(Real-time Entry)

I’ve been told that when you attend your parent’s funeral, there is a complex flood of emotions that hit in no particular order at no particular time and that everyone reacts differently.  I was witness to that yesterday on the day that we drove Dad to a nursing home and were forced to walk away with one less member of the family in our car.  We all took different paths over the past couple years, but we undoubtedly all showed up in the same place on that day.

It’s an odd feeling to wake up in the morning and have dread already present, making her head feel twenty pounds heavier on your pillow.  Throughout the morning, I kept having to force myself through the motions of showering, brushing my teeth…  I kept having to shake the emotions out of my head like clearing bad thoughts from your mind with your eyes shut tight and your head shaking back and forth at high velocity until another calm comes upon you and you can continue on with what you were doing.  There wasn’t time for breaking down and there definitely wasn’t space – if one of us broke, it could’ve led to a disastrous chain reaction.  It was agonizing that Daddy-O went to bed crying and cried off and on throughout most of his last morning at home.  It always breaks my heart when he cries, but on THIS particular day I was already doing everything I could not to cry myself and it was difficult to continually overcome.

He cried regularly during breakfast and over small conversation, he cried dancing to Christmas music, he even cried while dancing to his beloved oldies.  I realize he went off anti-depressants a few days ago and that that may all just be coming into play for him now, but the timing was eerie, like he almost knew that this was a somber moment in which something big was about to change.  At one point, I urged my mom to take Dad out for a walk in the cold, fresh air as nothing else was getting him to stop crying.  As she was bundling him up he said to her, I know what’s going on here.  You don’t want me around anymore. I’m sure it’s one of his typical comments that had no basis of truth and that we were projecting – but how do you really KNOW???  It felt like we were abandoning him and it was the most heart wrenching experience of my life.  I don’t wish this sort of situation upon ANYONE.

On the drive to the nursing home, I could see tears pooling up in Mom’s eyes as she held Dad’s hand in the backseat.  To save her from herself, I jumped into an old song we used to sing in the car as a family on long drives.  As Zippity Do Da filled the car with energy, I prayed that Dad couldn’t sense the underlying tone of it all.  We sang one song after the other until we became too emotional to process yet another title and then we drove the last few miles in near silence.

We arrived at Sunrise Assisted Living just prior to lunchtime and were led into the Private Dining Room we had reserved.  Mom kept saying how “nice” the new “club” was, how they put a lot of money into their pretty furnishings, how we should start coming here regularly – to which Dad agreed on all accounts.  Many times during that lunch experience I found myself not able to breath, shaking so hard I might drop the item in my hand, excusing myself from the room, and dashing out the front door desperately needing the fresh, cold air to refill my lungs!  I found bizarre solace in a giant red Christmas bulb dangling by a thick red velvet ribbon swinging outside in the wind.  I found I could focus on that and somehow hypnotically return to a place of emptiness where I tricked myself into stopping the tears and then would walk back in the door.  A couple times I didn’t make it through both sets of front doors before having to run back outside to try to recompose myself all over again.  

After lunch Mom said aloud, Well, why don’t we take a tour of the new club!, and Mom walked through the rooms  with her arm locked in Dad’s.  After seeing the main areas, we walked down last remaining hallway and I pressed the code into the keypad to unlock the door to Dad’s new home: the Reminiscence Neighborhood.  Everyone piled into the much-quieter part of the building and as people gravitated toward and eventually into Dad’s new bedroom, I turned up a stereo with a Mary Poppins CD in it, cranked the volume, and danced my fears away with Dad by my side.  It was a joyous balls-out ballet of self-expression!  After a few songs, while we were still smiling and dancing a man announced to us that karaoke was about to begin in the other area of the home near the front door I kept using as my escape.  I escorted Dad there knowing that I could continue to distract myself and transport him to his happy place with the right songs. 

I don’t believe that the nursing home ever saw the likes of Frank Firek before!  We burned up the “dance floor” flailing in any direction we wanted, smiling, singing the words to one another as we danced our father-daughter dance that is so familiar to us by now.  The entire room was properly seated – but for us!  I heard one lady grumpily complain, Why does that man keep standing in front of the TV!  Another woman was very agitated by our uninhibited behavior, apparently uncomfortably anxious that my dad might trip over the microphone cord at any moment.  I reasoned in my head, Oh well, they’ll come to understand the force of Frank Firek soon enough!

My sister-in-law, Amy, and I kept Dad busy with karaoke and dancing for about an hour – he even got one lady up to dance! – while the others ducked behind closed doors to finalize paperwork and other serious things. Sensing that the point must be nearing for us to leave, I stranded Amy with the responsibility of dancing with Dad, frenzied with panic and tears in the hallway out of sight as I watched them and felt inconsolably bad. 

Then, Mom appeared and I was told it was time for us to go.  I totally panicked.  I think I repeated over and over again aloud to the group of workers and family members surrounding me, I can’t do it.  I can’t say goodbye.  I just can’t!  I can’t DO IT!!  Mom joined right in with me, and sobbing together we locked arms and walked out the front door.  I can’t properly explain the complex set of emotions that were at work in my heart and in my head.

I wish I was stronger!  I wish I had had the strength to actually hug him goodbye – my Daddy, my best buddy!!! – tell him that I’ll be back, that I love him… but I couldn’t!  I honestly could NOT bring myself to look at him one more time and hold it together while my heart was being shredded away in my chest!  This is completely different than CHOOSING not to say goodbye– I literally could NOT go bring myself to go through the motions.  My hands were shaking, I felt nauseous, I felt complete and total panic, and every time I realized I was about to pass out I’d then realize that I had actually stopped breathing.  The event entailed literally forcing myself to take each single breath and every single step.

Hours later at home, properly numbed by the sting of Grand Marnier, I watched as Mom dialed the nursing home to get a status report on Dad.  She was transferred, and then she was completely thrown off kilter when a man answered.  She said, Hello, this is Fran Firek, to which the man playfully and calmly replied, This is Frank Firek.  The look on my mom’s face was complete shock and fear!  She instantly composed herself and continued, Well, hi, honey, what are you doing? to which he laughed and replied, I think I’m trying to solve some problem or something!  She asked if he was hungry and he said yes.  She told him it was close to dinner time and asked him what he was having for dinner.  He said, I’m not sure how I would deduce that.  I, I just don’t know.  She said she’d see him real soon and he replied back, I’ll order it for two and have them put it on the deck!  Okay, gotta go!  Bye!  🙂  And he hung up with a smile in his heart!  We were so shocked by the exchange, by the happiness and excitement in his voice, that Mom and I both completely broke down and deliriously sobbed in relief!!!  He was OKAY!!!  He was actually HAPPY!  And, luckily, he didn’t seem to miss us at all! 

But the same can’t be said from this side.  It’s difficult to put him in this undefined category of not living with us anymore but not totally gone either.  I believe the emotions must be somewhat like those during a funeral.  I feel like he’s gone.  But… then I remember that HE’S NOT!  🙂  There are still special pieces and special moments to be captured with him and treasured in my heart.  I just have to sort out which shelf in my heart to place each emotion on.  And then I have to do it again with my head.

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(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.

 

 

**Click to WATCH this LOCAL NEWS STORY!!**

 

 

If you’ve been following my blog, you know I have been posting my story retroactively and linearly, starting with my dad’s initial diagnosis on April 10, 2007.  Staring today, I am shifting the story’s angle to present day.  Going forward, I will designate a REAL-TIME, CURRENT DAY BLOG by italicizing the entry.  This will enable me to update you in real-time about what’s going on in my life (like a true blog), while still allowing me to fill you in intermittently on the past background of the story.

Here goes…

(REAL-TIME ENTRY)

Yesterday morning I received the most harrowing phone call from my mother.  From her voice, I could tell that either someone had died or she was finally having the long-awaited breakdown.

MY PARENTS HAVE BEEN ROBBED AND ALMOST ALL OF OUR FAMILY JEWELRY HEIRLOOMS ARE GONE!!!  My father’s wedding ring, his engraved pocket watch, his $20-gold-coin-and-diamond money clip – all items left to us kids in their Will – GONE!!  Countless rings and bracelets, necklaces and earrings of my mother – GONE!!  Fifty years worth of gifts signifying the love between them have been grotesquely ripped from our lives!

The most harrowing part of the story is that the police investigation is focusing on the 4 in-home care workers who have been helping us take care of my dad over the past number of months; people who have been entrusted with a security entry code and endless hours alone in our home.  One of these people had enough time to locate a hidden safe and learn to crack the code!  One of these seemingly-caring people entered our home under the guise of helping us care for my ailing father and they STOLE from us the only remaining precious items we’re about to have left of him!!

How COULD someone?!!!!  My poor mother had a breakdown yesterday.  I’ve never seen her so distressed nor cry so hard.  She said she can’t do this anymore.  She’s at the end of her rope.  She’s desperately trying to hold on, but it’s fraying.

Here she is being the most courageous and loving person, caring for my dad 24/7 (all while her heart slowly breaks into a million pieces!), finally trusting someone enough to let them in to help share the burden of care giving, finally getting some much-needed sleep, and they do THIS to her?!!!?

After a long, emotional and exhausting day, the bottom line from yesterday is that a crime report has been filed and the in-home care companies have been fired.  Which brings us back to square one: No support system is in place to help us with Dad!

Together Mom and I made the heartbreaking and anguishing decision yesterday afternoon to finally place Dad in a nursing home.  I called Sunrise Assisted Living and committed to a room for Dad beginning January 1st.  When I hung up the phone, I thought I was going to throw up in my lap.  I’m still crying as I type this. This means we have just 3 weeks and 1 day left of our life with Dad at home. 

The fact that someone took advantage of my parents while they are suffering and in such need and distress is severely disheartening, to say the least.  It makes you sick to your stomach.  It almost makes you disappointed in humanity. 

But then my brother and I sent out an emailed cry for help and support last night to our family and family friends – and the outpouring today has been enormous!  It’s these gestures that snap you back and remind you of how much goodness there is in the world.  Thank God we have THESE people surrounding us in our life, helping us to our (proverbial and emotional) finish line.  Because, as Mom and I have learned, we cannot do this alone.

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.

I made my mom choose a support group and I went with her today.  It was at Holy Cross Church in Novi.  She was nervous and uncomfortable on the way there – but even she admitted that this experience would probably be good for her.  I was so proud of her for being strong enough to go.

And then… no one came.  No one.  It was just her and me and the facilitator.  Do you know how f*’d up that is to finally reach out for help – and no one shows???  It was a very grey, all-alone kind of feeling.  I felt HORRIBLE for her.  God, maybe she’ll never reach out again because, after all, what good does it do anyway?  I pray that she doesn’t fall into the-best-person-to-look-out-for-you-is-YOU mentality.  Wow.  We were the only ones there.

The facilitator asked Mom to introduce herself anyway and then asked her if she had any questions she’d like to ask.  I think it was good that she was invited to ask tough questions in a venue where someone was potentially going to know the answers.  And she was pretty much forced to ask the big, bad, scary questions – because, after all, what else were we going to do for an hour, look at one another?  Her and I have been feeling our way around in the dark on this so far, both too injured and uneducated on the topic to help one another effectively.  Finally, we had someone before us who has seen this happen to others.  So Mom asked… When do you consider a home?  …When do you take away the keys?  …How fast will he slide?  …How long will this last???

Mom even admitted aloud that she still hasn’t cried since hearing the diagnosis.  That’s two whole months!  The facilitator told her that this was a safe place and to go ahead.  And we waited.  And then my mom cried.  She sobbed.  For about thirty seconds.  And then she shook it off, apologized, and said she felt silly, as she dabbed her eyes back to composure.

On the way out, Mom wholeheartedly thanked the facilitator for her time and understanding.  But we left not knowing if Mom had gotten any real benefit from that experience or not.  I think she did.  Maybe it was having been given permission to finally cry.  Maybe she realized that, even though no one showed up, her support group was already by her side.  Maybe I was enough.