POST 8 - Fall 2009; Mom Outsmarts the Highway Patrol :)

Christmas 2008 - Heidi, Dad, Mom, Tina, Betsy
By now, mom has had FTD for at least 2 years, officially diagnosed 1 year ago.  She can no longer drive and her speech is down to words or memorized phrases.  “Yes, No…Really and truly “ or “Oh dear…” are her responses to nearly everything.  We’ve had a few incontinent incidences, but overall, just as long as we planned accordingly, everything went smoothly.  She is walking a bit slower, but the inevitable physical decline, fortunately, has not set in yet.  Her swallowing and ability to eat were top notch (almost too top notch….pretty soon we would have to child lock the cabinets).  A passerby would not know anything was wrong.  Her ailments were still primarily focused in communication and language.  And with that came decreased attention span and understanding of simple commutative tasks such as talking on the phone, writing and reading.

The past 6 months, I’ve been on a civilian deployment in Iraq.  While away I began to notice with each phone call home it was harder and harder to talk to mom.  Sometimes she would forget she was on the phone and just set down the receiver and walk away—leaving it off the hook for hours.  When I could get on the internet on base, Skype worked a lot better because she could physically see me..  Her face would light up with a smile when she saw me, I would ask her what my name was and usually she got it right.  I would say a silent prayer every time – knowing one day I would ask her and she would not know anymore or not be able to express it.  Conversations would not last very long. I would ramble about my day (which was typically the same as the day before), and when I could see I was losing her attention, I would try to sing a song with Mom – music is stored in a different part of the brain, so even though she could not string a sentence together, she could single simple songs from beginning to end.  So if that meant singing Jingle Bells in July, by gosh, we sang Jingle Bells in July!

Now that I have returned, I need to move back into my apartment in Baltimore.  

Between 1998 and 2007 Mom has moved 5 kids in and out of dorms, apartments and houses at least  20 times.  She is the only person I have ever met that enjoys helping others move in and out.  I personally have already moved 7 times in the past 5 years, and Mom has helped me every….. single….time.

I did not know it at the time, but this would be the last time Mom would be physically able to help me move.  And boy was it a memorable one.

On a sunny Saturday, we loaded up my dad’s truck and took the 4 hour drive from Pittsburgh to Baltimore. 

Dad had warned me of Mom’s new tick but he didn’t have to – it was apparent within 5 minutes.  Every police car we passed, she pointed her index finger to the road and softly said, “Cop.”  And when she wasn’t finding a hidden cop, she was looking at the speedometer and advising you on your speed – “too fast.”
“Mom, I’m going the speed limit.”
“Too fast”
I didn’t mind.  At least I would not get pulled over with her in the car. 


About 3 hours in, the windows were down, country music on the radio and we were enjoying the ride.  By now, I was also checking the speedometer religiously (thanks, Mom).  But at this moment, I was enjoying the song on the radio, and we were going downhill on an empty highway.

And then came the sirens.

I look over at Mom and smile reassuringly.  She smiles back but is clearly worried.  She understands we just got pulled over.

We were on I-70 and so for safety reasons, the police officer comes to the passenger window instead of the driver’s.  I roll down Mom’s window and hand over my license. 

“Registration, please, Ma’am.”

“Yes Sir, looking for it now – I’m in my dad’s truck and I’m not sure where he keeps it. 

Mom looks at the officer, nods vigorously, “Yeah.”

I’m scrambling to find the registration.  I check the multiple compartments of the center console.  Then all possibilities on my side – the door, the visor, under the seat (anyone that knows my dad knows that he does not keep this in the normal locations.  Knowing him, he has some off the wall reasoning as to why the registration should be sealed in a water proof cover and taped to the back of the mud flap or undercarriage of the car).

Meanwhile, the officer continues to ask me questions, which I try to listen to and answer as I continue my search.
“Do you know what the speed limit is Ma’am?”
“Do you know how fast you were going?”
“Did you say this was not your car?”
“Whose car is it?”

Mom excitedly nods and replies to all the officer’s questions:  “Yeah, yeah, yeah….”

She has also joined me in the search for the registration.

“Oh dear…” she says and opens the glove box.

Officer: “Where are you headed, ma’am?”

Mom: “Oh dear…” and looks at me, not really sure what to do or how to react to this situation.

Officer: “Ma’am, I know you want to take care of your daughter, but I need her to answer the questions.”

Me: “She has dementia, sir, she doesn’t know what you’re saying.”

“Oh….” He looks forlornly at Mom.

But Mom isn’t phased!  Mom: “Yeah!! Yeah” she nods with absolute sincerity at the officer.  

And….with that the mood is lifted; it takes everything in me to not laugh at this point.

Mom goes back to the glove box and pulls everything out.

She hands the police officer something.
I look over.
It’s a map of West Virginia.

“Just go with it” I say to the officer. 

He politely takes each item Mom hands to him. And within moments he has at least five maps in his hands. (Jeeez, Dad, how many maps of PA can you use at once?!?!!  I’m not sure who I should be more worried about at this moment. Mom or Dad???)

As I continue what has turned into a full blown “Quest” for the Holy Registration, I answer a few of the officer’s questions. Well, really I just started rambling to fill the air as I look.
It’s my Dad’s truck.  I have no idea where he puts things. Things are never where you expect them to be.  I never drive this truck.  My mom and I are headed to Baltimore where she’s helping me move back in.  I just got back from my deployment.” I indicate to the truck bed, full of furniture and boxes. 

“My mom has been watching my speed the whole time, it just got away from me on that downhill.”
Mom chimes in: “Yeah, yeah”  Still nodding, still excited!

Officer: “Where were you deployed?”

“Iraq – Victory Base, with the Army.” I say in anticipation of his next question.
(Ok, yes, I am pulling the “Iraq card” – can’t hurt, right??  So maybe I left out the part that it was the Corps of Engineers and it was a civilian deployment rather than active duty….  But gosh darn it – I wore the body army, I left the wire. 95% of my work was with Iraqi’s rather than Americans. It counts!!).
Officer:  “My nephew just got back from Afghanistan – I appreciate your services.”
“Thank you, Sir” (It’s working….)
Mom: “Really and truly”
Side note – the officer is still holding the maps. J
“Here it is!!!”
What felt like an eternity later, I hand over the truck registration.  It was in an plain white envelope at the very bottom of the center console.  If I remember correctly, it was labeled “tickets” or something that had absolutely nothing to do with a car or registration.  Thanks, Kerm.
I hand it over.  He hands the maps back to my mom. “I’ll be right back.”
She looks down at her hands, bewildered, then over at me.  She starts laughing.  I have noticed more and more that when she is nervous, her reaction is laughing.  I start laughing too.  What else can you do?
“I guess he didn’t need those.” I shrug and take the maps from my mom and put them back in the console.
“No…” (My tone was implying a “no” answer; so I am not entirely sure if she understood what I had said or if she was just providing an appropriate response based on my tone).
The officer reappears and hands me a yellow slip.
“I’m going to let you off with a warning.  Please be careful and slow down.”  He’s looking at Mom while saying this, not me. 
 “Thank you so much, sir. And yes, I will.”
“Take care now,” He looks like he wants to hug Mom.   I wonder for a moment if he’s shocked by her age (she’s 57 but honestly, looks 50; she has aged well) or does he know someone with Dementia and he’s thinking of that person right now.  Either way, Officer and I share a silent “I get it,“ moment when he finally pealed his eyes away to look at me before he walked away.
“And thank you for serving our country”
And with that last statement……..solemn moment gone as quick as it came!
I, again, found myself trying with all my might to not smile or laugh.
“Thank you, Sir. We’ll be careful.”
I roll up the window.  And let him pull away first.

“AHHHHHHHHHH!!!!! Hahahahah!!!!”  I turn to Mom and wrap my arms her!
“You don’t realize it, Mom, but you got us out of the ticket! You did good. You did real good.”
She’s absolutely beaming. She may not understand every detail.  But she knows we just got pulled over and she knows it ended well and she knows I’m proud of her and she did something right.
“But…..let’s not tell Dad.  Let’s just keep this between us.”
I am nodding intensely and she mimics my nodding.
“Yeah…no. no.”
And I knew—I knew at that moment she actually understood that last phrase.  That was mom saying “Yes, let’s keep it between us. No, let’s not tell Dad.”
Every once in a while a glimpse of Mom shines through.  Today was one of those days.
I turn the truck back on and we continue on our way to Baltimore, where, for one final time – Mom will help me move.

Nanny, Heidi, Tina, Megan, Mom  - Heidi's HS graduation 2005.  Nanny and Mom both were diagnosed with FTD 3 years later
Mom with her brother, John

The Numbers Are In....

 (Heidi and Betsy at the start- yes I’m wearing a trash bag.  It was chilly!)

At 7am, May 5th 2013, Heidi and I joined 25,000 other runners at the start line to the Pittsburgh Marathon.  Everyone was running for a reason.  Some were there to PR or to qualify for a different race; Others just because they love Pittsburgh and what better way to show their support to their city?  We chatted at the start with a husband and wife that run the relay with some friends every year.  To our left were a handful of police officers running for their squadron.  Another husband and wife ran the marathon together every year, but since his wife was eight months pregnant, he ran the full and she “only” ran the half.  I repeat – at 8 months pregnant, she ran 13.1 miles.  39 Boston marathoners that were not able to finish the race because of the bombings were flown down, and with their Boston numbers and shirts, were able to finish the race here in Pittsburgh. 

Many were running for an official charity - Animal Rescue League, American Cancer Society, Children’s Hospital, Susan G Koman, Cystic Fibrosis, in support our veterans and troops…Aid for Haiti…the list goes on.  And then there were some were running for unofficial causes – in memory of [mom], [dad], [grandfather]…  for a girl named, Jodie, this was a tribute run in memory and of her twin sister – Jaime, who lost her battle to cancer earlier this year.

Mike Bruno, father to a 7yr old with Autism and born blind, ran 26.2 miles blindfolded in order “to gain a better understanding of what Cassie deal with on a daily basis.

And of course, we can’t forget the crazies-- And by crazy, I mean the people that run marathons because they find them enjoyable.   ;)

Regardless the reason, one thing was the same for everyone this Sunday – passion.  
Heidi, mile 16ish?
Heidi and I ran with Mom and Nanny on our hearts, and thoughts of the survivors --Grandpop and Dad, my cousin Shelli—who now has to mow the lawn (and rocks at it) after losing her husband last month, and my friend Melanie—who just took her first steps with her new (and sexy) prostatic – after her fight with skin cancer. 
Betsy - "just keep swimming...just keep swimming..."

If Sunday were a book or a movie, the passion and emotion of the event would have made the run feel easy.  We would have finished in a full sprint, classical music blaring, bursting into tears at the finish. 

Heidi and I were on a runner’s high for the first 8-11 miles; feeding off the excitement of the crowd and cheers.  Then came the hill at about mile 12. All hope for classical music and a sprinting finish were lost.
I hit “the wall” at 19 miles.  But I ran through it; never stopping.  As I ran through the finish, a volunteer handed me the metal and congratulated me.  My response was “that was awful,” in a half joking /half serious voice. The gentleman laughed and said I made his day. 

Heidi and I eventually reunited, but not before there was some confusion on the Port a Pots “meet up” we had planned out (in case we didn’t finish together)…and a long hobble back to our car.  (Heidi and I had parked in the Strip District – thinking it was a location far enough away we could get out easy after the race.  It was far enough away, alright.  Took us almost 40 minutes to hobble back to it!!) 

So all in all – not exactly the fairytale finish! 

All joking aside, we could not ask for better results. The Bluefield Project had emailed us the night before to update the family on the total donations –so Heidi and I were able to go into the run knowing the goal had been met. (Thank you).  

Even as I write this, my eyes well with gratitude.  We've said this before, and we'll say it again and again – thanks to all of you and through each and every one of you, Mom has once again, been able to do what she did best – give herself to others.  The Pittsburgh Marathon is over, but we will continue writing and sharing Mom's story, our first run with FTD (and run-ins with the police) in order to educate and continue to raise funds (cocktails and Chinese auction this summer??)

And so, without further ado, here are the numbers:

Ø  10           – the number of known types of dementia:
·         Alzheimer’s disease
·         Vascular dementia
·         Dementia with Lewy bodies (DLB)
·         Mixed dementia
·         Parkinson’s disease
·         Frontotemporal dementia (FTD)
·         Creutzfeldt-Jakob disease
·         Normal pressure hydrocephalus
·         Huntington’s Disease
·         Wernicke-Korsakoff Syndrome (alcohol related)

  • 3.8 Million           - the estimated number of people currently with some form of dementia
  •  9.1 Million          - the projected number by 2040
  •  $109 BILLION  - amount spent in direct health care costs in 2010 (for heart disease - $102B; $77B for cancer)
  •  2040                     - The year dementia care cost and number of people with dementia is projected to double (**
  • 56                          - The age Mom - Mary Flanagan Hall was when she was diagnosed with FTD
  • 80                          - The age “Nanny” – Marge Flanagan was when she was diagnosed with FTD
  • 61                          - The age FTD took Mom away

Now some numbers on the other side of the coin.

  • FIVE      - the number of children Mary raised into successful young adults 
    • (2 engineers, 2 teachers and a graphic arts/IT specialist)
  • FOUR    - (soon to be 5!) is the no. of grandchildren she would have to spoil this Mother’s Day 
    • (Emma, Lily, Josh, Henry)
  • 40           - the number of people that have donated in honor of Mom and Nanny as of 5/6/2012
  •  2,966     - the number of times someone has opened the blog and hopefully now know a little more about the “other” dementias and about Mom (just between March 17th and May 6th 2013)
  • 11           - the number of COUNTRIES that the blog has been viewed from.
  • 4 hrs 8 minutes -  Heidi’s time in the Pittsburgh Marathon – “Race for Mom”
  • 4 hrs 19 minutes - My (Betsy) time in the Pittsburgh Marathon “Race for Mom”
  •  $5000                    - Our first goal for the Pittsburgh Marathon
  •  $5,640           - The amount raise when by the time Heidi and I stepped onto the start line

Thank you all for your support…

Mom holding Henry and Josh, May 2012

The whole "Gang" Dec 2012 -(L-R, B-F) Megan holding Josh, Tina holding Lily, Adam holding Emma, Elly holding Henry, Dad, Mom, Heidi, Brandon, Grandpop

Mom, Emmagene, Grandpop, Dec 2012