(FRANK H. FIREK, AIRMAN 1st CLASS, U.S. AIR FORCE)

Independence Day brings reflection and pride.  I think of my dad who proudly served his county (Airman 1st Class, The U.S. Air Force) and believed that it was simply part of his duty to preserve this privilege and comfort called the USA to which so many of us have become accustomed.  He loved freedom, stepping up, helping a good cause, and giving.  He believed that his military experience helped shape him into a good man, a gentleman, someone who appreciated a good challenge and learned to persevere despite all obstacles.

I fondly remember learning to make the bed as a child, fastidiously trying to create perfect “hospital corners”.  My dad wasn’t militant; he simply passed on his knowledge in a fun, creative way that made you want to learn.  Every fold was a connection to him – who he was in that moment, who he had been before I was born, who he hoped everyone would step up to be.  I yearned to be that person in his eyes.  And he was undoubtedly my hero.

I am so full of pride and thankfulness this weekend for my dad and ALL others who have served.  Their selfless and countless acts of kindness.  Their bravery while walking unknown territory.  Their perseverance to overcome what was thrown at them.  And their goal to be standing alive at the end of the battle.

I can’t help this year but compare the military experience to the Alzheimer’s experience.  They seem to me to have a lot of similarities.  Of course, there are those who have Alzheimer’s and bravely walk to the edge.  But I’m thinking more along the line of Those Who Serve Those With Alzheimer’s.  These people are true heroes in today’s society.  They don’t personally have the disease so they don’t have to take this journey – but yet somehow they choose to accompany someone else on their harrowing journey.  I believe THIS is the compassion and love and dedication that was represented in those “hospital corners”.

I have a few friends who’ve recently lost their beloved parents to Alzheimer’s.  Barry is one of them; he lost his mother ten weeks ago after being her primary caregiver.  Barry is wonderful, kind, funny and giving.  But Barry is struggling right now with some intense emotions, inexplicable thoughts and sporadic behavior.  And he’s apologizing for it.

I told Barry in a recent email:

It’s ALL part of the decompression process.  You may find yourself doing crazy things lately, and that’s just you trying to come to terms with what the *BLEEP* you just witnessed and survived… and now you’re taking stock of the rubble of your life, trying to make some sense out of it all, and needing to pick a direction to start moving in to restart your life.  Trust me, I get it.  You’ll be okay, eventually.

As I was typing these words to him, it struck me for the first time how much Caregivers really are like Veterans of War — and how important our role is to help each other re-assimilate when it’s all over.  I mean, we’ve really witnessed some harrowing things.  Through the process we’ve questioned ourselves and God, and we have had to discover what honor and duty truly mean.  And when the battle is over for each of us and there is nothing left to defend, we find ourselves standing alone in the middle of the field, blinking in disbelief, and wiping the proverbial ash off.

But the truth is, we aren’t standing alone.  We are among millions of other Caregivers who get it.  There are millions of people wanting to hug us, tell us Job well done! and welcome us back. Veterans are always the knowledgeable ones who have lived through the experience and can now help lead the way.

As I shared with my friend Barry:

You are in a complex state of grieving.  Anything goes.  Give yourself permission to be feeling whatever you’re feeling.  You need to decompress.  Just try not to displace anger.  Alzheimer’s SUCKS.  The medical system SUCKS.  We didn’t have enough support.  Curse the system!  …And then let’s use our newly-acquired knowledge to help others and change the world for the better…

Make it a point to hug a soldier, salute a flag, and to ask your fellow neighbor what you can do to help them during their battle with Alzheimer’s.  Let’s unite and become stronger as one – because there is strength in numbers and in believing you will survive.  Let’s change the world one “hospital corner” at a time.

(FRANK H. FIREK, AIRMAN 1st CLASS, U.S. AIR FORCE)

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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.

 

 

**Click to WATCH this LOCAL NEWS STORY!!**

 

 

If you’ve been following my blog, you know I have been posting my story retroactively and linearly, starting with my dad’s initial diagnosis on April 10, 2007.  Staring today, I am shifting the story’s angle to present day.  Going forward, I will designate a REAL-TIME, CURRENT DAY BLOG by italicizing the entry.  This will enable me to update you in real-time about what’s going on in my life (like a true blog), while still allowing me to fill you in intermittently on the past background of the story.

Here goes…

(REAL-TIME ENTRY)

Yesterday morning I received the most harrowing phone call from my mother.  From her voice, I could tell that either someone had died or she was finally having the long-awaited breakdown.

MY PARENTS HAVE BEEN ROBBED AND ALMOST ALL OF OUR FAMILY JEWELRY HEIRLOOMS ARE GONE!!!  My father’s wedding ring, his engraved pocket watch, his $20-gold-coin-and-diamond money clip – all items left to us kids in their Will – GONE!!  Countless rings and bracelets, necklaces and earrings of my mother – GONE!!  Fifty years worth of gifts signifying the love between them have been grotesquely ripped from our lives!

The most harrowing part of the story is that the police investigation is focusing on the 4 in-home care workers who have been helping us take care of my dad over the past number of months; people who have been entrusted with a security entry code and endless hours alone in our home.  One of these people had enough time to locate a hidden safe and learn to crack the code!  One of these seemingly-caring people entered our home under the guise of helping us care for my ailing father and they STOLE from us the only remaining precious items we’re about to have left of him!!

How COULD someone?!!!!  My poor mother had a breakdown yesterday.  I’ve never seen her so distressed nor cry so hard.  She said she can’t do this anymore.  She’s at the end of her rope.  She’s desperately trying to hold on, but it’s fraying.

Here she is being the most courageous and loving person, caring for my dad 24/7 (all while her heart slowly breaks into a million pieces!), finally trusting someone enough to let them in to help share the burden of care giving, finally getting some much-needed sleep, and they do THIS to her?!!!?

After a long, emotional and exhausting day, the bottom line from yesterday is that a crime report has been filed and the in-home care companies have been fired.  Which brings us back to square one: No support system is in place to help us with Dad!

Together Mom and I made the heartbreaking and anguishing decision yesterday afternoon to finally place Dad in a nursing home.  I called Sunrise Assisted Living and committed to a room for Dad beginning January 1st.  When I hung up the phone, I thought I was going to throw up in my lap.  I’m still crying as I type this. This means we have just 3 weeks and 1 day left of our life with Dad at home. 

The fact that someone took advantage of my parents while they are suffering and in such need and distress is severely disheartening, to say the least.  It makes you sick to your stomach.  It almost makes you disappointed in humanity. 

But then my brother and I sent out an emailed cry for help and support last night to our family and family friends – and the outpouring today has been enormous!  It’s these gestures that snap you back and remind you of how much goodness there is in the world.  Thank God we have THESE people surrounding us in our life, helping us to our (proverbial and emotional) finish line.  Because, as Mom and I have learned, we cannot do this alone.

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!!!  🙂

In my mind, my brother Todd and I have been riding out the storm together and with Mom and Dad since diagnosis.  But my brother Frank Jr. has appeared a bit more checked-out.  There has been palpable tension as everyone has been dealing with the diagnosis at their own pace and style. 

Tonight we had a family meeting.  Mom and Dad called it.  They wanted us all to watch the movie, The Notebook, together and then talk.  The Notebook is about an older couple dealing with the Alzheimer’s experience.  We watched the movie.  And then Frank broke down.  Finally.

Now, all seemingly on the same page, Mom and Dad shared with us their thoughts and concerns about the ride ahead.  Undoubtedly, Dad is extremely depressed.  He gave us examples of how lethargic he’s become: going for a run and stopping shortly in mid-stride and slowly walking home; sleeping while Mom’s at work because he has no job to go to anymore and nothing meaningful to pass the time.  He personally shared with us thoughts he has been having about possibly ending his life early.  He says he realizes that it is an option.  He says there is nothing positive about the long path ahead, this long goodbye.  He says he doesn’t want to put us all through that.  He admits that eventually, for him, at some point it won’t matter anymore – he won’t be aware of what’s going on – but we will all be suffering watching him deteriorate.  He wants to shield us from that pain (my god, always the considerate gentleman!).  And he wants to be remembered as a man of dignity, not as a fading aimless man.

I get where he’s coming from.  I think we all do.  But we also all made it very clear that under NO circumstance should he consider this serious act simply to appease US.  It is HIS life and he has to ride it out as HE sees fit.  We will respect his wishes, no matter what they are.  But HE has to make the decision (and, quite frankly, silently on his own if he’s truly to shield us from harm’s way).  I also pointed out that we need to get Dad on antidepressants immediately and that both he and Mom need to begin some sort of support counseling.  They mentioned that they went to a support group together just yesterday and will be going back.

But the plain simple thought of him choosing either path just makes me sob.  It was an excruciating conversation. 

And now I’m concerned about WHEN this (might) happen.  Again, like the open-endedness of an Alzheimer’s diagnosis, this possible alternate ending has left me waiting, worrying and on edge…

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.