Two Years

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 ready. 

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.

I forgot.

I forgot.

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 grandmother.

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 the less.  

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 one.

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 you!”
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.”  Perfect!

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.~




The Quiet After the Storm

~Written by Christina (Hall) Valencia

It has been almost 2 years since Mary (Mom) died, 18 months since Margaret (Nanny) has died and almost a year since our last post. Our family is experiencing what I referred to in previous posts as the quiet before the storm, except that it is now a quiet after the storm.  

While the quiet after the storm has allowed us to live a little without Frontotemporal Dementia (FTD) on our brain at every turn; it has not taken the want to make a phone call or share a story away. 

It is giving us time to prepare for the next wave of storms. But what does that mean?

To me it means, making hard decisions about what is best for my family and me. I have made a decision that at age 40, I will get tested for the gene. At 40, my girls (now 3 and 4) will be 11 and 12, old enough in my mind to understand and be able to formulate questions. 

I will have a plan for end of life decisions.

This quiet has also allowed me to enjoy my kids without the guilt that I felt initially for even possibly having the DNA that could negatively impact their futures. Although they cannot remember it, they re-share the stories that I have told them. Emma will remind me how Grandma Hall would try to catch her before she fell as Emma was learning how to walk, and Lil will tell me how Grandma Hall used to love to hold her. Both true stories created by the storm. These are good memories.

The quiet has brought Mary’s five children together, with their spouses, children, father and Mary’s father for a grand vacation this past August at one of Mary’s favorite places, the Jersey Shore (well not the Jersey Shore, but a place very close to it). At the shore we were able to have the kids who live states apart forge irreplaceable memories. My girls will never forget how cousin Henry (age 2) caught a fish with his bare hands, how he touched a dead puffer fish that had washed ashore. How Aunt Meggie, really had the baby that caused her to waddle the 1/3 of a mile to the beach, holding a row of hands, 8 in all, trying not to get caught on the street sign poles....How one day we watched as hundreds of dolphins migrated northward. 

Each of those memories and appreciation for what we have came to fruition because of our storm of dementia and the quiet that followed.

The challenge of the quiet, is the unknown longevity of it.  Hopefully it will last, but as it does, it is our responsibility to keep the energy of our initial drive to help raise money to cure FTD and raise FTD awareness alive.

This blog is meant to inspire and remember, and I challenge those who read it or have read it to share a short, long or short, about themselves or loved ones, either before, during or after their own experiences with dementia. Our family will be hosting the second annual Mary Hall Benefit for Dementia Research this summer. 

Please stay tuned for more information.


~In Memory of Jack Flanagan, Father, Grandfather and friend to everyone he ever encountered.  A man whose love kept him by his wife's side for 67 years, even as dementia took her away~