I am tickled pink to know that this website continues to be viewed around the world daily!  Through viewers’ posts and emails, I have learned what an immense relief it is to other caregivers to know that they’re not alone and what to expect with this complicated disease.

To offer better support and insight to caregivers throughout their ongoing journey, today we are proudly revealing our new website: www.FranklySpeakingAlz.com!

I hope that you will share and pass on this new site to others who are struggling with Alzheimer’s.  A new PROBLEM/SOLUTION format imparts the priceless lessons I have learned as a caregiver.  Plus, the new WEBISODE SERIES format starts at the beginning of my family’s story, revealing in much more detail the roller coaster ride that overran our lives, including footage of all my family members to demonstrate the complex dynamics of a family in turmoil.

Please know that, because there is such useful information here, I will continue to keep this Original Blog LIVE, but I will no longer be posting to it.  You can always find my Original Blog at www.FranklySpeakingAlz.WordPress.com or simply by clicking the bright red ORIGINAL BLOG button on my new site!

Good luck to each of you on your journey and please stay in touch by subscribing to my new Webisode Series at www.FranklySpeakingAlz.com!

Peace and love.

~ Joleen

Today was my 1st triathlon and a VERY BIG day for me!  Caregiver survives, Triathlete emerges…  [WATCH VIDEO]

(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)

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!!!!!!!!  🙂

 

Sometimes it’s the small things that become a BIG deal.  Like the MINI-TRIATHLON I’m training for!  (You ask, Have you ever done anything even remotely like this before in your LIFE??  Heck, no!)

My goal the past year has been BALANCE.  Achieving it and keeping it.  After my long few years of soul-searching, I now wholeheartedly believe that this concept of BALANCE is key to having peace in my life.

I’m VERY proud of the strides I’ve made!  However, I must admit, the anticipation of Dad’s impending one-year anniversary has my emotions churning just a bit faster these days.  After months of happiness and ultimate faith in the process of life, I feel myself having a memorable moment: I’m feeling my way through the one year barrier…

[CLICK 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’ve plunged back into the working world as of 3 days ago and find myself moving along at a fairly decent clip, all considered.

Prior to that, I was like a wounded animal limping through the haze.  Those first few weeks after losing Daddy-O were foggy, painful and just plain surreal.  It’s weird when your world instantly loses one of its constant beacons; you lose your way and have to numbly find your way back to reality – albeit a new, revised reality.  And then you have to get used to that new place.

Nine days after the funeral, during this hazy process, my roommate and I escaped to Vegas for a quick getaway.  Quite frankly, looking forward to that trip actually helped me get through the funeral proceedings in the first place.  Then, once in Vegas, I distinctly felt myself disconnect from the regular drama of my life, and I was thankful for the tangible, much welcomed and much deserved break.  I figured I would get back to mourning a few days later once I touched back down in Detroit.

Surprisingly, though, back in Detroit, I discovered that I had healed a lot between Vegas and home.  Maybe it was the onslaught of neon lights and casino noise or the cool drinks and cloudless skies or simply the fact that I was nowhere near home and so no one knew I was mourning.  Whatever it was, I was able to act normal and literally be carefree for the first time in years!  It was an amazing sensation.

When I returned home to Detroit I found myself shocked – and then saddened – when I realized I had actually somehow recovered beyond my expectations in that one short weekend.  I suppose that after 3 years of pre-mourning the loss of my dad, I was somehow, somewhere deep inside, more prepared to move on than I thought.

That’s not to say that I don’t miss him LIKE CRAZY and sometimes still cry when I think about him!  The difference I’m speaking of is that I can talk about him sometimes without crying – which, I believe, is quite an amazing feet.

When I consider that my family and I could have been dealing with my father having this horrible disease for another DECADE – like millions of families do! – it absolutely blows my mind.  I have NO idea how people survive years and decades of this heart-wrenching disease.  I suppose that’s exactly why 40-percent of Alzheimer’s caregivers die before their failing loved ones.  I mean, seriously, WHO can take all that??

What I have now is scattered feelings: I feel blessed to have been Frank’s daughter, I feel sad because I miss him, and I feel lucky to have been released from this madness.

I find myself listening to oldies music at every possible opportunity – in the shower, in the car, while working.  The music feels like my last tangible connection to him.  Like, if I just smile big enough… and sing loud enough… and think happy thoughts enough, maybe Daddy-O will shine down on me, smile, and dance back…

(NOTE: Frankly Speaking: Alzheimer’s subscribers didn’t receive an email alert upon my last blog entry a few days ago for some reason.  If interested in reading that entry, scroll down one entry on my website to read my dad’s amazing eulogy as delivered by my cousin, Karrie [McLean] Martin.)