April 27, 2020 — To The Moon and Back

I’m hyper aware of the clock ticking.  In ten short hours, it will be the tenth anniversary of my beloved Daddy-O’s passing… 

In ten years, so much has changed.  I have softened the last of my sharp edges, having transformed into the consummate grateful soul.  I have gone from brunette to blonde — the original JoJo! I have just married the love of my life – one of my dad’s final wishes for me.  I have let go of the soul wrenching guilt I carried for years about putting him in a home… I know he knows I did the absolute best I could.  I hold my head high knowing I literally loved him to death and Sparky™ and I sang him all the way to heaven.

Sparky’s still here.  A little more worn for the wear, but always my faithful companion who gives my heart a magical jolt of energy every time I look at him.  

I’ve accepted the fact I will always miss and long for my dad.  I will always greet the moon with “Hello, Daddy-O”, and I will always toast him whenever I pour a glass of wine and no one’s home.  I know he’s with me, watching and guiding, and he undoubtedly played a magical hand in leading me to the absolute love of my life…

Thank you, Daddy-O.  You’ve given me the best gifts – life and love.  I will always love you to the moon and back!

Learn from Sparky™ at FranklySpeakingAlz.com!

April 10, 2012 – Five Year Anniversary of Diagnosis > New Website for Caregivers!

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

August 7, 2011 – EYE OF THE TIGER!!

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

July 4, 2011 – To Those Who Have Served

(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)

June 22, 2011 – AMAZING THINGS ARE HAPPENING

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!!!!!!!!  🙂

 

6/18/11 – Who’s Story Is This?

When I started blogging years ago, I wasn’t sure where my story was heading.  I was clear, though, that it was a story about my dad living with Alzheimer’s.  I gave some backstory and then used the blog to report on my dad’s health status.  It was only over time that I truly realized what I was really up to – I was spilling the truth about what was happening to me and around me during the great Alzheimer’s slide.  Somewhere along the way, the story of my dad having Alzheimer’s morphed into how I was reacting to my dad having Alzheimer’s.  It became the story of Alzheimer’s through my eyes, the eyes of a caregiver.

Blogging in the middle of the night, I’d think, If I can help just ONE person, it will be worth the effort.  If just ONE person visits this site and gets some relief by reading this, the project will be a success.

And then an amazing thing started happening – I started getting comments from people I didn’t know who were actually connecting with me.  I was making a difference!

So I continued blogging and telling the story, digging deeper into my emotions and psyche so that I could truly understand what I was going through so that I could accurately report back.  It became my self-proclaimed duty.  And so I wrote, I cried, I celebrated small victories, and then my dad died.

There was a natural tapering off of my blog entries as I took much-needed time to grieve my loss.  I would check back in by posting a new entry on milestone events like holidays or anniversaries.  But after 6 months I started thinking to myself, Well, now I’m just talking to talk.  No one cares what I’m up to – this story was always about Dad.  Now that he’s gone, there’s no more story.

I felt compelled to post an entry on the 1-year anniversary of my dad’s death.  It seemed full-circle and important to the overall story.  It was comments to this entry that really got my attention: Seeing you training for a triathlon made me realize that I AM going to get through this!…  Knowing that you survived the horrible psych ward experience made me realize that I can survive it too if my worst nightmare happens…”  This was a big acknowledgement and a huge realization for me – this story IS about ME!  🙂

June 3, 2011 – Dr. Jack Kevorkian dies peacefully listening to Bach

I find Dr. Kevorkian’s life interesting and the specific ending to his life compelling.  Intriguing.  Mysterious.

I mean, after his staunch support of assisted suicide over the years, I half expected him to go out with a bang – a final thumbing of the nose to the government system he found so overbearing or a final message to the world regarding his well-known topic.  But peacefully in bed listening to his favorite music??  Hmmm… curious.

I’m aware that I am probably even more drawn to his story now because of my personal experience of watching someone die in bed listening to their favorite music.   (For the record, that still seems to me a pretty good way to go! – minus all the suffering that may come beforehand.)  However, I also personally know Geoffrey Fieger and consulted him while my dad was suffering.  And in my dad’s final week, my mother and I left our bedside vigil in order to attend the by-invitation Detroit premiere of the HBO film, “You Don’t Know Jack” – a very interesting dichotomy.

However, I think Dr. Jack’s personal ending purely demonstrates his overall mission – he wasn’t ever trying to avoid life by choosing death.  Rather, he was trying to help dying people avoid suffering and loss of dignity.  People who knew they were going to slowly die from an incurable disease.  People who were already experiencing increased pain and suffering every day.  THAT’s where Dr. Jack gets me every time.  I connect with that concept.  Always have.  Even before my experience with Alzheimer’s.

But, let’s face it, Dr. Kevorkian himself wasn’t suffering in the end – he was simply dying.  He was dying of natural causes and he chose to continue on that route.  I think that’s cool.  I think it’s important for him to have made that choice for himself.  Not the specific choice of choosing a natural death necessarily – but rather that he probably considered all of his options… and then he powerfully chose his exit strategy.  I think there’s dignity in being able to choose how you die.

(NOTE: I clearly understand that he went to jail for actively administering a lethal dosage to someone which made it “active voluntary euthanasia” vs. his previous acts of “physician-assisted suicide” where he provided the dosage to someone else to administer to themselves. Click these links for an explanation of the difference and the variances of the law.)

May 15, 2011 – Pull yourself together and DO SOMETHING!

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!  😉

March 19, 2011 – FULL MOON RISING

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]