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.
“Here.”
I look over.
It’s a map of West Virginia.
“And…here??”
Pennsylvania.

“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 (http://www.nytimes.com/2013/04/04/health/dementia-care-costs-are-soaring-study-finds.html?_r=0)**
  • 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


A beautiful Eulogy written by Pat Blahovec - friend and colleague of Mary


The below letter was written by a good friend and colleague of Mary's.  Pat Blahovec (Mama B to me) sent this to the church and it was read by the priest at my mom's funeral.  We had no idea she had sent this and so we sat, eyes welling with tears, both stunned and grateful for her spot on recollection of my mom.  While Father Ken was reading it aloud, I whispered to my sister "I think she covered everything we have in the Eulogy, and maybe better, ha"  Christina smiled and nodded.   As daughters, it's easy for us to say how great our mom was--it's almost expected.  But to hear a close friend and colleague to my mom echo the same sentiments, touched everyone's hearts; she described perfectly Mary Hall's character  -- love through actions.   

Thank you Mama B for your beautiful homage to Mom and being her friend over the years.  


Mary Hall


Mary was the model mom for the neighborhood.  She did it all-and always willingly, humbly and with a smile.  She raised 5 children, attended all their school and sporting events.  Volunteered countless hours at the school, PTA and CCD functions.

Mary would arrive at a PTA meeting with one in a stroller, one on her hip, and 3 in tow.  She might have been a couple of minutes late (wonder why) but she was always there.  And always the first to volunteer for anything.  She was a good worker and obviously a good organizer.   She was part of a group of parents that would recycle newspapers and plastic as a fundraiser. There was a huge dumpster in the school parking lot, and there would be Mary -in the dumpster placing recycled items before school started.

Mary could do anything.  She could pull off a meal for 7 in a minute with one hand while helping with a school project with the other. She could fix everything.  Having lots of mouths to feed she sometimes had a car that was not always functioning well.  It was not unusual for her to pull off the road and add water to the radiator or work on the starter switch.  But the best was when she was in the Harrison Park Elementary School parking lot.  She had her van.  When she slid open the side door, it just kept going and fell off the track, resting in the parking lot.  Not too much for Mary, she fixed that too.  She said, “I’ll have to tell Dan about that.”  It didn’t even faze her!

When her children got a little older, she became the nurse at Harrison Park Elementary School.  Now she was the mother to 600--nothing  for Mary.  She cared for each one as if they were her own.  The kids loved Mary and sometimes she had to set limits on the “frequent flyers” who would rather be with Mary in the Health Room than in class.  Mary put her all into the job.  Her supervisor never even checked in on her work-no need, it was always done and then some.

Mary’s Catholic faith was very important to her.  She made sure her children were brought up in the Church.  She was active in their formation process at church and at home.  When the Hall family came to church-they needed a whole pew!  They sat in front and never left early!


I have missed Mary for several years.  She was my sounding board professionally and personally.  She touched countless lives and her service was Christ like.  Always for others, never for Mary.  She was a faithful servant, well done Mary.


I am so proud of how her family stepped up to help her during her illness.  Caring for her at home was not an easy task.  I truly don’t know how they did it, until it occurred to me that there was a little bit of Mary in each one of them.  That’s how they did it.



Pat Blahovec




Post 7 - I want "J"


(Introduction)

My mom and grandma are both affected with this gene (more on my Nanny in a later post) and by some ironic cruelty, they began their descent the same time.   They were alone together.  Loved ones afflicted by FTD can see, listen, and feel the free world but cannot express their thoughts and feelings freely.  Family members and friends can visit, but communication will continue to decrease over time.  Summer and Fall of 2008 Mom and Nanny could still go out on their own and by the same time the next year, someone needed to be by their side to help with the simple task of walking.  Driving had long been out of the question.   If you are the afflicted one, family eventually starts to act as though you are not around, talking about things they normally would not talk about in front of you.

Family and friends still visit but they begin to just sit or not pay direct attention to you. If there is communication, it is a one-sided conversation because within a few years you will lose all ability to speak and communicate.  You lose concept of time; there is no difference between a day and month anymore.  Your days begin to repeat themselves; sitting, sleeping, and watching TV.  If you’re lucky, you can do puzzles or cook until that goes too.  Soon your family completes all tasks for you like: when you go to the restroom, eat, sleep, drink, what you wear, and when bath.  Your family misses you more and more everyday even though you might be five feet away.  When the ability to speak is completely gone, your husband or daughter  may hang on to things like their out of date cell phone in fear of losing that last voicemail of you on it that they listen to daily just to hear your voice.
 
Over the course of that first year – Dec 2007 to Dec 2008 Mom (and Nanny ) went from  a woman who had problems with a few words but still an all-star nurse and parent to 5 to a person who had to leave the job she loved, forgot how to spell words like “love” and “cereal” (even when she was looking at the word), lost her driver’s license, and unable to cook for herself without supervision.  Two years later, at the end of 2009, she will require someone there daily  to show her how to bath, wash her hair, and prepare food for her.  Child gates will be put up to block off stairs, locks will be changed to keep her from escaping (literally) and wandering the neighborhood.  Toaster ovens and microwaves unplugged, oven knobs removed to prevent fires as she randomly walks the house and turns them on.  Then the Depends  and incontinence will come…lack of depth perception and the fear of walking on dark mats, escalators, icy steps… she will cling to my dad like she never has before; a child in a crowded place, uncertain of her surroundings.  Swallowing will become difficult and the family will learn all about “ThickIt” and Ensure, pureeing food, handicapping the bathroom…the list goes on.

Over the next few posts, we will tell you a few stories – and some quite funny—of “instances” or snap shots of a day in the life with my mom over the years.  We’ve had some good laughs and cries and now that we have given you the background in more variations than you probably cared to hear, we want to share with you some samples of the day to day and take you through the years. 
Thanks again for listening….

(Begin Post 7 :  Fall 2008 – “I want ‘J’  )


“I want J”
Diagnosis or no diagnosis, one thing is always true – tomorrow will come whether you want it to or not.

Once mom was officially diagnosed that August, it took away any hope of her returning to work in the Fall.  As a nurse, she was now a liability if anything happened.  My mom was given a few months of medical leave and then would have to retire. 
I recall trying to tell her to see this as an early retirement – an opportunity to learn those hobbies she always meant to try, to focus on her for once instead of others.  But my mom knew the real reason she wasn’t working.

I’ll never forget coming home from work in late August (I was still living at home for another month or two before I had to go back to Baltimore) and finding her sitting on the corner of the couch, head propped up with the back of her left hand as she leaned onto the arm rest, feet curled up beside her, and just looking down at the carpet, her eyes blank.

“What’s wrong Mom?”
She shrugged her right shoulder and shook her head.  It was obvious she was doing everything she could to hold back the tears.
“Mom, what’s wrong?”  I ask again.  “What did you do today?”
“Nothing, I cant. [pause as she tries to find the words] I nothing…[pause] to do.”
And the tears came for both of us as I sat down next to her….

Our family had to regroup. 

First, even though there was nothing a medical doctor could do in terms of treatment (there was absolutely nothing to even slow the disease down) at the present moment, mom will eventually progress and we needed a doctor to monitor her and help our family cope with the changes.  Eventually, mom’s physical health will begin to deteriorate as well, so we needed a doctor.  Dr. “diagnosis Mary through a 6 sentence letter” had moved out of state to another hospital (See POST 5: The Beginning—Part  III of III- Confirmation to learn all about that fiasco). 

Second, and as that particular afternoon in August clearly demonstrated, Mom was still lucid and aware of what was happening– her mental health was the number one priority.  As my uncle said in a conversation to me, “she needs to still get up every morning and have a purpose in life.  Her needs will change every day and everyone needs to be fluid and ready to adjust.  Anything that can keep her feeling independent without putting her or others in harm’s way should be considered.”

Third, routine.  As my mom progressed, routine will become more and more important and so the sooner we got her into one, the better it will be in the long run.

Adam (my brother) and I ended up joining the same online support group for FTD/PPA caregivers/family.  Joining this group was the best decision I made.  I remember my first email to the group – introducing myself and giving a brief background on my mom and her current state.  I asked if they had any advice on what my mom could do to stay busy. Her children were all now young adults and out of the house.  She could no longer work.  What can she do all day long?  My inbox was instantly flooded with emails full of advice and comfort.

Legal and financial advice: “Get a will, living will, power of attorney, medical power of attorney, etc. in order ASAP.  Do not wait and your mom may still be able to present her wishes before the disease takes that ability away from her.”

Advice on day to day activities:  “Puzzles, putting photo albums together, gardening, house chores as long as she is physically able, sewing, walking/running- any kind of physical activity, volunteer work in the community or at the church, visits from family and friends…speech therapy (more on this later)…” the list went on and I was so grateful. 

I even received advice for the caretakers:  “Take care of yourself.  The caregiving to PPA/dementia is a marathon.”

I will forever be grateful for what this group prepared me for.

…

And so, on that particular afternoon, and after a very long hug, I got pen and paper and my mom and I put together a list.  It was not easy.  By now she was already struggling to understand what I was saying and having even more troubles formulating a response.
 
“Let’s list all the things you like to do and then every night we’ll go over that list and thats what you’ll work on the next day.”

“OK”

To be honest, I knew what I wanted to put on the list, but I wanted to make sure she understood what we were doing, and more importantly, I wanted her to feel part of this, that what was decided was her decision.  My uncle’s words echoed in my mind again Let her be as independent as she is able to be.

“Ok, so we have laundry, dishes, mowing the lawn, putting photo albums together, going to the grocery store…what else?” I ask
“Um…”  Mom’s voice was tentative, each word chosen carefully.
“Maybe…sewing?  Or…Qu—quilting?”
“That’s a great idea.  You can finish the tree skirt you had started for Adam and then make one for Tina as a wedding present.”
“Yeah.”
She even smiled. 

And so for the next week, things seemed to improve.  Dad and I would still let her make dinner and just discreetly supervise – careful to make her feel that she was cable of doing it on her own.  Dad would wake Mom up before he went to work and make sure she got herself breakfast and reminded her of the list on the kitchen counter we had put together the night before.  I started to come home to mom in the dining room instead of on the couch, working on the sewing machine and in good spirits.  It may sound trivial, but a scene like this made my throat tighten with emotion. 

Then one afternoon, I walk in and she is clearly stuck on a thought.  She tries to tell me about her day but nothing is coming out.

Finally she says, “I need J.”  You need what??
“Hm,” I say.  “What is J?”
“J.  I need J”  I can see this going to be a productive conversation.
“Maybe spell it for me.”  I hand her paper and a pen.

Mom picks up the pen.  The determination in her eyes is fierce.  She absolutely knows what she wants, the word just isn’t coming. I’m also relieved to see that throughout this exercise she is genuinely in good spirits.  I note this and make sure to keep the tone positive and to not get frustrated.  I’ve noticed this is surprisingly easier than I expected it to be.  And for Dad too – we have commented on how our fuse is infinite when it comes to Mom.  We know it’s not her that is getting caught up but the disease. 

I looked down and watch mom spell out what she wants.  She holds it up.

J

“J!” She exclaims.

Oh boy.

I slap my hands together and take a breath, “OK! Let’s play charades!  Now, what is a different word to describe what you need?”

She thinks for a moment.  

“Go. Store.  J”
“Ok so you need to get something at the store that starts with a J.”
“Yes.”
“Grocery store? Do we need Jelly?”

She shakes her head.
 “What the heck else starts with a J??”  I laugh. 
“No, no.  J.” 

With her index finger, she repeatedly makes a “J” in the air and looks at me with absolute conviction.  It’s as if she’s saying “Duh! J. Why are you not getting it?”

“J, right. Pretty sure we got that much established,” I say with a smile.  “Can you show me something in the house that will help?  Show me what you need.”

She taps her index finger repeatedly onto the paper with the J.  

"No, show me something else, something in the house-- an object."

A light bulb goes off.  Mom disappears down the hall and comes back holding a small square.  She sets it down in front of me, grinning from ear to ear and says, “J!!!!” as she pats the square.

I look down and now a light bulb goes off in my head.  It’s a square piece of fabric.

“Ohhhhhhhh….you need to go to Joann Fabrics and get more fabric for the quilts!  You’re out of cloth! You need to go to “J”—to Joann Fabrics!”

“Yes! Yes!”  

You would think I had just solved the million dollar puzzle, we were that excited.

"Ok, let’s get shoes on you, and we’ll go.”

And off to Joann Fabrics we went. 


Christina's Bridal Shower 2008 - Christina with Tree skirt Mom made her

~~
If you noticed in that little tale, mom said “yes” when I asked if what needed was at the grocery store.  That’s the tricky part of PPA.  Yes doesn’t always mean yes, and no doesn’t always mean no.  So when asking someone a question, you can’t close in on  it quite yet.  You need to stay on your heels and be ready to change direction at any moment.  At this point, anyone seeing mom on the street would not think anything wrong.  And though her ability to speak for more than a few sentences was lost, if asked the right question, she could still answer simple questions, and say it with conviction.  But if you asked the wrong question, or phrased it in a way she did not understand, or did not use enough visuals, her answer would still be with conviction, just maybe not the answer you wanted—even if you had asked her if pigs fly, her answer could be with complete confidence whether she said “yes” or “no.”
Christina and Mom with the tree skirt

But today was a success.  Even PPA/FTD can’t take that away.  We went to Joann Fabrics and got more than enough material for mom to finish Adam and Christina’s tree skirts.  Mom gave Christina the tree skirt as a shower gift the following month.

A few months later, on Christmas day, mom gave everyone their “special” gift last, as she always did.  This year, Dad had to help her pick most of them out.  When she handed me mine, it was a tree skirt.  
Mom, Roth (Christina's husband), and Dad (Dan)

Mom and I (Betsy) Christmas 2008

She had made one for me too and kept it a surprise.

That was Mom for you.  Always giving, always thinking of others, even when she couldn’t get anything out except “J.”




Marathon Training Update! 4/22/2013


Two weeks to go and over $3000 donated --Over halfway there ($5k goal)!! Wahoo!!!!

Our training is also "over the hump" and on its way “down.”  With that said, today was a 12 mile run. 
Dear marathoner runners reading this:
 For those of us that are not marathon runners, 12 miles is still a long freakin run.

And for me, who has no sense of direction, it’s even longer.  1 mile longer, to be exact. 
This is the route I had mapped out to run.  Notice it is circular (ish – you need to use your imagination).




This…is the route I ended up running.
Not so circular, even with your imagination at work.
 It was pretty much an out and back (except for within the park because I got a second time during my return).  It’s hard to see in this image but miles 2, 3, 4, and 7 and 8, 9, 10 and most of 11 are all in Frick Park.  For those of you familiar with this park know at least one fact – it’s hilly.
You know the old saying“I walked 5 miles uphill get to school and 8 miles back –also up hill; in the snow.”  Ok, so no snow today (thankfully!!), but I kid you not, I have no idea how I did not end on a mountain top somewhere.  The run into frick was a half mile downhill, the next 2.5 were all uphill.  And somehow, I swear I’m not lying, I’m pretty confident I ran about 1/4 downhill and 3.5 uphill.    
I may not be a marathon runner, but I’ll have calves of steel by the time this is all over! (and um….only eight toenails.  TMI?  Too much info?  Yeah well, I’ve had some shoe issues.   J

Switching gears – I had hoped to publish a post called “I want J” tonight.  It’s a story about my mom in Fall of 2008 – while she was still physically fine but her communication skills and ability to understand/respond were deteriorating.  I hope it gives you a better sense of the day to day in the early stages and maybe even makes you laugh (maybe, no promises).

But after running 12  scratch that -13 miles – uphill both ways – I need another day to finalize “I want J.”  
But promise to have it up in the next 24 hours.

Also coming up:
  •    A beautifully written letter/eulogy by Pat Blahovec (friend and colleague of my mom).
  •     How mom got me out of speeding ticket
  •     A note from Elly – my sister-in-law whom lived with my mom and was her personal caregiver.
  •     Mom’s physical decline
  •     Time to talk science – Nanny, Mom and the genetics of our family’s FTD
  •      “Dreams about mom”
  •     Some more information on what the Bluefield Project and what your donations will contribute to.
  •      And a few more (that’s not a title – that’s just saying there will be a few more posts).
Even though the marathon is two weeks away, as long as you all are clicking on this page, we will be on the other side - telling mom’s story to the end.  The blog has been opened over 2,400 times and in ten countries.  My family and I cannot thank you all enough for sticking around, reading the posts, donating (and if you’ve been really thinking about donating but haven’t – that enticing button on the right will help ya out in a matter of 45 seconds).

Seriously though, thank you for all of your support and for sharing this with others as well.  My mom spent her life always giving; I’m not sure if she knew how to be the recipient of generosity, but I know she would have tears in her eyes and a swelling heart, just as mine is thanks to all of you.

A quick message from Heidi:




(Voice - Heidi) 

I just ran 7 miles.  20 miler this past weekend, which I wasn't so sure about since I just ran the USA Rock n Roll marathon a month ago.  I am feeling better than expected; strong. Running and training for the marathons have helped me a lot to control my emotions about my mom and how she fought those last days of her own marathon with FTD.  Every time I want to give up I just think of how hard she fought to breathe and stay strong.  It's amazing how running has been a therapy for me.  It makes me feel alive again, when otherwise I feel lost knowing that I don't have my mom anymore.  I sometimes, while running, pretend that she is now living inside of me and I use her strength to finish my last couple miles of a long run. 
I know come May 5th, Betsy and I will have her with us.  

Post 6 - A Glimpse into the Past - Cousins


-15 April 2013
Before getting into today’s post, we were going to update you all on the marathon training progress (another 20 miler for both Heidi and I this weekend).  In light of what happened in Boston today, marathon training seems rather trivial.  So instead, we want to direct our thoughts to the city of Boston and those impacted by today’s tragedy.  We hope for the safety and speedy recovery for anyone harmed in the attacks, our deepest condolences to the family, friends, and witnesses to those who were not so lucky, and finally,  thank you to all of those who were there to help.

Post 6  - A Glimpse into the Past - Cousins
No matter if you are 6, 16, 36, or 66 – your mom is still “Mom.”  I will always find it fascinating to hear about my mom’s life before motherhood.  That she had a life before motherhood.  Mary Margaret was a sister to John Flanagan, a daughter to Jack and Marge, a friend and cousin to dozens.  She skipped rope, collected baseball cards, helped with chores, fought with her brother, looked after her brother and so much more.  She went to prom and nursing school and travelled to California with her best friend.  Mom was a person, just like you and me.
Today’s post – as the title clearly suggests—takes us back to before FTD; before mom was a Mom.  
~Thanks Marie~

Cousins
            Hello, my name is Marie Flanagan Majarov and I live in Winchester, VA with my husband Milan, nearby our daughter, Vicki and grandson, Jake.  I am Mary Flanagan Hall’s oldest cousin -- actually, among us Flanagan cousins I am everyone’s oldest cousin!  To have Mary (always Mary Margaret to me) taken from us by a devastating illness, FTD, has been one of the saddest experiences in my life.
             I have seen the pain in her family through the years as I know and love Mary’s mother, my dear Aunt Margaret, and I knew well her grandmother and Uncle Steve – all also tragically afflicted with this terrible disease.  At the time of Nan Marcin’s and Steve’s illness its full devastating hereditary component was far from being understood - or even imagined.      
           
            My being the oldest kid in the family has had some wonderful perks.  One, when I was but a few years old, was getting to visit many places with Aunt Margaret and Uncle Jack (Mary’s mom and dad) and spend wonderful times with Mary Margaret’s grandmother, uncles, and Aunt Ann swinging on the best back porch swing ever!  And oh the treats -- kiffles and poppy seed rolls and many other unbelievably yummy things made by Mary’s Nan Marcin.

            I am 4 years older than Mary Margaret.  She was such a beautiful little baby, and her arrival so exciting.  As a little girl Mary Margaret had the most gorgeous blond hair I had ever seen. Truth be told, I was jealous of that golden hair. It wasn’t long before we were playing, fast friends – and sitting together on that Marcin swing.  
            
           When Mary was 3, we, with my brother Frank, got to stay at the Emmetsburg (PA) Inn for the wedding of our Uncle Jim and Aunt Mary Lou. The Inn was huge, amazing, and elegant; we were all sure we were in a castle and played accordingly.
            
           There were hours and hours that we played house in the unfinished attic in Mary Margaret’s Hatboro home with its treasure trove of toys and spaces for setting up great play fantasies.  I would often spend the night with her.  Soon Mary’s baby brother, John, joined us. I can remember standing with Mary Margaret next to the cradle, in which at one time all of us Flanagan cousins, and our parents’ generation before us also slept, looking on at John dressed in his fancy christening suit.   
Uncle John (brother) and Mary Margaret (Mom)
          
           Our families were close. There were much anticipated family picnics, dinners, and vacations in a charming older Victorian home on NJ’s Long Beach Island where more cousins:  Molly, Reene, Hugh & Colleen, Uncle Jim’s children, joined us.  Early on we would swim in our small back yard pools, and as we grew we would spend a week each summer with our Wilson, Glah, and Moyer cousins at the Wilson’s home and lake.  A special treat was an overnight visit and walking to the circus with Nan Flanagan when Mary moved to Delran, NJ.  
           
           Even washing dishes at holiday gatherings was fun because we were doing it together – and many pictures recorded Mary Margaret and I helping.  The one here shows our grandmother Flanagan, me a junior in HS, our Aunt Kay, and Mary Margaret in 8th grade.  Fun memories!
L-R: Nan Flanagan, cousin Marie, Aunt Kay, and Mary Margaret (Mom) - May 1964, in Nan's kitchen, Seneca Street in Fountain Hill, Bethlehem. 

            As time passed there was nursing school, college, marriage, and children.  Megan & Adam, (Christina, you were on the way) and my Vicki, also enjoyed a little back yard pool at the Hall home with Mary Margaret and I chattering and enjoying our children much as our mothers did years before.  Unbeknownst to us all, Primary Progressive Aphasia and Frontotemporal Dementia were not far off… more about our later years and the painful good-byes during the course of Mary’s illness in a future post. 
           
           For me, Mary Margaret’s children and these happy memories are the treasures in which she will always live and be in my heart.  Please help get the word out about this life-shattering, degenerative brain disease so people will understand and support the research to find answers that can assure Mary’s children and grandchildren that they will have long full lives ahead of them, free from FTD.