HOME: Blog Post #10

Home.

I have just arrived home after three weeks at home. Huh? I can't make sense of it myself.  It is such a strange feeling to be both "at home" and "away from home" at the same time. For the past three weeks I have been in my childhood home...in my childhood neighborhood... sleeping in my childhood bedroom. And helping to take care of my mom. And now, after a long day of driving, here I am at...

Home.

It's about 300 miles away.  But today felt like a thousand miles.  My husband came to join my parents and me (and brother and sister-in-law) for Thanksgiving and to drive back with me to our home. Pouring rain was our company for most of the trip today. About half way through the drive, our windshield wiper suddenly snapped and flew off the car. Of course this was on the driver's side in the midst of a downpour.  Fortunately, we were near an exit and didn't have to drive far to get a replacement. We were lucky.  Just a few moments of blurry driving, a scratch on the windshield, some extra time on our trip, and a small amount of money for the fix. No big deal.

Posterior Cortical Atrophy, on the other hand, is a BIG DEAL. It was so very hard for me to leave today. The past three weeks have been so difficult and so very sad. Posterior Cortical Atrophy is robbing my mom of everything. And now it is all happening rapidly. That blurry driving we had for a few moments before our exit?  That is what my mom experiences EVERY MINUTE OF HER DAY. Nothing appears as it really is. Her perception of everything is skewed - and there is no repair or replacement. It will only get worse.

Home.

My childhood home is a beautiful, warm, cozy place. It is a modest house, but filled with color and light. The house was built in 1966, the year I was born. Our family moved in when I was about 6 months old. The house is full of books and music. Photos of the family share the wall space with historic paintings of Lincoln and Washington and American Indian Chiefs. Swedish tiles adorn the wall above the kitchen sink and Swedish copper sits on the upper shelves of the piano room. My mom made all of the curtains in the house. (Oh, how I wish I had paid attention when she tried to teach me how to sew!).

Home.

I'm not sure where I want to be. I am relieved and happy to be here in my HOME tonight. My adult home. My couch. My bed. My schedule. My friends.  My walls. Etc.  But - I am so very sad to be away from my Home... to be away from my Mom and Dad.  Ahhhh.... how to describe this?  It is so impossible. It is so raw.  I've been trying to figure it all out.

My mom is my original home. Right? My mom held me warmly and safely and securely in that home for 9 months. She provided everything I needed to become me.

PCA is a cruel, ravaging disorder. It strips a person of sense of self, of sense of place, of dignity, of perception, of HOME.

We are moving into the next stage with my mom. We have hired an aide to come in part-time during the week.  My dad is my mom's primary caregiver.  He is AMAZING and loving and kind and patient and caring and devoted... and 85 years old. With both of us there it is a full-time, intense day. My mom requires an enormous amount of care and energy right now. She needs to constantly be reminded where she is, who is with her, what is happening in this moment, what has happened in previous days, what will happen in the days (and hours and minutes) ahead. It is a mentally and physically demanding "job" to care for her right now.  It is beyond anything I would ever imagine. It is beyond anything that she would ever imagine and she would be horrified to understand what is going on. Oh, mom. Oh, home.

So... what an honor. What a privilege to be able to travel to home - to my childhood home - to be with my mom and to tend to her.  To hold her, to bathe her, to walk her through the house, to feed her, to sing with her, to hug her, to dress her, to brush her hair, to laugh with her, to cry with her.  This woman - this HOME of mine.  And this is why it is so hard to leave. Even if it is just for a bit.  Just for a time to reclaim my other home, my "adult" home,  - to get my sense of bearing - my sense of place and time and, hopefully, HOME.

For now, Home.