.  He’s been put in the uncomfortable position of having his son tell nurses and doctors and even bankers that his father has a disease.  But at least mom and I can wrap our brain around the concept that we have something wrong.  We can read about it.  We engage people in conversation about it.  But Dad – he does his puzzle books and watches his programs on television.  He has his daily routines and his rituals but he isn’t running to the computer or library to research what is going on with him because it hasn’t fully dawned on him that there’s something to research.

How can I put this another way?  You and I have a software program that is already loaded in our brain.  When we are told something is wrong with us, we immediately begin asking questions and taking a proactive stance to learn about it and fight it.  When my mother was first diagnosed with fibromyalgia years ago, they both did heavy research.  They read books, papers, and asked doctors and nurses and friends what to expect and how to treat it.   The same with me when I began getting ill and then finally after my diagnosis I researched and am still involved in learning how to conquer it.   The software was already there in our brains guiding us to a typical, proactive response.  Somewhere along the line did my father loose the software?  Did the trial version of his software expire and he is no longer able to access it? 

I adore my father.  I love him with all of my heart and I care about him so deeply it hurts sometimes.  I hate seeing this damned disease play its little tricks on the man who held me as a little boy.  He taught me how to fish.  He taught me how to escape the house should it ever catch fire (which came in handy when our house did exactly that in the 5th grade).  He taught me to slow down once in awhile and enjoy the little things life has to offer. He taught me how to change a tire, change my oil, and the best way to wash a windshield.  He taught me that its ok if you get cow crap on your pants and no, you don’t need to wash it off right away.  He taught me to drive a stick shift and how to drive with your eyes AND your ears.  He taught me how to tie a knot and how to tie my shoes.  He taught me how to fry an egg and the best way to butter your toast. 

So Dad, it is ok if sometimes you are not remembering things exactly how they should be.  It’s ok if there are days you don’t FEEL like you have some disease.  I give you my word, though, that I will continue to learn all I can so that you and I, together, can conquer whatever is happening to you.  We will figure out how to cope with it and we will play Chinese checkers once in awhile.  We’ll watch reruns of MASH and I’ll still bitch that you don’t put enough lunch meat in the sandwiches.   I’ll still sneak you some cookies when Mom isn’t looking if you will make your spice cookies once in awhile.  And I’ll always have a hug ready and waiting for you whenever you feel the need – and sometimes, when you least expect one!

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