Helplessness

I can't stand feeling helpless when someone I love is in pain or fear or feeling lost.

I can't pull my mom out of this hole. No cure, no treatment, no map, no clue.  Just mom, my sister and my wits in this hole.

When she was first diagnosed with Frontotemporal Dementia, the doctor handed me a packet of information explaining the disease, its progression and a list of resources (smaller than what I'd hoped for). But they never gave me anything to tell me how to be the daughter I now needed to be for her.  How to change the dynamic of our relationship so that she would accept the help I needed to give her. No brochure or pamphlet for that.

Mom is fiercely independent. "How the hell do I do this?" I thought walking out of the doctor's office and into the car with my newly diagnosed FTP mom.  I felt lost and deeply saddened.  So did she.  Neither one of us knew what to say on the drive home.  We could hardly breathe let alone talk.

Spending time together felt awkward and embarrassing for a while.  I fumbled for words, any words.  Everything sounded stupid, and it was never enough.  I wanted to fix this.  

There is no fixing this.

I wrestled with that for a long time.  I cried over it, I worried over it, I beat myself up over it until I was exhausted and tear stained.  I told my dad before he died (before her diagnosis) that I would take care of mom and I was handed the challenge of our lives.

So…I decided to sit with it.  Since I can’t fix it, might as well go with the flow.  Follow her lead to a new relationship for us.

In a lucid moment she once asked me to not make EVERYTHING about dementia.  She wanted to have fun and just be with me.  I can most certainly do that.

Now we go to Baskin Robbins for ice cream after grocery shopping and talk about dad, grandpa and my husband who takes her to get her hair cut.  She thinks he’s really funny (he is!).  Mom and I go to her favorite craft stores and talk about projects….and we let go of dementia.  I let her be the self she is that day.  We laugh more, we indulge each other more, the awkwardness has melted away.

We enjoy the present moment together because it truly is all that we have.  These things and more are what I want most to give her, while we are here together.

Kicking it back to my awesome sister. xo
Voyageur