There, But Not There

Dementia is confusing. 

Baffled. Dumbfounded. Lost.  No, I’m not describing the person with dementia.  I’m talking about you and me.

There I was, seeing  my mom, but not my mom.  She looked like my mom.  She sounded like my mom.  But she didn’t always act or speak like my mom.  Sometimes, she seemed okay, and I held onto those moments like a lifeline in a turbulent sea.  But then she would do or say something that would just floor me.  I didn’t know how to respond. 

My first impulse, of course, was to correct her.  Make her get it right.  Help her to remember that we talked about this very thing only yesterday, or even ten minutes ago.  I found myself starting sentences with phrases like, “Don’t you remember…” or “We just talked about that!” 

My dad was even worse.  He argued with her.  His demeanor  was angry and impatient.  Watching him interact with her this way upset me.  I began to see that she couldn’t help not remembering, and arguing with her didn’t help her remember any better.  I began to wish he wouldn’t argue with her, and then I started arguing with him about arguing with her.

I spent a long time being angry with my dad about this.  When I look back on those years now, I am more forgiving of his behavior.  He, after all, had to live with her every day and night.  He’s the one who was losing his spouse of over fifty years, piece by piece.  He’s the one who had no one to really talk to.  In the years before our family members became able to openly discuss what was happening to my mother, he was truly all alone.

The effect of all this confusion and anger on our parts was hard on Mom.  She became fearful, especially of my dad.  She started sleeping in a separate room, and told people that “that man” in her house wanted to hurt her.  This only made him more frustrated and upset, because he really was trying to take care of her of the best he could. 

Meanwhile, my sister and I were constantly emailing and talking on the phone about what was going on.  Things were getting worse, but we felt powerless to intervene.  After many attempts to help, and much angst, Mary told me we were just going to have to wait for something to happen that would force a change.

Something did.