Wednesday, August 11, 2004

tough to be 16

Bringing Patti home for an evening is increasingly unpredictable or at least it seems that way to me. In an effort to keep her ‘involved’ we try to include her in being around a couple evenings a week.


I’m learning that an evening at home could be boring contrasted to activities and interaction in a more institutional environment. Then again there is the factor of “attention”. I'm noticing Patti getting impatient when she is not somewhat promptly 'attended' to. Having a staff of attended care professionals can somewhat spoil a person.


Trying to accomplish anything when Patti is about can have rather dubious chances of succes. Moments of frustration for all are common. A sense of humor has to be a common thread or the whole experience will come unraveled. Sometimes you have to dig REAL deep to find that sense of humor.


When you don’t see a person every minute of every day you also tend to ‘notice’ subtle changes in symptoms. MS symptoms can be quite dynamic and ebb and flow over days. Patti could seem ‘better or worse’ depending on when you last visited.


The evening did have a peculiar twist. Megan is working on a summer project on presidential elections. Like many teenagers, the fact that she cannot vote can get her up on a soapbox of outrage! One aspect of her project is to interview ‘voters’ as to what they really know about the issues.


Patti's MS related problems with cognition, reasoning, and memory were rather accelerated last night. Needless to say Patti’s ‘interview’ was quite enjoyable. Poor Megan could only seethe in frustration as Patti among other unique perspectives attempted to explain the “independent” candidacy of Ronald Reagan. <grin>  (Patti ‘knew’ Reagan had been in the news recently.) Megan may never recover that Patti has the right to vote but she does not. <grin>   -- It’s tough to be 16!

1 comment:

  1. Megan may never recover that Patti has the right to vote but she does not. <grin>   -- It’s tough to be 16!

    This is the best line!!  

    I understand the bitter sweet that seeps into your life be on a more limited scale.  See not only do I have MS but I have had a brain tumor removed too.  Mostly though, I was the primary caregiver to my fiancee who died of Pancreatic Cancer over the course of three and half years.  So I didn't do it as long as you have but I do know how one can truly get absorded into an illness.



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