December 29, 2009 – SUMMER CAMP

(REAL-TIME ENTRY)

The past two days Mom and I have been packing up Dad’s things for the nursing home.  What a surreal event.  She wrote his name in permanent marker on everything from his toothbrush to his loafers.  We ironed name labels into all of his clothing.  She even packed pajamas – something he’s never worn.

I took the advice of my best friend, Jac: Just pretend you’re packing him up for summer camp!  As silly as it sounds, I kept saying that to myself and aloud to Mom during the process.  It helped to somewhat alleviate the burning realization that we’re packing him up for a place from which he’ll never return.  It helped me feel more like we were packing him up for a fun adventure he was going off to have versus the tough reality that he’s leaving us and things will never be the same.  As silly as that all sounds, it actually worked a little.  We got through the ordeal in a very militant checklist sort of way, pushing back the guilt-laden thoughts that have a way of bubbling to the surface when you least want them to.

As New Years Day quickly approaches, signaling the day everything will cease to be the same in our family, I know I have to start focusing on me and the next chapters of my life.  Maybe spirits above interceded to insure that I had no professional projects to report to this past quarter so that I could focus on matters at home and work on my documentary.  Regardless, it’s time to return to the Land of Me whether I want to or not.  I have to get my work priorities in order, work on my dating life, and propel myself in directions I know I need to go.

I hope to travel some of these roads with my mom by my side and keep a watchful eye and caring hand on her as well.  Whether she wants it or not, the next chapter of her life is about to begin as well.  I need to be sure that she is not totally alone as she traverses roads she’s never experienced without my dad before.  Her life partner – HER BEST FRIEND! – is taking a fork in the road after travelling by her side for fifty years and this is going to be the roughest, rockiest patch she’s ever known.

December 28, 2009 – THE BOOK IS HERE! THE BOOK IS HERE!!

(REAL-TIME ENTRY)

I haven’t written in a full week because I wanted to be PRESENT for every little moment of Christmastime.  My camera has been rolling regularly, but to close myself off for hours in the office to type was just too much time with Mom and Dad for me to sacrifice.  There is a fine line of truly living in the moment versus trying to document everything.  I chose to be where I thought I belonged this week.

Dec. 23 was our annual Firek Xmas with Dad’s family: his two local brothers, my six cousins plus their kids, spouses, and my immediate family.  It was meaningful for everyone to have Dad present, and I found it beautiful that everyone wanted to know how to meet him best on his terms: if it was okay to hug him, talk to him, etc.  I told them to walk up to him, give him a big hug like usual, and include something like, “Hi, Uncle Frank, it’s me, Jason!”  Just like when interacting with someone with a physical impairment, I find that the stigma associated with this disease is that if people don’t understand the degradation or aren’t comfortable redefining their interactions, then they’ll probably just ignore the person.  And that’s about the worst thing that could happen.  My dad still loves people, and socializing, and hugging and touching!  Bring it on!  Make him smile!!

The climax of our Dec. 23 celebration was the gift-giving and Mom helping Dad deliver his annual Twas the Night Before Christmas poem to the crowd.  Much like how you can sing along effortlessly to a song on the radio but could never remember all the words on your own, Dad kept in time with the lines as Mom recited them with him.  If she paused, Dad would quickly get stuck and wait for her.  And he wasn’t addressing the crowd like the age-old performer he is; instead, he was looking into Mom’s eyes as if they were playing a game together.  He participated in the gift exchange as much as possible, but I kept an eye on him and realized that he wasn’t as present as the rest of us – but he was still making a special appearance in his own way.  After the hilarious yet over-stimulating White Elephant gift exchange, Mom lovingly passed out a matching gift for each person present.  The reactions were beautiful as people realized that they now held Dad’s long-awaited autobiography in their hands, with a personalized, heartfelt and handwritten note inside the front cover by my mother.  Dad was pretty oblivious to the emotional charge in the air.  He keeps forgetting that his book has arrived and even sometimes that he wrote a book. 

My cousin Danny walked up and asked Uncle Frank if he’d autograph his book; my dad obliged with the help of my mother and the signature shockingly resembled his old penmanship!  Then my Aunt Liz approached Dad for a 2^nd autograph and you could see the moment his brain broke from the over-stimulation and over-processing.  His signature continued on for 2-3 lines with the same loop-de-loop, and then he turned to my Mom and said, “I don’t want to… do this anymore.  I’m… I’m not having fun here.”  The look on his face was intense and stern, and I immediately took his arm and guided him gently upstairs to a quiet place by the Christmas tree where his mind could settle.  We sat side-by-side on the couch and I stroked his hand endlessly as he sat there with his eyes closed.  The muffled sounds of the party juxtaposed against our quiet moment of solitude just made my heart ache with the sadness of the moment.  It hit me again like a ton of bricks that my dad is departing our world at his own speed.  And like the social, loving gentleman he is, he still wants to participate in the parts he can.  We just have to be sensitive and protect him from the outside forces – sometimes ones that we ourselves force upon him – at the exact proper balance for his own peace of mind.  And this balancing formula comes with an ever-changing scale.  Each time I realize he isn’t keeping up with us anymore, I cry for two reasons: first, I miss him and want him to be with me; secondly, I realize how much he just selflessly gave of himself trying to keep up and make everyone else happy while he himself suffered.  He keeps teaching me beautiful lessons every day.

Two days later, Christmas Day was upon us and Dad had his 4^th or 5^th good day in a row!  He is finishing some sentences, sometimes even stringing 3 thoughts together in a row (!!!!), using some large vocabulary, shuffling a deck of cards again, and properly associating people he no longer recognizes with their correct spouse or friend.  He amazes me every day! 

For Christmas, I gave him a gift of Magformers which are like magnetic Lego’s®, and he actually used the word “clever” to describe them!  Later, he called them an “optical illusion” – which they are!!  It’s mind-boggling when he seems more present some days than others.  Mom and I think that maybe the constant flow of visitors into our house to care for Dad since the robbery has re-stimulated him in a way that is allowing him to flourish!  And if that is so, we tell ourselves, then he’ll probably do very well at the nursing home where there will be so many people to interact with daily.

There were two things that killed me emotionally on Christmas Day.  Okay, three.  First, that damned “I’ll Be Home For Christmas” song the radio keep playing and playing!  Then every time Dad opened a gift box containing a sweat suit, he didn’t get the tough implication that this was a new outfit for the nursing home we are about to send him off to!  And the third thing that just completely broke my heart was when he said he was ready for bed.  I SOBBED after my brother Frank and 4 year-old nephew Frankie led Dad into his bedroom.  I SO DIDN’T WANT THIS CHRISTMAS TO END…  Because now that means that the end is so much nearer.  And this was probably the last magical Christmas I’ll ever spend with my dad.  It just breaks your heart.

December 21, 2009 – THANK YOU, I’LL BE HERE ALL WEEK!

(REAL-TIME ENTRY)

Yesterday, I was told, Dad slept a L-O-T.  I mean, some of our friends helping out with hours-long shifts at the house said they never even interacted with him because he was always asleep.  It’s days like that when you get worried about him and miss him.

Well… today, Dad was totally ON!  He never dozed off once, never took his midday nap, and was still going strong when I left at 8pm!  There was a constant stream of friends and family members in and out of the house all day, and Dad seemed to know who most everyone was almost all the time.  (Of course, there were still moments, like when his brother Al commented that they had the SAME mother, that totally blew my dad’s mind! 🙂) 

But today I didn’t just spend the day with my dad… HE spent the day with ME.  He noticeably called me by name: Joleen, Jo, Bubba (one of our nicknames).  It was SO EXCITING to have him back and to playfully interact back and forth!!!

At noon, I accompanied Mom and Dad to Dad’s haircut in Farmington with his long-time friend and barber, Joe.  Joe has been cutting my dad’s hair since 1972. That’s 1972!!  Today, I went as a Peeping Tom with my camera, wanting to capture their camaraderie and peek into yet one more friendship in my dad’s special world.  (Plus, I have a feeling that this may have been Dad’s last haircut with Joe since barber services are offered at the nursing home).  I could instantly tell that their monthly ritual was familiar and comforting to both of them, and I found the exchange between them touching and beautiful.  I mean, really, this is a 40-year-long ritual they’ve had together throughout my entire life! 

Joe made my dad feel so comfortable and I could tell that Dad was at peace, having fun and highly enjoying his visit with Joe.  I mean, Dad couldn’t find his way around the barber shop to give me a tour – he even tried to walk me into the cellar closet once – but he knew his buddy, and he knew that chair, and he knew this was a day to be treasured.

When it was over, I cried in the car while driving away from the barber shop.  What I had witnessed there was just so beautiful.  It brought to mind the final scene of Driving Miss Daisy.

And then my dad went on to have such a WIDE AWAKE, INTERACTIVE day!  He was constantly up, playfully rambunctious, F-U-N-N-Y as all get out, and my heart skipped a beat when I saw that sparkle back in his beautiful blue eyes!!  It’s amazing but his humor is completely in tact and his timing is still perfect.  I mean, he even rolls his eyes at the exact perfect moment while delivering a sarcastic line.  Granted, his comebacks don’t necessarily pertain literally to the current conversation at hand, but they make sense in that you know exactly what he intended for them to mean.  I tell you, MY DAD IS F-U-N-N-Y!!! 

Now, as I’m preparing myself to go to sleep for the night, I can’t help but look back on this truly magical day as if it was an early one-time-only Christmas present where I truly was given my dad back.  It was SUCH A JOY to interact with him and play his silly games and retell our silly jokes and crack each other up!  WHAT A GIFT TODAY WAS!  It will truly be in my heart forever.

March 20, 2008 – FLY ME TO THE MOON

(BACK-STORY)

Since Mom and Dad are now both retired, they decided to take advantage of the situation and the quality time that remains between them.  They planned a 2-month trip and called it their Retirement Vacation.

The social butterflies that they are, with friends from coast to coast, they worked their way by car down to Florida.  The next phase of their Retirement Vacation was to rent our old family home in Hilton Head Island, South Carolina.  I was VERY much looking forward to meeting them in Hilton Head with my brothers, sleeping in my old bedroom, drifting off to sleep with the waves crashing…

But then Mom suggested I fly to Florida to meet her and Dad there instead.  They apparently thought that a couple weeks of quiet, quality time – just the 3 of us! – would be just what the doctor ordered for me.  However, it was only on the plane today, as Michigan got smaller and smaller in my window, that I realized just HOW much this was the most BRILLIANT idea ever!!

It was such a heartwarming relief when their car pulled up at the airport and they got out in shorts and smiles to welcome me.  I started melting in relaxation right then and there in the backseat of their car… then in my room at their condo… and then by the pool in their backyard. I started to feel a calming sensation, something totally new to me, and I happily surrendered in my lounge chair in the sun…

We were at the pool perhaps 20 minutes when Dad decided that he needed a hat to shade his head from the sun.  Charming as always, he asked if we needed anything and then he walked inside.  Ten minutes later, he was back, happily eating licorice, carrying Diet Cokes for us, a newspaper under his arm – but no hat.  Mom asked, “Didn’t you want a hat?” to which he exclaimed, “Oh, that’s a great idea!” and off he went again.  After a few minutes she suggested I go in and help.

He was grabbing a book off the counter, and I suggested, “Hey, Dad, why don’t you grab yourself a hat for the pool?” to which he agreed and walked into the bedroom.  He walked out satisfied, no hat in hand, and said, “Ready?”  I said, “You know what, I’m just gonna grab you a hat so your head doesn’t get sunburned,” to which he said that was probably a great idea.

The rest of the wonderful day, I had a persistent awareness of me and Mom jumping up a lot to help Dad find things.  At one point late in the evening, he was wandering around from room to room looking for something and I whispered to her whether we should help.  She said that sometimes she just lets him look for a while by himself.  And then she admitted that it actually gave him something to do and allowed her a short break.  She added that sometimes he actually finds the item he’s looking for and she doesn’t have to get up after all!  🙂

Me happy to see Mom and Dad at the airport!

Me and Dad chillin' poolside - with his hat!

December 19, 2009 – THE HITS KEEP COMING

(REAL-TIME ENTRY)

Man, the hits just keep on coming!  My mother went around the house today with a copy of my parents’ Last Will and Testament to see what had been promised on paper to my brothers and me but was now nonexistent.  My poor, poor mother – she discovered yet another treasured item gone!  When she called me today, I was lounging on the couch still shaking off the remnants of last night’s over-the-counter sleeping pill.  My heart sank for her when she told me, but I felt more empty than upset.  Then, about an hour later, while cleaning up and doing dishes, it hit me.  And I started to cry in my kitchen.

JUST when you FINALLY acclimate to a new really, really low spot and a cruddy set of circumstances, there’s MORE!  Right IN your face!  It’s a really tiring game right now of “how low can you go”.  However, despite the regular tears and heartache, I know in my heart that we’re fighters and survivors and good people and that my mom and I are going to make it.  At least we have one another.  And it could be worse – I could NOT be crying, I could be burying all this inside and allowing it to brew into the perfect storm.  But I’m dealing.  We’re coping.  As best we can.  One breath at a time. 

The countless emails and blog comments I’ve received this week have allowed me to miraculously heal while simultaneously grieving.  I am really thankful for that and for everyone from all walks of my life who have bothered to reach out.  That is a beautiful thing.  There IS some immeasurable power in reaching out and sticking together.

One of the countless emails was from my parents’ neighbors, Steve and Noël, and it included this link to a powerful music video.  I had tears streaming down my face the whole time I viewed it.  “One Love” by Bob Marley has always been one of my favorite songs that somehow can transport me to “my happy place” no matter my surrounding circumstances.  However, it had a whole new level of meaning for me today as I considered the hundreds of people who have been there for us and who won’t let us go down alone.  “…Let’s get together and feel all right…”

December 18, 2009 – ADDING INSULT TO INJURY

(REAL-TIME ENTRY)

My eyes are blurry with exhaustion as I type this.  As soon as I’m done, I’m heading to bed to pass out (at 5pm!).  WHAT a whirlwind 24 hours we’ve had!

First off, in order to give my mom some much-needed time and space for unplugging from the constant madness swirling around her, I sent her and Mary (one of her high school best friends who flew up from Florida to support us for a whole week) on a local 24-hour hotel/spa package getaway.  I hooked them up with top-of-the-line service and amenities and prayed that she’d be able to decompress some before Christmas hits next week and then we admit my dad into Sunrise Assisted Living the next week.

However, shortly after their arrival at the hotel as they were just beginning to settle in, the detective investigating our in-home robbery called my mom with the news that the two male punks who worked for us were now both in jail!  (Here she goes again getting sucked back into the harsh realities of her life…)  Following a lead that one of them had sold a huge batch of jewelry to a local pawn shop last month, the detective arrived at the pawn shop to interview the owner – and IN walked one of the guys with more jewelry to pawn!!!  BUSTED!  His roommate was sleeping in the car outside and they both were led away in cuffs!

The upsetting news (besides confirming that these boys had smiled and hugged us daily all the while robbing us under our noses!) was that ALL of our family jewelry was melted down!  The pawn shop owner waited the legal wait period of a mere nine days, then popped out the stones and melted down every last love token of my parents from their 50 years together.

To add insult to injury, the boys got barely ANYTHING for the exchange!  Honest to God, had they just ASKED us for money, I’m sure we would have given them more than that just from the good of our heart!  But, instead, they chose to do THIS TO US???  It makes you want to vomit.

Refusing to leave it there and wanting to warn other families about the potential pitfalls of allowing hired help into your home, I called WDIV (the Detroit NBC affiliate where I used to work as Associate Director) and offered them exclusive coverage of the story – and they said we’d be the lead story at six o’clock!  With my mom in a massage and unreachable, I raced and managed to get the news crew in my parents’ home to tape my interview and meet my father, all before she arrived back home!

(­Click here to watch the WDIV coverage of our story.  NOTE: then scroll down below the video screen, click on the box that reads “Search All Videos” and type Alzheimers, then change “Today” in the next box to “Last 30 Days”, and click on the photo of my parents with the caption “2 Men Accused Of Robbing Alzheimer’s Patient”)

The moment she walked through the door, I told her not to take her coat off – we had to go the police station right away to try to identify more jewelry and they were about to pounce upon the boys’ apartment.  So, with massage oil still in her hair, she and I raced off to the station while she tried to digest that we were going to be on the news in a few hours.  None of the seized jewelry was ours.  My mother requested a silent glare at the two boys behind bars but couldn’t be granted her wish.

Then we raced to Dad’s doctor’s appointment so that his chest X-ray and medical paperwork could get filled out in time for him to enter Sunrise on January 1!  I insisted the doctor also write a few prescriptions for my poor mother who is having the absolute worst week of her entire life and is hanging on by a thread with everything she’s got. 

Thank God for wine.  It really does help the world go ‘round some days.

December 16, 2009 – HIS DAILY ROUTINE

(REAL-TIME ENTRY)

For those of you now helping us take care of Dad at home or for those of you interested in what a day is like for the caregiver of someone living in the later stages of Alzheimer’s, I have thrown together a 15-mintue video for you to view (shot using my cell phone camera vs. my documentary HD camera.)  This video is intended to give you instructions on how to guide him through his day and how to properly care for him.

Lately, Dad is sleeping later and longer, is dozing in and out of constant naps while he is up for the day, plus, he takes a nap sometime after lunch – you’ll be able to tell when it’s time because he won’t be able to keep his eyes open any longer.  😉  Besides guiding him through his day, you just need to watch him for his own safety so that he doesn’t place small things in his mouth that don’t belong there (it’s not typical but it has happened with paper napkins at mealtime or with coins, etc.).  Other than that, just being a companion and friend is what he needs.  I’m sure you’ll notice once you’re with him for a while that constant conversation and over-stimulation aren’t necessary for him anymore.

THANK YOU for caring about my dad.  And for supporting my family in this terrible time of need.  There is NOTHING like friends and family!  xo

December 15, 2009 – WHO ARE YOU??

(REAL-TIME ENTRY)

My dad is fading away now by the day.  His degradation milestones used to be quarterly, then monthly, lately weekly, but now it’s daily.  The magical sparkle in his charming blue eyes that used to light up my world is now totally gone.  I catch him looking through me sometimes when I speak to him or, worse, he doesn’t look in my direction at all. 

Any more than two people in the room talking now seems to be too much for him.  In those moments, he dips out of what’s happening in the room and gets lost in his own private world.  It’s like I can literally see and feel him floating away from us… 

In those moments of disconnect, I find myself sitting on the arm of his chair, stroking his hand, rubbing his shoulders, scratching his back, somehow lovingly touching him to try to reconnect.  When he looks into my eyes and there is some person-to-person connection, as small as it may be, I feel as if everything is going to be okay.  At least I got him back for the moment!

I am seriously trying to figure out how to measure what’s left of him.  I mean, when he looks at me, is the connection 10-percent of what I used to be able to expect from him when he was my powerful, loving, doting father?  Or is this phase really 20-percent?  Or are we down to 8?

In my desperation, I get in his line of sight and gently grab his hands, trying to have just ONE MORE moment with him, trying to coax him back to a place where we can connect one more time… 

It’s almost pathetic how you start clinging to the small percentage that’s left.  How, out of desperation, you get in his line of sight trying to have just ONE MORE moment with him, trying to coax him back to a place where you can connect one more time.  And then you find yourself actually grateful for that one smile or one more “Oh, hi, Jo!”  God almighty, this is such a cruel, nasty disease on so many levels!  I miss my buddy!  And my poor mother – when she got home yesterday and said hi to Dad, he perked up, reached out to shake her hand and said enthusiastically, “Hi, I’m Frank Firek.  It’s nice to meet you!”  You can almost hear your heart breaking.

So today was Dad’s in-home assessment by the staff of Sunrise Assisted Living.  The purpose of the visit was to determine his needs and level of cognition and to then place him properly on the appropriate floor or ward of the home.  Mom has been very worried that when they came Dad would be having a great day and they wouldn’t know the truth about how bad he really is.  Well, that’s not at ALL what happened today.

Mom said Dad was having a bad day when they arrived; he was really out of it.  When they asked him how many children he had, he didn’t know.  Mom says he didn’t even take a guess.  Next, they asked him for the names of his children.  Again… nothing.  Then they asked him for just ONE name of ONE his children… and Dad couldn’t come up with any of our names.  Mom then tried to connect with him, told him look at the family portrait on the wall and try again.  Nothing.  No one was home.  My mom was all alone.

December 14, 2009 – THE CAVALRY IS COMING…!

(REAL-TIME ENTRY)

Following the stomach-turning discovery of unconscionable theft last week at my parents’ home, all of the hired in-home care workers who’ve been helping us with Dad the past number of months were instantly fired.  Only with the help of family members did Mom and I somehow get through the long dramatic week of heartbreak and pre-holiday commitments, including Dad’s final social outings outside of the home.

Today marks the countdown of Dad’s last 18 days at home and the burden is now immense as we no longer can risk inviting strangers into our home.  So, in order to seek help with Dad’s around-the-clock care during his remaining weeks at home, my family sent out a mass plea to loved ones.  To say that our plea was “answered” would be an understatement.  Get ready… The Calvary is coming!!!  🙂

It took me the entire day today to organize ALL of the responses we’ve received into a bulging support schedule!  Aunts, cousins, nieces, neighbors, former neighbors, former employees, plus a massive line of beloved friends (who go back 30, 40, even 60 years!) are about to pounce upon my parents’ home!  I think that the enormous response we’ve gotten beautifully and appropriately reflects the generous, fun, kind, loving, social people my parents have always been.  People really want to help – and there is not shortage of people!  My family is truly blessed in this way.  I can’t even fathom how people who have no support system or financial means struggle along with this horrid disease.

One of my mom’s best friends from high school lives in Florida (my “Aunt” Mary) and even she is coming!  She flies in today for a full week and will be helping with Dad and tending to Mom’s broken heart and full conscience as the certainty of the nursing home edges closer every day.  Only 18 more (hard but special) days remain until my beloved Daddy-O will be escorted by hand out of his very own home and our lives will be forever changed…

March 19, 2008 – A NEW EARTH

(BACK-STORY)

I just finished reading a book that I know has changed my life: A New Earth by Eckhart Tolle.  I can see me in this book, how I fumbled through life up until now trying to keep up with the Joneses and overfilling some areas of my life while others remained empty.  Like, while not being able to see the areas I needed to work on but nonetheless felt the void, I became sucked into the whole idea of consumerism and its hype of needing more… more is better… (I even work in advertising!) – ENOUGH!

I’m definitely on a self-reflection and self-improvement kick.  And I think this was a very fortunate book to have stumbled upon.  Like it says, you don’t undergo transformation unless compelled to do so by some crisis situation.  (Life crisis?  Check!)  And it says that heaven is not a location but rather in finding peace within.  I like that.  I can relate to that.  I want that.  I want inner peace. 

I feel like I’ve been in turmoil for so long that I’m completely depleted – and ready to build stronger upon this new base.  No more over-thinking.  I want true feeling!  I want to be able to trust my instincts again, that voice inside me, that guides me to places I never regret.

This book has introduced the idea to me that perhaps I’m in total and complete breakdown everywhere in my life because I’m personally in need of this experience right now.  Maybe this all happened to get my attention, to wake me up!  After a marriage entrenched in battling egos, I now realize I want peace, not drama.  I want to be okay with the fact my life is upside down right now.  I want to be at peace with it.  All of it.