Thursday, March 17, 2022

We Have Lost Control of Our Journey!

When Pam first received her diagnosis and the doctor strongly advised against traveling, I thought that it was wise to shut down this blog.  Without talking about exciting places and the trials and tribulations of traveling in a motor home, there was nothing worth talking about.   I have recalculated that decision.  The journey that any human must travel after such a devastating diagnosis  is enormous.  And so is the journey that a caregiver must go through.  Those journeys (or is it really one journey?) will become the focus of this blog.  The content may not be as exciting.  And if that means that you chose to stop following, I understand.  If asked, I will remove you from the subscriber list.  While thinking of the long-term outcome is something I am trying to avoid, it has made me examine, understand and explore a whole new realm of myself.   And we will be talking about that.
I have known since the  age of seven that I was going to be an engineer.  It is how my mind works.  When I see an object, my mind starts exploring how it  could be made or how it might work.  Pam often jokes that I am the "typical engineer".  Whatever that is.  And I often joke that every problem is an engineering problem.    Once I was having a discussion with my boss about some current issue within the organization and that there was a lot of emotion in the group about the issue.  I was relatively new and he said that he wasn't sure how to assess where I stood on the issue.  My reply was very simple..... "it is all about the data, and emotion is just more piece of data".
And what that means is that throughout most of my life,  I have tried to control (suppress) my emotions.  I hold them deeply private and have tried to keep it that way.   That being said, this dementia stuff is very emotional.  At this  point, Pam is pretty self sufficient.   She can't drive and she can't be responsible for her meds, but otherwise she can take care of herself.  I try not to think about the long-term because I get very emotional and it draws tears.  This is just not how anyone would imagine the last few years of your relationship working out.  Now that we are retired, we have the time and resources to enjoy times and places that we did not.  But after almost 50 years of marriage, we are in this together.

As early as we are in this new journey, it has made me examine my feelings much more closely.  And that is not the only change.  All through school, I detested language.  I ate up any math or science classes, but detested language, and to a lesser extent, history.  I have come to find out that writing about this stuff can be very cathartic.   I am finding some peace in just sitting here writing about my past or my present.   I am amazed (or is it appalled?)  that I am enjoying writing.  So buckle up those seat belts.  Heaven knows where this blog is going to go.

Now for an update on Pam.... As I mentioned, she is getting excellent health care.  I can't say enough about Generations Geriatric Mental Health.  The staff is very knowledgeable and very caring.  They listen and then try to guide you to a path that helps you achieve the best day-to-day joy given the constraints of the illness.  The latest medication change has made a big difference.  It can not correct the damage that has been done, but it can slow the progress.  She is having many more good days than bad.  And I would be remiss if I did not say the very same about her primary care physician, Dr. Ali at Elliot Family Medicine.  To us old folks, she is a young whippersnapper, but very knowledgeable and a great listener.  We are both very pleased with their care.

The symptom that is most frustration to Pam is the loss of any understanding of time.  She has trouble remembering what month or day of the week it is.  But worse, is not being able to judge time.  If she has an appointment at 11 am, she is often showered, dressed, and sitting in her coat and sun glasses waiting to go out... at 3 am.    I can explain, that we are not leaving for six hours, but she just can't calculate that.  We have a special clock and a weekly planner pinned to the fridge.  But neither can make up for the lost of the cognitive understanding of time.  She finds that very frustrating.

I can only hope that writing about this stuff helps me deal more effectively with it.  I know that our friends and relatives find the updates helpful.  I can only hope that writing about this may help others deal with similar interrupts in their life's journey.   Stay safe out here.

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