I woke up today at 6:30am (which is SO unlike me), went directly into my home office, and started writing an open to a movie about my dad.  I was feeling anxious and inspired.  I witnessed myself typing but was in disbelief about it.  The words were just flowing through my fingers with little conscious thought.  A movie was forming before my very eyes before the sun was even up!

My best friend, Jacquelyn, had planted this seed in my mind recently.  Once again, I found myself on her couch, crumpled and crying, barely able to sit up to talk to her, and she tried to help me out of my dark hole.  She suggested that I stop focusing on the impending bad parts of my dad’s life.  She suggested that I – and my entire family, for that matter – stop wallowing in a state of depressed helplessness and DO something to help ourselves!  I remember just staring at her, blinking, not comprehending at all what she was saying.  She went on to say that, with my talent and abilities, I should be able to turn this into a celebration about my dad – his life, the great man he is, all the accomplishments he has had, the wonderful family he has made…

I remember finally responding meekly with, “I don’t even know what that means.”

She told me to grab a camera, interview him and my mom, get our legacy on tape, relive our family milestones, talk about some happy times, celebrate the good life we’ve all had together!

That got through to me.  I remember sitting up, repeating what she had said to be sure I had heard her right, considering it and agreeing through tears to mull it over.

Then, I found myself sitting straight up in bed this morning at 6:30am, panicked and inspired to start doing something about it RIGHT NOW!  So, there I was, practically having an out-of-body experience watching myself type the opening narration to a movie.  Without thought, it even had a working title: “Honest & Frank”.  Initial Movie Script – Opening Scene

Then, in a split instant, I apparently decided I was done writing, that I had enough initial inspiration down on paper.  I instantly shifted into a panicked pull to get myself to the hospital right away to see my Uncle Jack!  Just a few days since I had seen him last, I was strongly feeling now like I had a very short window of opportunity to spend with him and that life was passing me by!  I raced to get dressed and just as I was nearing completion, the phone rang.  Uncle Jack had just passed away.

Complete meltdown.  OMG, now what was I going to do??  How eerie that I felt PULLED to the hospital right in the moment he was probably taking his last breaths!  Helplessness.  Panic!  Sobbing…

Then, a rational thought suddenly entered my brain and I decided in that instant that I had to immediately visit my parents and roll some video!  I ran to my car but was caught by surprise by the beautiful morning sun and the poignancy of the quiet early autumnal morning Mother Nature had planned.  I ran back inside to grab my still camera and spent a few minutes snapping pictures of my front garden glowing in the mystic autumn sun.  Then, what’s that?  A piece of white Styrofoam or something had blown into the garden…

What is that on the left?

What is that on the left?

I stepped into the garden to move a bush away to inspect the foreign object, and then I saw what it really was!  A cement statue of a Schnauzer, just like our deceased beloved family pet, Scruffy!  Well, how did THAT get there?! 

A cement statue of Scruffy!

A cement statue of Scruffy!

Sobbing, full of emotions, I dropped and broke my camera.  Then I proceeded to dial up some family and friends, asking them through sobs if they had left the gift.  When I asked my mom if it had been her, she said no.  I then told her I was coming over right now with a video camera.

When I arrived, I reiterated through tears the story about finding the Scruffy statue in my garden.  Crying, I said I didn’t know who would’ve done that!  My dad playfully said, “Well, you haven’t asked me.”  I said, “Well, I asked mom and she said it wasn’t you guys.”  To which my mom said, “No, you asked if it was ME and I said no.”  I looked at my dad in disbelief, said, “It was YOU?” and sobbed uncontrollably when he laughed and said yes!  I fell into his arms and told him how much I loved him and how sweet he is to me.

Once composed, I unpacked my camera, set up lights and mic’d my parents.  I sat them down on the couch and rolled camera.  I recorded my first interview for my movie.  Finally, I was DOING SOMETHING…

At last night’s family meeting, Mom mentioned a limited release movie about Alzheimer’s that’s playing at a local theater.  She highly suggested that we all try to see it in the next two weeks before it’s gone. 

In some sudden burst of need and panic, I found myself in that dark, nearly-empty theater this afternoon, watching Memories of Tomorrow all alone.  I was sort of driving by the theater doing errands and felt instantly like I was being pulled into the theater, like I just HAD to see the movie right this instant, I had to KNOW!  It was a very weird experience.  My breathing was erratic.  It felt like my life absolutely depended on it.  My car practically steered itself into the parking lot.

The movie was powerful.  AMAZING.  I had to adjust to subtitles (the movie is Japanese and uses English subtitles) but once I made that transition I was enthralled.  The movie was about a business executive forced into early retirement because of early-onset Alzheimer’s and how he and his family dealt with their life from that moment on.  IT SO RESEMBLED OUR LIFE!  I totally related to the story and it exposed me to some shocking things that can happen.  With raw emotions, I walked out of the theater stunned yet enlightened.  Enlightened to negative consequences of the disease, horrible things that my family might have to endure along the way, things like physical violence.  It’s hard to digest but I strongly believe in forcing myself to be educated on the topic and knowing what to expect.  Or knowing really what MAY happen, as all cases differ.

I instantly called my husband from the parking lot and told him he HAD to come see the movie with me tonight.  He needed to know the truth about this disease as well.  He must have heard the irrational urgency in my voice because he agreed to go with me that very night.

All I remember now is he and I sitting on the bench in the lobby waiting for the previous showing to let out so we could be let into the theater.  Then, the show was letting out and masses were silently walking by us.  Then, two pairs of shoes stopped in front of us.  I looked up.  It was my mother and father – WHITE AS GHOSTS!  They literally were in shock.  We had a very short correspondence and then they said they had to go and they curtly walked away in silence.  It was horrifying.  It was like watching the living dead.

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…

Great.  Not only am I freaking out that my dad’s dying.  Now, I’m fat too.

I just saw pictures from my dad’s retirement party and OMG I am SO embarrassed.  I am SO FAT.  Seeing myself in print just really HIT ME how not-okay I’m doing!  Sh*t.  How is THIS the way I’m coping?  I hear all the time that people LOSE weight when they’re stressed.  Great, but I go this way.  So now I’m REALLY feeling crappy about my life!

It’s the same old question: people lose their parents every day – so why am I not coping better?  Why does my whole world seem like it’s caving in on me?!?  I mean, it REALLY FEELS like I’m losing everything…  I don’t feel safe anywhere.  I cry at work.  I cry at home.  My insomnia is a bad as ever. 

Man, I don’t even sleep properly – of course, I’m not coping well!  I’m just in TOTAL panic ALL the time… unless I have something to preoccupy me, like planning the Memory Walk or Dad’s Retirement Party.  Those have been great distractions and have made me feel like I’m actually DOING something (something useful and meaningful!) vs. just sitting by completely helpless.  Now… how do I perpetuate a state of staying there…?

Dad, me and our lil' buddy Sparky at Dad's Surprise Retirement Party

Dad, me and our lil' buddy Sparky at Dad's Surprise Retirement Party

Saturday was the Memory Walk and something serious happened that day.  My mom’s sister, my Aunt Kathy, was by our side at the Memory Walk and we had a great day.  But when she got home, she discovered that her husband had collapsed while she was out with us. 

Uncle Jack has now been at the hospital for four days and things don’t look good.  He has been in and out of the hospital a few times this summer but this time things appear much more dire.

So we’re in the midst of yet another family crisis… this time staring death straight in the eye.  I can’t help but wonder what this is doing to my dad’s already-existent thoughts on dying.  And what’s going through my mother’s mind and heart as she and Dad continue to visit their beloved brother-in-law in his hospital bed.  They know their day is coming.  They have to be going through an intolerable amount of emotional stress and personal anguish.  We all are in our own way.  This is a very poignant experience.

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!

My dad’s Surprise Retirement Party was today and it was PERFECT!!!  🙂  I have been working long and hard planning all the details: picking the location, designing the theme, orchestrating graphics, choosing decorations, printing posters, ordering food, printing invitations, hiring musicians, buying gifts… 

I had the unique opportunity to produce the party of a lifetime for my beloved father, and it was my absolute pleasure.  I am SO PROUD to call him my father.  I love him SO MUCH.  It was touching to witness the large amount of people who poured into the room… to pay homage to him and to all the good things he’s produced: friends, family, companies, memories to last us all our lifetimes.  He has truly touched MANY lives in a very positive way.  Frank changes lives.  I don’t know how he became such a good man but I feel the need to follow in his footsteps and not waste any of the lessons and skills he’s taught me.

I played the song “Kind and Generous” by Natalie Merchant for my father as our family of five stood in front of the room and honored him.  We gave him a framed collection of all of his career business cards, and we had all of the party guests sign the back.  My brothers and I gave him 3D wall art that looks like steel tubing that spells the word MAGIC in cursive for his Magic Room.  The gift perfectly represents the melding of his past steel tube manufacturing career and his future volunteer work as a magician.  A lifelong magician hobbyist, he now plans to focus in retirement on magic shows for kids.

I can’t describe the amount of joy and satisfaction I received from throwing my dad this party!  My father truly deserved a grandiose send-off.  He deserves everything I can give.  And I can’t ignore the fact that his retirement party had a deeper meaning because it was so succinctly timed with his Alzheimer’s diagnosis just four months ago.  This party was filled with both spoken and undercurrent messages of congratulations, thank you and goodbye from all of us.

The official party poster

The official party poster

Dad's initial reaction upon walking into his surprise party with Mom!

Dad's initial reaction upon walking into his surprise party with Mom!

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.

My mother and I visited Sunrise Assisted Living today.  Under her one condition: that we wouldn’t tell my father.  Agreed.  I mean, it’s not like we’re signing him up for anything; we’re simply doing necessary research in pieces.

The building is a mere half mile drive from my parents’ driveway; its location couldn’t be any more perfect.  The place had a white veranda deck sprinkled with big white Adirondack rocking chairs and lots of wall-length windows.  Inside, white paddle fans stirred the clean air and it truly looked like our home away from home, Hilton Head Island, SC.  If you were to remove the “where” from the formula, it seemed comfortable and homey.

Mom and I met with Sylvia, the Director of Community Relations.  She was a pleasant person, a caring older woman who seems to love her job dearly.  She made us feel comfortable about our discomfort in being there.  She asked about us, our family, our fears, our hopes, our current state of mind.  She said she looked forward to meeting my dad someday – and somehow I believed her. 

She offered us a tour of the first floor.  There are different types of rooms you can choose, from simple to more spacious.  There’s a resident dog and cat – Dad loves dogs.  There is a long list of offered activities, from arts and crafts to visits to the zoo.  We learned that, for an extra fee, we could even personalize his care, like having someone run with him twice a week.  We could almost see him fitting in here – if he absolutely one day had to.

Then we saw the cafeteria.  The hardest part of the visit was the cafeteria.  It was clean, but I wouldn’t call it pleasant – everyone seemed to be eating in silence.  No, I cannot see my ultra-social dad fitting in here.  He’s so much more vibrant than this.

We left with polite goodbyes.  We walked out in silence.  We are not ready for this.  Luckily, he’s not ready for this.

Mom and Dad visited the new Detroit RiverWalk today and shared with us that they had bought a Firek Family brick.  I think their brick is located between the fountain and the carousel.  It’s something they would totally do together: be a part of the community, donate to a cause, leave a legacy. 

I think their gesture was definitely all of these things.  But potentially a bit more about leaving a legacy.  Leaving as many footprints as possible that say, “This world was touched by Frank Firek”, “This world is better because of him”, “He helped create great things”, “Never forget he was here”, “Never let him die.”