The famous words of my best friend, Jacquelyn Pierce, 4 long years ago.  Sobbing on her couch, reeling from my dad’s Alzheimer’s diagnosis, overly consumed by the disease destroying our family, she literally SCREAMED me into action!

It took a few days, but once her words sank in, I started rolling a (borrowed) camera.  I had no idea what exactly would come of it all, but since I “speak” video, I started shooting what was happening to my family and what was going on inside of me.

Fast forward 4 years and 300+ hours of footage later…

…Ladies and Gentlemen, I proudly yet humbly present to you a movie trailer of my documentary in-the-making which I hope will help change the world of Alzheimer’s…

[CLICK VIDEO FRAME BELOW TO PLAY MOVIE TRAILER]

The other amazing thing is this: I’m blogging from Washington DC!!  I’ve brought my trailer, my vision and my passion to the national Alzheimer’s Association Advocacy Forum where I hope to network, get my completion funding, and take this all to the next level…

Daddy-O would be proud!  😉

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.

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.

Today was the Alzheimer’s Association Greater-Michigan Chapter annual fundraising event, The Chocolate Jubilee.  Apparently, this event is in its 23rd year.  I’ve never heard of it but, then again, I barely knew what “Alzheimer’s” was until 6 months ago.

Mom and Dad learned about The Chocolate Jubilee during the 7-week couples’ support group they attended this fall via the Alzheimer’s Association.  We went as a family to the luncheon, including my Mom’s sister (Aunt Kathy) and her daughters who are my close cousins (Katie and Karrie).  I’m not sure what we all expected from the event, except that we were very interested in hearing from the Keynote Speaker, Dr. Richard Taylor, a retired organizational psychologist whom has been living with an early-onset Alzheimer’s diagnosis for six years now.

Dr. Taylor was remarkable.  He started off saying he got nervous when he couldn’t find his speech notes a little while ago.  🙂  He flew to the event with the help of his wife, his permanent traveling companion now; apparently, he can’t travel alone anymore because he can’t keep track of his itinerary or maneuver confusing airports, etc.  Something we have to look forward to with Dad, I’m sure.

He read some excerpts from his book, Alzheimer’s from the Inside Out.  It’s a collection of diary entries/articles he wrote privately for his own peace of mind, but discovered upon sharing them once that they had value beyond his own two eyes.  I am very anxious and excited to read the book!  This is one piece of research information I haven’t come across yet which I think will be invaluable!  To get inside the mind of someone living with Alzheimer’s, to get a glimpse of what they see, feel how they feel…  I want desperately to understand my dad’s (ever-shifting?) point of view as much as humanly possible so that I connect with him stronger and communicate with him better – on his level.  I AM SO EXCITED THIS BOOK EXISTS!!!  🙂

I only heard of the Alzheimer’s Association Memory Walk a few weeks ago during my ongoing research.  But it sounded like a great opportunity to empower myself, family and friends to actually DO something proactively to fight Alzheimer’s and to celebrate the power we have as a team! 

Feeling my way around the process at the last minute, I emailed loved ones about the cause and the last-minute date of the walk, and I invited them to participate either physically or financially.  

Well, the walk was today and we had so much support that the thought takes my breath away.  AND we had so much fun!!  Amidst the walk, we ended up feeding the giraffes by hand, having butterflies land on our heads and polar bears swimming overhead.  It was an exciting celebratory day of love and life!  And it was nice to be recognized by people from the Alzheimer’s Association Greater Michigan Chapter; it felt like I belonged.

Especially considering the short amount of time I had to prepare and spread the word about this effort, I’ve surprisingly discovered that our team, Firek Power!, raised enough money that we are a Top Five Family Team!  Who-aaa!  Take THAT, Alzheimer’s!

Team Firek Power! at Memory Walk 2007

Team Firek Power! at Memory Walk 2007

Mom is the 1st adventurous soul!

Mom is the 1st adventurous soul!

Dad goes next and loved it!

Dad goes next and laughs!

DSC_0256 CROP

I take my turn feeding the giraffe...

My reaction to feeding the giraffe!

My reaction!

Today Mom shared with me that she ordered Dad a MedicAlert® + Safe Return bracelet.  She said that she’s going to hide it away in a drawer until it’s time – and she thinks that time is still quite a way off.  I think she’s probably right. 

But how do you really know when wandering is going to start?  I mean, does it just start one day?  Or will symptoms get so much worse first that it’ll be obvious when “it’s time”?  There are just SO many questions that run through your head!

I have taken advantage of the Alzheimer’s Association 24/7 Helpline a few times lately. (24/7 Helpline: 1-800-272-3900) The women on the other end have always been so very patient, kind, knowledgeable and available to talk for as long as I need.  I initially called when I was overwhelmed and confused while researching in-home care options for future use.  “Long Term Care Counselors”, “Social Workers”, “Case Managers”… give me a break.  But they were able to explain the system to me, both public and private, and send me in some very helpful directions.  I highly recommend this number whenever you have a question.  I initially thought they were community volunteers but it turns out they are highly trained staff and can help you with everything from emotions and safety-proofing strategies to legal and financial matters.  What a great FREE service!

So, I hope that the day we have to put the bracelet on Dad is waaaay off in the future.  But I am so proud of Mom, relieved that she’s taking advice in stride, comforted that she’s covering the bases to properly prepare us before we have a catastrophe in our life.  Because I’m sure it’s just a matter of time.

I feel like I’ve been researching Alzheimer’s information for two months straight (and I have!) on top of a full-time job.  I now know that there was a very unfortunate detail overlooked the day my dad was diagnosed with Alzheimer’s: the doctor’s office didn’t give my parents a New Patient Information folder which is standard upon diagnosis.  Not knowing this (and that I could’ve just called the office to get it!), I have taken on all sorts of research from scratch: what to expect with Alzheimer’s, where to find support groups, how long they may live, things you need to know, etc.  So, I’ve been immersed in this overwhelming research project – on top of freaking out and grieving myself! – trying to find out what steps we need to take, an expected timeframe of disease progression, where/when support groups take place in our area, etc.  I took it upon myself because I knew my mother couldn’t handle it right now and that this information would be her salvation.  I still get furious all over again when I allow myself to stew on the fact that the doctor’s office messed up a simple detail which has in turn caused me so much grief!!

Along my travels, I have read SO much information about Alzheimer’s.  However, one publication said something so poignantly that no other did: in the final stage of Alzheimer’s, a patient will ultimately forget how to swallow and then how to breathe – and they will die.  This fact sent me sobbing and over the edge!!!  To try to picture that happening to my dad – oh my god!  That is the hardest morsel to digest so far.  It’s now not just the fact that he’s going to die; it’s how he’s going to die!

According to the Alzheimer’s Association and other research, Alzheimer’s Disease can be broken down into 7 Stages.  Based on this information, I (desperately) calculate that my dad probably entered Stage 2 in the year 2000 when he first started noticing changes.  He probably entered Stage 3 in 2002, which was when he was initially tested and told that he may be entering the very beginning stages of dementia.  He was in Stage 4 when he was retested in 2007, which was when he was diagnosed with Early-Onset Alzheimer’s.  Then, based on this 7-Stage sliding scale, I “predict” that my dad may enter Stage 6 by 2012. 

To me, Stage 6 seems like the final stage in which the person will cease to be the person you’ve always known.  They’ll know their name but not their history; they’ll no longer be able to function on their own for daily activities like dressing, bathing, toileting; they’ll begin hallucinating – and wandering.  According to the published information, the person with Alzheimer’s may survive anywhere from 3 to 20 years.  Well, that’s not very helpful!  God, I just wish someone could tell you WHEN shit was going to happen.  But it’s all such evasive information; I think that’s part of the constant torment!

I made my mom choose a support group and I went with her today.  It was at Holy Cross Church in Novi.  She was nervous and uncomfortable on the way there – but even she admitted that this experience would probably be good for her.  I was so proud of her for being strong enough to go.

And then… no one came.  No one.  It was just her and me and the facilitator.  Do you know how f*’d up that is to finally reach out for help – and no one shows???  It was a very grey, all-alone kind of feeling.  I felt HORRIBLE for her.  God, maybe she’ll never reach out again because, after all, what good does it do anyway?  I pray that she doesn’t fall into the-best-person-to-look-out-for-you-is-YOU mentality.  Wow.  We were the only ones there.

The facilitator asked Mom to introduce herself anyway and then asked her if she had any questions she’d like to ask.  I think it was good that she was invited to ask tough questions in a venue where someone was potentially going to know the answers.  And she was pretty much forced to ask the big, bad, scary questions – because, after all, what else were we going to do for an hour, look at one another?  Her and I have been feeling our way around in the dark on this so far, both too injured and uneducated on the topic to help one another effectively.  Finally, we had someone before us who has seen this happen to others.  So Mom asked… When do you consider a home?  …When do you take away the keys?  …How fast will he slide?  …How long will this last???

Mom even admitted aloud that she still hasn’t cried since hearing the diagnosis.  That’s two whole months!  The facilitator told her that this was a safe place and to go ahead.  And we waited.  And then my mom cried.  She sobbed.  For about thirty seconds.  And then she shook it off, apologized, and said she felt silly, as she dabbed her eyes back to composure.

On the way out, Mom wholeheartedly thanked the facilitator for her time and understanding.  But we left not knowing if Mom had gotten any real benefit from that experience or not.  I think she did.  Maybe it was having been given permission to finally cry.  Maybe she realized that, even though no one showed up, her support group was already by her side.  Maybe I was enough.

I have spent a lot of time lately compiling local support group information via the Alzheimer’s Association in an effort to present it to my mom so she won’t have the excuse that she doesn’t know where to go nor the time to research it.  I figure I’ll just give her the list of options and tell her to choose one, and then make her stick to it.

I realize that, no matter how dark the funk may be that I’m in, my mom must be going through something a thousand-times worse.  But she won’t reach out.  She won’t even really cry.  I think that would make it too real.  And she doesn’t want to appear weak.  This way, she can stuff it all into a manageable filing system within her where she’s able to deal with it in her own original way when she’s ready.  She’s definitely not an OMG-woe-is-me kind of person.  She’s strong.  Tough.  Like she always said as a child, Don’t let ‘em see you cry. 

But the danger is that she’s already a tough person and by getting tougher now to survive this, she WILL break down at some point.  YOU HAVE TO TAKE CARE OF THE CAREGIVER.  I’m working on getting this point through to her.  I have to get through to her.  I just can’t push her too much.  And I can’t give her too much space for too long of a time.  I have to time it just right.  She can’t feel smothered.  But I refuse to ever let her feel like she’s alone.