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!  🙂

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!  😉

October 31, 2010 – America, Land That I Love

Cowboys have a classic stereotype of being tough, but I’m here to tell you that they’re really softies inside! 🙂  I think Dad knew the truth – he always wanted to grow up to be a cowboy.  Which makes this tale even better!

[CLICK THUMBNAIL BELOW TO WATCH VIDEO]

October 27, 2010 – CLEAN SLATE OF THE MOON

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]

August 27, 2010 – MY AXIS IS STEADYING

The past 4 months my life has been like a toy top… spinning this way and that… leaning here… spinning off way over there…

I’ve been waiting patiently for it to balance off.

It’s been a full month now that I feel more and more like my old self every day, with the bad days appearing less and less.  I’m very grateful to have gotten over the main hump of the grieving process.

However, today is the 4-month anniversary of Dad passing away, and I find myself quite melancholy.  It started last night on the eve of the impending date and is still present at 2:20p.  I mean, I’m fine – as long as I don’t talk about him or think about him for more than 30-seconds at a time.  That’s what I call a bad day.  Although it’s probably not really bad, it’s more just emotional and takes control of my otherwise composed body and mind.  Tears and longing.

Again, just part of the process.

PLAY VIDEO BELOW:

July 27, 2010 – LEARNING TO FLY

Today is the 3-month anniversary of my dad passing away.  I knew it before it even arrived, as the full moon winked playfully at me the past 2 nights – just like it beckons me every month at this time.  I believe it’s my dad talking to me, the moon in general.  It’s surprising how often I’ve noticed the bright moon out during the day these past few months.  Especially at poignant times… when I’m already thinking of my dad… feeling his void… I look up… and… there’s the moon!  It feels like my dad is watching me and is still sharing in the moment.

The moon… and sunsets!  FULL-BLOWN red and orange BLAZING-sky sunsets!  They always make me stop and notice and appreciate the beauty of this life.  Sometimes they make me cry.  I vividly remember telling my dad in his last few weeks on earth to just let go, relax, fly away to heaven and become an extraordinary sunset for all to see.  So now every time I see a sunset, I feel like he’s letting me know he’s still around, as extraordinary as always.

Sparky’s still my faithful companion.  I’m very aware of the fact that, without my dad, neither he nor I would exist.  Dad gave us both life and an invisible bond you can only see with magic.  Dad always was an amazing magician capable of producing remarkable things!

Sparky’s been my co-pilot on many a traveling adventure these past few months: in 10 weeks I’ve been to Nevada, Texas, Georgia, Ohio, Oklahoma, and camping deep in Michigan’s Upper Peninsula.  And only ONE of those trips was actually planned ahead of time!  Oh, and I spontaneously bought a new sports coupe!!  I’m not sure if this travel bug and restlessness is a result of suddenly being an unburdened caregiver who’s enjoying newfound freedom or if I’ve been running and changing scenery so rapidly in order to help me deal with my loss and fill the void.  Either way, I’ve had many adventures along the way, one thrill after another in between the tears, and it’s reminded me that there is still such much for me to do and see in this life!  I’m living in the moment and know it’s something Daddy-O helped teach me.

After recently returning home from my last trip, I feel a little more grounded and am thinking I may stick around for a little while this time.  My spirits are typically high, my productivity is slowly returning, and my zest for life is strong.  I just have to get my focus back.  Absent-mindedness is a common symptom during the grieving process – and I’ve been flakey beyond belief!  These past few months, I double- and triple-book events, I forget entire conversations, one evening upon announcing I was leaving my best friend’s house, I was incredulously reminded that the whole purpose for our gathering was the dinner we hadn’t yet eaten!  Sometimes you just have to laugh at yourself, give yourself permission to be where you are, and believe that your friends and family love you and get it.