I will be forever grateful to Karen Drew, Reporter, with the local Detroit NBC affiliate, WDIV-Channel 4.  She aired an AMAZING story tonight about my personal journey with Alzheimer’s and how I’m turning it into a movie bound for submission into Sundance Film Festival!

It’s incredible for me to see this vision that was born 4 years ago actually coming to life.  Amazing things happen when you speak your dreams.  Dreams DO come true!

Daddy-O would be SO PROUD!!!!!!!!  🙂

 

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I think this is the first month-anniversary of Dad passing during which I haven’t cried.  And considering it’s 11:36pm, I think odds are good I’ll make it through the whole day with dry eyes!  😉

Two months ago, I think I would’ve felt guilty about that.  But I don’t feel guilty.  Nor do I feel cold inside. I just feel like I’m adjusting to the new world around me which no longer physically holds my beloved Daddy-O.

This month, I’m definitely experiencing more smiles and warm feelings vs. emptiness and fear.  Dad’s departure song, Barbara Ann by The Beach Boys, has come on at unexpected moments during this past week of the full moon, and every time I hear it I sing and dance and invite him to join in.  All this week, the moon sends me to bed and follows me to work and I find comfort in that.  I feel like Dad is playing a game with me and I love it!  If he can’t move Sparky anymore, leave it to him to take to the sky!  🙂

[CLICK ON THUMBNAIL BELOW TO WATCH VIDEO]

I have been busy trying to change gears with Frankly Speaking: Alzheimer’s in order to develop the business more intensely now that I’m not caregiving and needing to tape my entire life.  I’m taking a business class, finishing up a six-month screenplay writing class, dubbing and transcribing all of my footage (over 200 hours!)… all in an effort to help get my movie to the big screen as soon as possible and help other caregivers around the world desperately in need of support and guidance.

Here are my thoughts while on my way home from business class tonight:

I am proud of all that we accomplished at the Alzheimer’s Association Race For Your Memories event.  We had the support of a LOT of friends and family, as always.  I know that the teamwork is something that my Daddy-O would REALLY be proud of!  🙂

Here is my brother, Frank Jr.’s, email recapping the event:

Greetings all!

Well the Alzheimer’s Association’s “Race for Your Memories” was Sunday and, if my Dad was still around, he would be calling me a “cake”!  “Cake” is a term of endearment in our family that translates into “you’re a wimp”.  One of the unstated rules in our family of doing a run is that you actually “run” the whole race.  Well, I was not able to do that Sunday.  (Here come all the excusesJ)  It was hot, the course was hilly and I trained on flat ground, and I started off too fast by running 9 minute miles for the first 2 miles.  I had made it about 4.5 miles when we encountered a big uphill climb.  My legs already felt like tree stumps as I started the hill.  And by the time I was half way up my legs had nothing left, my head was throbbing and I felt like I might pass out.  So as much as I did not want to do it, I ended up walking for a short distance to get up the hill and regain some energy.  I then ran for about another mile when we came to the biggest, steepest hill on the course (who in their right mind would put this at the 5.5 mile mark of a 6.2 mile race?).  I told the person I was running with I couldn’t do it and he said “bull sh*t, you’re going to do it”.  So I kept going and I did make it up the hill.  However, I then needed another walk to regain myself before we ran the last quarter mile to the finish line.

I had a number of goals for the race:

  1. To complete the race – Some might say I completed it, but in my mind I did not as walking didn’t count between my Dad and me.
  2. To finish in under an hour, or 9:41 per mile – I actually finished in 1:02:36, or 10:06 per mile.
  3. Team Firek finish as #1 in donations received – We finished as the #1 team with $2,375 in donations.  The #2 team had $1,483.
  4. My mom and I finish #1 and #2 in donations raised per individual – At the time of the race start my mom was #1 and I was #3.
  5. To have 30 members on Team Firek – We ended up with at least 33.  Some people registered the morning of the event and I may have missed one or two here.

Thank you all for your support of the Alzheimer’s Association and of Team Firek!

NOTE:  I know my Dad would be proud of what we did here.  But I still owe him a complete 10K and I will be doing that in the next month or so.  I just need to find another 10K run in the area and keep up my training.  And I WILL run the entire race and break 1 hour this time!

FYI:  Origins of the word “Cake”.  The exact details are a little fuzzy, but it goes something like this.  My dad was out for a run once when I was a kid and as he was running a large dog came barking and running towards him from the porch of a house.  My dad picked up a rock in case he needed it if the dog attacked.  But the owner called off the dog before he got to my dad and then started yelling at my dad for picking up the rock and he called my dad a cake.  My dad said “You think I’m a cake.  Let’s see you run 3 miles and then we’ll see who’s a cake!”  And after that, “cake” became part of our family vocabulary.

Frank Firek, Jr.

(NOTE from Joleen: Today, on the 2-week anniversary of my dad’s funeral and the 3-week anniversary of his death, it seems fitting to remind us all what Frank Firek meant to us and some of the great lessons he taught along the way.  Take it away, Karrie…)

As you all know, Uncle Frank was magic… so I must be honest and tell you that late last night, I found myself saying a little prayer… asking him for just one more magic trick… because it will be nothing short of magic if I can describe to you this amazing man in seven minutes or less without crying to the point of speechlessness… so please, F.A., just one more trick!

My uncle, My Godfather, my father’s best friend: Frank Firek, my F.A., was all of these… to Aunt Fran, he was Prince Charming.  To Frank Jr., Todd and Joleen, he was Dad.  To Frankie and Ashton, he was Grandpa.  To many, he was boss, to others he was Coach, or Mentor.  To some, he was “Mr. Magic.”  To countless people, he was friend.  And to all of us, he was a teacher.

During the days of our long goodbye, I pondered what I would miss most.  Would it be his smile?  His laugh?  The excitement in his voice when he greeted me with a resounding, “FA – I said it first!”  (FA, short for Fat Albert, being a nick name that we had shared for as long as I can remember.)  I found myself questioning why he had been such an important part of my life, and suddenly the answer was clear.  What I will miss most about my FA, will be the lessons that he was forever teaching me.  Because honestly, I didn’t learn everything I needed to know in kindergarten.  Everything I ever needed to know about being a good human being, I learned from my Uncle Frank.

From FA I learned that heroes do exist, that fairy tales sometimes come true, and that the Beatles weren’t lying when they said “all you need is love.”  Uncle Frank taught me that persistence pays off, that a promise is something worth keeping, and that magic IS present in every fleeting moment of this rare and precious life we’ve been given.  By watching him interact with others, I learned that kindness is the key to happiness, that diversity is the spice of life, and that living a life which abounds with childlike wonder will bring joy to everyone you meet.  But perhaps the most important lesson he taught all of us is that there is no greater power on this Earth than love.

Aunt Fran and Uncle Frank proved to the world that soul mates do exist and that love is ALL you need.  From a small house in Redford with carpet samples covering the floor… to a life of worldwide travel and a penthouse on the Hilton Head beach… their epic love was the driving force and the crazy glue that made this fairy tale possible.  Regardless of the challenges that life laid before them, their fortress of love was unwavering.  I grew up watching them love each other.  Watching them play backgammon together at the kitchen table and dance across the kitchen floor, watching them hold hands at every possible chance, watching Uncle Frank massaging her feet while they watched TV… and knowing that when I grew up, I wanted a love like theirs.

I also spent a fair bit of time as a child wishing that they were my parents instead of my Godparents.  I didn’t realize it then, but now I know that Uncle Frank was busy teaching me how to someday be a parent.  It was obvious that Uncle Frank was the coolest Dad in the world ~ Frank, Todd and Joleen had mopeds, parties, a pinball machine, a pool table, and a secret closet to talk on the phone in that was FILLED with sugar cereal and sweet treats!  But there was more to their dad than that…  He was the original “Hands-on-Dad!”  He was their Cub Scout leader, their coach, their cheerleader, and their mentor.  When most dads would say, “Go outside and play!”  Uncle Frank would say, “Let’s go outside to play together!”  Whether it was a game of tag that involved the whole neighborhood scaling fences, shimmying down poles and jumping off decks, or a squirt gun fight that spanned an entire condo complex soaking innocent bystanders, Uncle Frank was always the one leading the fun!  When other dads said, “Go to bed!”  Uncle Frank would say, “Stay out here until I call you” and would then proceed to set up elaborate “haunted hallway” and would scare the kids silly as they ran down the hall toward their beds.  And while other dads would be angry when their children made small mistakes, like running over the hard top to a prized ’59 Corvette, or knocking the mirror off a brand new moped… Uncle Frank would put on his angriest face, for a moment or two, before his endless smile would melt the angry face away and he would crack a joke instead of doling out a punishment.  That is not to say that he didn’t know how to strike fear in small children… because he did!  He had a mask collection to rival a Halloween store and I never knew when he was going to come around a corner wearing one of them!
Uncle Frank taught me to face my fears head on when I was still small.  Looking back, I don’t think it was a coincidence that he always needed ME to get him something from the basement.  I would stand at the top of those stairs, toes curling over the edge, trying to gather my courage for the decent into The Viking Lounge.  I’d count to three, sprint down the stairs with my little fingers bumping against the wallpaper, turn the corner, run like hell, grab the desired object, and get back to the stairs as fast as my seven-year-old legs could carry me!  I never fully outgrew the distinct feeling that one of those hairy Vikings was going to step off that wall and gobble me up whole!  As an adult, he taught me how a hero faces fear… because on a spring day, three years ago, it was FA who stood on that scary precipice, facing a most terrifying diagnosis and, in true Frank Firek style, he was determined to run, to dance, to love, to laugh, and to teach his way through it.

Determination and persistence were ever present qualities in FA’s life… You don’t successfully start a business from scratch, knowing NOTHING about the said business, without a fair amount of determination!  You don’t finish your second marathon, 20 years after your first and three minutes faster, without persistence.  And you certainly don’t decide to conquer the problems of the Detroit public school system single handedly through a one-on-one reading program without an amazing amount of both!  And so, upon his diagnosis, he set out to write the book that he had long talked about writing and through his determination and persistence, he kept his word, and made yet another dream come true.

Uncle Frank always kept his word… even to my mother’s chagrin.  When my sister, Katie, and I were young, he promised us that EVERY time he came to our house he would play with us… and so, on nights when Aunt Fran and Uncle Frank would end up back at our house, regardless of the time, he would come running into our bedroom, throw on the lights and tickle us until we were sufficiently wide awake and laughing hysterically.  He also once promised to buy me a bird for my birthday…  All I am going to say is that it took a year for the story to unfold, and by the end of it, two important lessons had been learned: 1.) Uncle Frank always keeps his promises; and 2.) The Master of Pranks will not be out done… even if it means renting an elephant!  There was certainly something magical about seeing that elephant saunter down Northville’s Main St.

Everything about Uncle Frank was magical ~ he didn’t just do magic tricks, he WAS magic!  It was as if those graceful fingers were the most powerful magic wands in the world.  He delighted friends, family and strangers with his magic shows.  He knew how to transform mundane moments into magical memories.  He taught me that there is magic in traditions; be it a pen set won in Vegas, a Christmas Eve story recited by heart, or a small red and white bear with a desire to go places!  If you knew Frank Firek, you knew that magic does, in fact, exist.  And so, I can’t say that I was surprised by his final disappearing act.  It seems only fitting that the magician would wait until the stage was perfectly set, and the music, which coursed through his veins, was just right.  With his final dance danced and his final beer drank, he had just one more lesson to remind us of before he rocked and rolled up to heaven.  In his daughter’s arms, he reminded us one last time, that LOVE is all you need.

Many years ago, Uncle Frank was asked to speak at a funeral, and during his speech he said that memory is the ability to smell a rose in December.  Thank you, FA, for all of the memories… for I shall have a bouquet of roses to enjoy when December roll around.

FUNERAL ARRANGEMENTS:  Viewing: Monday, May 3, 1-8 PM.  Funeral service with Military Honors: Tuesday, May 4, 10 AM.  Location: The Heeney-Sundquist Funeral Home, downtown Farmington (www.heeney-sundquist.com).

Suggested memorial tributes to Alzheimer’s Association – Greater Michigan Chapter (www.alz.org/gmc) or for use in completing the movie, Frankly Speaking: Alzheimer’s™ – The Documentary (www.FranklySpeakingAlz.com).

(Real-time Entry)

Somehow the air seems so still these past few days.  A fog shrouds me at times, but inspiration from my dad forces me to keep moving and take action.

(Real time entry)

It’s 11am Saturday morning and Dad has been “sleeping” for 38 hours now.  He fell asleep at 9pm Thursday and we haven’t had an interaction with him since.

…But WHAT a last day we had!  J  Daddy-O just couldn’t stop dancing and giving all of his visitors one last amazing day!  How he was STILL going and able to stand (sometimes for 40 minutes at a time!!) with no food or drink for 4 days… what an amazing spirit he is!

Sparky is by his side.

(Real-time Entry)

I never even got to blog about the birthday trip I had 2 weeks ago!  To give us both a long-needed break, Mom whisked me and her off for my gift, a “Surprise 40th Birthday Trip”– destination unknown!  She told me what to pack but it wasn’t until arriving in Miami that I discovered we were going on a 4-night cruise to Key West and Cozumel!  She also surprised me on my actual birthday with snorkeling/swimming with the stingrays!!  I thought that was a VERY COOL WAY to ring in the new decade!  Her and I look so relaxed and happy in our vacation pictures – it’s been a long time since either of us have been at that level of relaxation and pure enjoyment.

When Mom and I returned home tanned and rested, we drove right from the airport to see Dad at Courtyard Manner… and the Alzheimer’s ride continued FULL FORCE!  Just that morning around 5am… he had smashed out his bedroom window… with his head!  He had cuts and scrapes all over his head and arms and was quite the site.  We even noticed that he’d lost MORE weight just in the short 5 days we had been gone.

Fast forward to last Wednesday (6 days ago)… his head wounds still haven’t healed and totally disappeared.  The hospice nurse referred to this phenomenon as “skin breakdown”.  She said that since he is barely eating or drinking anymore, his body is using all of its available energy to focus on keeping his organs alive.  Apparently, skin reparation is the step his body is now ignoring out of natural necessity.  He also regularly has new scratches on his limbs and back from scratching himself so we are trying to keep his nails short for his own safety.

When I hug him, I usually announce, “I have a hug for you…”, and then while embrace he shrugs his shoulders to hug me back and oftentimes mumbles, “MmmmmmmMmmmmmm…”  🙂  You get head nods for answers sometimes, and sometimes he even pleasantly surprises you with opening his eyes or kissing you on the lips!  A little bit a mumbling/talking a little bit of the time, but not much for speech anymore.

This past Saturday he refused all food and drink for the first time, then Sunday he rallied (see videos below), and Monday (yesterday) he was back to no food or drink.

But how special that Frank Jr. and I have that wonderful Sunday night memory!!  Dad really came out to play!  Way to rally, Daddy-O!

…Today, just 2 days later, Dad is bed-bound, having a hard time swallowing his natural saliva.  He experienced some seizures today while sleeping.  Vallium has now been ordered (he started Morphine Thursday) along with a directive that NOTHING be given by mouth anymore for his own good.  We are bedside full of love…

(Real-time Entry)

Life goes on for the family outside of Dad’s 4-walls, but we always get back to him as soon as humanly possible and we are spending a lot of time there this past week.

In an effort to squeeze in meaningful visits and let him know he’s not alone, my immediate family has begun taking shifts around the clock at Dad’s home. I personally believe that Dad knows how much he is surrounded by love, even if he is sometimes physically alone, but there is no harm in someone being there all the time to speak lovingly to him and hold his hand or scratch his back.

Some loving cousins and uncles have volunteered to take shifts in order to help out, which makes me realize that I should mention to everyone out there that if you’d like to visit Dad, please just let me know.  This would allow one of us to take a break.

Of course, you never know how long this process will take and so we’re just doing what we can – from the bottom of our hearts.  I do truly believe my dad is still steering his own ship and he’ll let US know when it’s time.  🙂

P.S. Another blog entry with more video to come tonight…

I am too emotional and strapped for time to edit this video down to be any shorter than it currently is, let alone even add one dissolve to it.

An intervention of fate?… I dropped my camera and my lens cracked this week – but I videotaped the events as they unfolded nonetheless, cracked lens and all!