Sunday, 8 June 2014

Living Through The Long, Lonely Goodbye

When Mom was diagnosed with Alzheimer's Disease on September 11th, 2006, a friend sympathetically offered support for the rough times ahead.  I remember thinking to myself  "we'll be fine, we'll deal with it".  Looking back I am amazed by my naivete and innocence...

I had no idea that there would be no relief from the annoying repetitive behaviours...that they would increase in frequency and intensity.  I had no idea that my mother would disappear as she was consumed by a disease that stole her memory, her ability to function in every aspect of daily life.  I had no idea how this disease would rob my mother of her life, and us of ours in trying to help her cope with a new loss every day. 

As we progressed further into this journey, another friend told me to try to enjoy each stage, and appreciate it.  (In hindsight I understand that she meant that each stage to follow would be worse).  I thought she was nuts - enjoy this?!  Seriously?!?   At the time I could not enjoy anything.  I was overwhelmed with pressures and responsibility.  I was a mother of young children and a daughter of an ailing mother.  I was pulled in so many directions and drowning in a melting pot of mixed emotions - frustration, anger, fear, confusion, grief.  I just wanted to be "normal", like other thirty-something mothers, taking my kids to school and play dates...not trying to manoeuvre through medical and social service minefields.   I wanted to go back to the days when my mother mothered me, guiding me through the labyrinth of life.  I needed my mom.

But, more importantly, my mom needed me.  She started calling me her mom.  Not as a joke, but in all seriousness.  I think that's how she saw me - as the woman who took care of her.  I don't like to think back to those days.  The kids remember me losing my patience...a lot.  I remember feeling like the world was crashing in on me...a lot. 

And it's a memory.  Almost eight years have passed since we received my mother's formal diagnosis...five years years since she went into long-term care.  She is at the end stages of Alzheimer's Disease.  She barely speaks, moves or opens her eyes.  She is trapped in a failing body that imprisons her.  I can only pray that she is at peace in there, and does not understand where she has ended up.  

I now understand her better...why she was so afraid of getting this disease, and how brave she was to live with it, all the while enduring the daily torment of knowing what was coming.  My poor mother.  My brave mother.  My beloved mother.
I think of her constantly...and smile at how life has changed, and how much she would have loved this phase.  Sara is almost beautiful, graceful and many ways a younger version of my mom.  Becca is blooming...with her many interests - especially her love of piano and ballet - my mother would have kvelled (burst with pride).  Abby is delightful and sweet, spirited and with a quick wit - Mom would have giggled at all her 5-year-old antics.  And now we are awaiting the arrival of "Baby Boy" (my soon-to-be nephew) later this month.  She would have been on shpilkis (bouncing off the walls) with anticipation of our newest family member...excitedly planning for his arrival.

This time around I am the backup plan.  Abby is so excited for the baby's arrival - because she gets to sleep over with her cousins!  She's priceless! That's what I am talking about, Mom would have had a field day with that one!

When Becca was born we dropped a sleeping Sara to my parents' place on the way to the hospital.  She awakened the next morning and asked my parents "how I got here?".  It became one of the catchphrases that my parents gleefully repeated with a smile and a chuckle for years to come (Dad and I still laugh about it to this day).  Mom made sure that Sara's first meeting with her little sister was an exciting event...from the ride down to the hospital, to coming inside the room, to the actual introduction: "Hi, I'm your big sister Sara, S - A - R - A".

Now the torch has been passed to me.  I will take my niece Abby to meet her little brother.  We will have a sleepover, with lots of fun planned, and then when it's time to go to the hospital we'll get him a nice stuffed animal and a balloon and head downtown.  So, as I plan for this exciting milestone, I think of Mom.  A lot.  I wish I could share these plans with her, and probably will...hoping that she hears me.  These are the moments that I desperately miss her, and feel the impact of the long, lonely goodbye.

But the torch has passed, and like the millions of other people who live with this kind of "limbo loss", when your loved one is effectively gone, but their body perseveres, our family will find a way to emphasize the sweetness in yet another bittersweet Simcha .  I will bake for Baby Boy's Bris, and we will celebrate his life with joy and gratitude and elation...and that is exactly how Mama would have wanted it.