Tuesday, October 9, 2012

The Caregiver's Lament.....

As I approach the four year anniversary of the diagnosis of my adversary (I've never felt comfortable with "illness" or "disease" or "syndrome") I am reminded that this blog is primarily read by caregivers who daily do things they had never envisioned themselves having to do.  They do it out of love often not knowing whether the patient has any understanding of the sacrifice they make.  While I certainly can't speak for everyone who has CBGD, I feel I may have some insight that may give someone hope.

It is a common symptom during the progression of the degenerative properties of CBGD for the patient to lose their ability to speak.  I can say with certainty that my speaking abilities are greatly diminished both in enunciation and my ability to properly choose words.  I believe that had I not been a trained public speaker and a bit on the talkative side, I might be mute now.  I believe that my "baseline" of verbal skills was better than most.  In other words, I had further to fall than most.

Writing is a different skill set.  Certainly my "skills" there have also diminished.  You need only follow my blog as evidence of that.  Writing allows me to construct an idea and then choose and re-choose the words I may use to convey the idea.  The process is slow and increasingly laborious.

However the "idea" remains vivid and organized.  It just seems that finding the way to express it may leave me.  Even my facial expressions and body language have withered.

The point I am clumsily trying to make is:  If I consider my baseline verbal and cognitive skills four years ago and extrapolate their degeneration moving forward, it seems very evident that I will be able to understand and, indeed, create abstract ideas and thought long after I am no longer able to demonstrate or acknowledge that understanding. 

This does not necessarily mean this is the case with your loved one or even me at some point in the future, but it seems plausible, even valid, that I may someday be fully capable mentally with no way to express it

The irony is, by the time I know the definitive answer, I will no longer be able to tell you.  The Caregiver's Lament. 

I took this from my office window a few days ago.


  1. Corticowhat: Old friend, You said some things that made so much sense. Thanks for your acknowledgment of caregivers... also, the concept of the skills you began with rings true. I, like you, was a professional communicator and I understand that it isn't always evident -- the fall that occurs because you began with a higher level of proficiency. Will others believe when it is too late and too obvious? A few of us out here know exactly what you are talking about. I am sure you have seen the subtle change in my writing quality. Take care and thanks again-- truly. Dan

  2. You continue to amaze me. I often lose words, too and I understand the frustration, although I'm sure yours is greater than mine. You continue to be an excellent communicator. Now, I need to catch up, as I've been away.

  3. I am a cregiver for my mom, she lives with me. Your words mean so much to me because my mom does not really remember much anymore so she does not seem to be able to communicate how she feels or what is happening. She just knows she can't do the things she use to. And with your help I have been able to explain to my children things that might be going on so that they can understand alittle better. My thoughts and prayers are always with you. Thank you.

  4. Dan,
    I have been somewhat confounded that you could still produce music despite your physical challenges, but I've grown to understand it now. Your music may be the last thing to go. Good luck brother.

  5. Your insight and perspective always leave me speechless and in deep thought...you inspire me often when I have challenges I'm dealing with...and help me understand more about life and how do help those who are struggling..Peace from NYC my friend. ~ Edward


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