FTD - Frontotemporal Dementia - early onset (40-60s) dementia. - Let's talk about it. Let's do something about it. While Heart Disease is on the decline (wahoo!) thanks to research and awareness. Dementia is on the rise BUT IT DOES NOT HAVE TO BE. Research and education today creates a HOPEFUL FUTURE FOR YOU AND YOUR CHILDREN. Read on :)
First – I apologize in advance, this post is an explosion of
thoughts, and may not be very orderly...
March 12th, 2015...
As I was getting ready for work yesterday, I got a text
from a friend back home saying “Thinking about you all today.” I was most definitely confused… but also
running late (as usual) so I temporarily dismissed it and continued to get
Fast forward 30 minutes, I’m pulling into the parking lot on
base and I start racking my brain again…what did Jess mean by that text??
And it hits me.
I am instantly overwhelmed.
Tears threaten my eyes and the wind has been knocked out of me.
Today is March 12th. Mom would take her last breath tonight, about
1am, two years ago.
How could I forget???
What kind of person am I?
And now it’s all flooding back. I’m not sure if it’s the guilt of forgetting or
just the shear reality check (or both) but I suddenly am overwhelmed and
wanting to hug my mom more than anything in the world…but I can’t.
To catch a few of you up, I relocated from Pittsburgh to
southern California for a job on Marine Corps Base, Camp Pendleton in
December. The job opportunity was one I
did not want to pass up, but I’d be lying if I didn’t admit I also saw
California as a fresh start. My family
and I spent almost 6 years watching dementia take away my mother and
And since March 12th, 2013 – we’ve had to bury my
mom, followed by my grandmother 6 months later (who also had frontotemporal
dementia (FTD), and then just this past October -- our grandpop—a man who loved
his wife so much that he stayed by her side for 67 years—and until my
grandmother took her last breath, slept on a chair next to her, refusing to
leave her side (if that’s not love, I don’t know what is).
Then to top it off, in early Nov, I had to put Woody down –
Woody was my mom’s dog that eventually became mine. He was in our family for 15 years.
So, needless to say, it’s been an emotionally exhausting few
years. And since I’ve been out here, I’ve
selfishly taken a break from it all. I haven’t
finalized this year’s benefit yet (thinking pig roast, everyone???), I haven’t written
on here in ages…
I’ve relocated the FTD bracelet from my wrist to my gear
shift in the car….
Heck, most people out here know nothing about my past at all. As Christina put it, “we are in the quiet
after the storm.”
My friend’s text brought me back to reality. And while it’s not an easy one to face – I spent
most of yesterday with a very heavy heart and holding back tears—this is reality none
FTD is a part of my family's past, it will be part of our future, and
while I may have forgotten, for a moment,
yesterday morning, FTD is part of
everyday life too, even in California.
Every time I mess up a word and say “drive” when I meant “fly”
or “spoon” when I meant “knife” – my throat tightens and my inner voice screams
“FTD! FTD! It’s coming!!” and I suppress my fear and externally laugh off the
mistake to the surrounding audience.
Every time I see my nieces and nephews, I pray to God they
are safe and ok.
I have not forgotten.
And so, in tribute to my mom on her death anniversary, and
to remind everyone out there whom also have loved ones with dementia, that as
hard as it is to see them in their current state – that’s not them, that’s the
disease; I want to close by sharing one of my favorite memories of my mom
before she was sick. A memory that
demonstrates her true personality – one that always thought of others first.
When I was 20, I studied abroad in England. My 21st birthday was celebrated
over there and I returned later on that summer. On my return trip, I had a 7 hour layover in
Chicago; which I was not looking forward to.
When I landed there, I turned on my phone for the first time in 8
months. I quickly skip through all of
the very outdated voicemails, but stop in my tracks when I get to the very last
It’s my mom’s voice.
“Hi Betsy!! I wanted
to surprise you in Chicago and take you around the city…but as usual, it’s
raining in Pittsburgh and my flight is delayed. I’ll see you soon! Love
I couldn’t believe it.
My mom was flying to Chicago to spend a whopping 7 hours with me. Of course, I’m crying with happiness and
laughing at the ironic circumstances.
My mind instantly gets to work.
Paper, I need paper.
I have none.
I go straight to the bathroom – paper towels will do. I find a table and lay out my paper towels
and begin to write.
I hold up my masterpiece.
“MOM, Welcome to Chicago.”
I look up her gate number, and head there with my “sign” –
ready for her arrival.
And I wait.
And I wait…
Nearly FIVE hours later, my mom arrives. I give her the biggest hug. She looks at me and says, “Well, I think we
have just enough time to buy you your first legal beer in the US before we need
to get on the plane back to Pittsburgh.”
And we do just that.
I did not see Chicago. But I don’t
care. I had my first legal beer in
Chicago O’Hare with my mom, who flew there only to give me a hug, tell me she loves
me, and get right back on a plane.
~I love you, mom.I miss you, mom.And I wont forget.~