Thursday, January 2, 2020

A Difficult Subject


Have you ever had difficulty communicating with a friend or loved one who was struggling with serious illness?  I know I have.  Should I try to act like nothing is different?  Should I tell them how well they seem to be doing to encourage them?  Should I invite them to talk about how they are really doing?

And what about the person who is struggling?  Should they try their best to appear “normal” as a way of trying to minimize concern and put people “at ease”?  How should they respond to questions about their well-being honestly, when they are not sure if the person really wants to know? Even though they would welcome the chance to be open with someone who really cared and wanted to know the truth.

As I continue trying to be transparent about difficult subjects like PD dementia, this strikes me as a significant concern for many in my position.  I would like to be able to put on my “Benzi hat” (my movement disorder doctor and PD palliative care research friend) and think about how he would address this issue.

I know he would do two things.  Use humor to “humanize” the subject and reduce any related fear.  Then he would address the topic “head-on” without mincing words.

However, I am not Benzi, so I guess I will try putting on my “Shaky Paws Grampa” hat and say what feels right to me.

What I want most from good friends and family is to be loved and to be encouraged to love them in return.  I am blessed beyond measure in this regard!  I couldn’t ask for more.  Not everyone is so fortunate.

I don’t want to feel isolated.  It is OK to tease me about memory problems.  I have always been a teaser, so that would help put me “at ease”.

I know that some people in my position might not feel the same.  They may want to keep their feelings and problems to themselves so as not to be a burden.  I truly understand that.  I just don’t agree with it.  After all, what is more important than for family and good friends to love and support each other?

After writing this, it was very interesting that what I want reminds me of my Uncle Howard, who clearly wanted the same thing.  That and the occasional dance with anyone who was willing.  I enjoyed reading this link from five years ago.  I was a pretty good writer.  Not so much today, but I keep trying.

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