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)

April 24, 2010 – Famous Last Words

(Real time entry)

It’s 11am Saturday morning and Dad has been “sleeping” for 38 hours now.  He fell asleep at 9pm Thursday and we haven’t had an interaction with him since.

…But WHAT a last day we had!  J  Daddy-O just couldn’t stop dancing and giving all of his visitors one last amazing day!  How he was STILL going and able to stand (sometimes for 40 minutes at a time!!) with no food or drink for 4 days… what an amazing spirit he is!

Sparky is by his side.

January 8, 2010 – A TURNING POINT?

(Real-time Entry)

Two better days in a row now for my dad – plus last night he was given a sleeping pill which seems to have allowed him to finally get some much-needed rest!  Thank God.

You know, this disease is so interesting in that you’re never sure what you’re going to find when you walk into the room with him.  Just two months ago in November, Dad was starting to have trouble with some immediate family members’ names and faces.  The bottom of the pit was when we introduced himself to my mother twice.  And he had begun calling me by my brother Todd’s name on occasion.  Sometimes he’d even ask me in mid-conversation, Where’d that girl go that was just sitting here? The one with the black hair?  Where’s your sister?  Tell me when she gets back because I have something important to tell her…

But magically sometime in December prior to Christmas, he snapped back a few notches and – even despite the confusion and trauma he’s gone through at the nursing home this past week – he still continues to know WITHOUT A DOUBT who I am, my mother, and my brothers!  It’s a miracle and a gift! – albeit a temporary one, I know. Regardless, we’ll TAKE it!  🙂  It’s so exciting for me that Dad is currently funneling through ALL of the different nicknames he has for me, referring to me just last night as “Shmoe” (aka Joe the Shmoe).  When I left the table for a few minutes, I was told that he turned to my cousin and asked, Where’d Shmoe go?  It’s so cute and playful and I am so bloody thankful every single time he does it! 

We’re not sure sometimes if Dad knows every friend and family member who visits with him but it is amazing how, even on days when he doesn’t appear to know someone by name, he still knows what people are associated with that person!  For example, my cousin Karrie didn’t think Dad knew who she was last night when she visited, but Dad kept talking to her about “Bill” (her husband), recounting some real and some made up stories about his interactions with Bill.  When our family friend Joyce visited Dad at our home around Christmastime, Joyce was positive that he no longer knew who she was yet he kept talking to her about “Kathy” (my aunt and Joyce’s best friend)!  On Dad’s first full-day at the nursing home, when we visited him with my Aunt Kathy in tow, Dad called her once by her full name (which pleased her greatly!) and then proceeded to tell “Jack” stories (her husband).  He’s a very smart fellow and it is fascinating to see the brain at work and which parts still connect on some days. 

Probably because Dad’s last two days have been better and less emotional for him, my past two days have come with some emotional relief as well.  On some emotional purging expedition, I even went and cut off my hair!  I literally put my head in my hairdresser’s hands after making it VERY CLEAR that she couldn’t cut it TOO SHORT or else I might risk confusing my dad.  I want him to recognize me for as long as humanly possible…

There were a few good signs yesterday at the nursing home.  First, I think Dad barely cried.  Secondly, when my mom walked into his bedroom after he had awoken from his nap, she found him standing dressed at the foot of the bed not upset.  He said, Oh, hi, honey!  She noticed that he had removed a framed photo from the wall of her and him in Hilton Head with their favorite band, The Headliners, and it was now peacefully resting on the window sill.  I would like to think that this means that the photos I hung the other night are making a difference for him, that he’s noticing them and perhaps they’re part of what’s calming him when he awakes.  Thirdly, when I arrived last night after dinner, Dad was happily sweeping the dining room floor!!!  Sweeping was a chore he did regularly at home.  I believe this is a sign that he has begun to place pride and ownership in his new surroundings and – in perfect Frank Firek style! – he wants to help out and be of assistance.  He is amazing and it always moves my heart to see him in action like the old days!  Of course, he paused when it came time to figure out the dustpan and he was much better at the sweeping aspect itself.  But in a playful way, he purposely banged the broom against chair legs and wheelchair wheels while he was sweeping, and he jokingly said to the ladies sitting in those chairs, Oh, I’m sorry, was I bothering you??  🙂

He has made a new friend at the home.  Her name is Carmen.  The two positive attributes of Carmen is that she giggles non-stop at everything (so Dad thinks he’s pretty funny!) and that she is an opera singer with a beautiful voice.  It’s great to see her sing and Dad dancing around her!  Music and humor are still two big ways into his heart and they always lead him to his happy place!  I’ve seen Dad kiss Carmen on her hand a couple of times but, then again, which lady doesn’t he do that to?  🙂  Last night, he kissed Carmen on the hand and then he immediately turned to my mom and kissed her on her hand!  What an interesting trio!

My mom and my brother Frank Jr. met with the nursing home director yesterday afternoon, one week into Dad’s stay.  The director was describing how many people get dropped off at the home and then have very few visitors throughout their stay.  Then he commented on how incredibly close our family appears to be and how he can tell that Dad’s moods seem to be directly related to us and his interactions with us.  He is pleased that we are there nearly around the clock during Dad’s waking hours to help him with his transition.  He also suggested that Dad’s violent outburst his first night at the nursing home wasn’t as bad as it sounded and that they’ve never witnessed any behavior even close to that from him since.  Then he suggested that we might want to attempt soon to take Dad out for a day trip to someplace familiar!  So, this Sunday, Dad is going to spend the day at Frank and Amy’s playing with his grandkids!!!  We are SO excited!  A week into the transition, with his meds re-adjusted and his good mood back, maybe we’re at a turning point here.  That would be such a blessing and a relief!  There’s nothing worse than watching a loved one in pain.  I’ll take his smile over tears any day!  xo

December 31, 2007 – A LOVE STORY FOR THE AGES

Today Mom retired.  It was unceremonious, unnoticed by most, yet one of the most significant days of her life.  She followed her heart and took the road home to her husband. 

No longer will he have to sit alone all day trying to fill the hours; she will be by his side and can hoist him onto her wing so that he can enjoy the ride she provides.  I know that the last six months have been hard for her, knowing that she had to finish her duty at work so that the family company could survive, yet wanting to be with her lifelong mate who was suffering at home.  Now, they are free to be together again through thick and thin.

Painfully, this isn’t the retirement she dreamt of her whole life.  Successful at what they did including putting money away, their retirement was expected to be one filled with travel and adventure and love and more tomorrows; not staying at home to help occupy his time while they wait for his final day and inevitably watch every connection they have between them slowly ripped away.  This is a twist of fate for which none was prepared.  Then again, how could one possibly prepare for the treacherous experience of having one’s heart and soul torn into tiny bits?

She is a brave, humble and righteous wife.  She loves her husband at a depth few couples can comprehend.  It kills her to think that one day she will have to let go of his hand.

They are each other’s True Love.

April 27, 2007 – THE WIND IN MY SAILS…

Mom and Dad are home and I rushed over today to see them!  When I got there, Mom and Dad were nostalgically flipping through a photo album on the living room couch.  We hugged, I love you’d, and gabbed about their trip.  After a while, Mom excused herself to go into the office to check emails and I continued to flip through the album with Dad.

We got to a picture of our family at Xmas maybe 6 years ago.  Dad asked with a scrunched brow, “Who’s this?”  I said lightheartedly, “That’s us, Daddy – you, Mom, Frank, Todd and me!”  He looked at the photo for quite some time.  Then I turned the page.  But he stopped me, turned the page back, pointed to the picture and said, “But who’s THAT?”

OMG, my dad didn’t even recognize me!!!

Given – I do have black hair now.  I grew up blonde, was blonde in that Xmas picture,  and Dad knew me most of my life (and his) as a blonde.  But I’ve been black for probably five years now. 

OMG, is my dad going to start NOT recognizing me??  Does it really start THIS fast?  You’ve got to be frickin’ kidding.

Crap.  Maybe I should go back blonde to help him out.  Maybe I should wait until me as a brunette is really unrecognizable to him and THEN go back blonde.  If I go blonde right now, maybe THAT would confuse him even more???  Geez, I don’t know how to sort this out…

April 26, 2007: A PROPER HOMECOMING

Mom and Dad are due back from Greece tonight!!  I can’t even properly describe the elation, relief and anticipation I have in the matter! 

I feel as if I’ve been whirling around and slowly drowning inside an emotional vacuum since they broke the news and left.  I have such HOPE upon their return!  It’s like I can almost breathe again.  I feel like once I can actually see them with my very own eyes it’ll be like they are once again real and alive and by my side.  I’ve felt such dark aloneness in their absence.  I realize I’m losing Dad but I just experienced an earth-shattering view of what life would be like without them BOTH!  My god, I’ve been so lucky having them around – 37 years of their support and involvement in my life.  How blessed my life has been because of them, how enriched it’s become with them helping weave the fabric of my life.

So, I guess, I’m grappling with the thought of… what becomes of me once their gone???  They have always been such a rock for me, the base from which everything for me has sprouted and grown.  They are SUCH GOOD PEOPLE.  I loose my breath when I think that someday they’ll be gone.  Someday, I’ll be totally on my own. 

I mean, geez, I’m married so it’s not like I’m exactly all alone in my life.  But I derive such peace from just knowing they’re around, that I can call them up and involve them more deeply in my life at any moment.  They have taken SUCH good care of me, as a child, a ridiculous rebellious adolescent, as an unmarried adult, even now.  They always do whatever they can to ensure that I’m okay.  They are some of the best people I have ever had the pleasure of knowing.

So, tonight they’re back!  And I want to welcome them home with outstretched arms and a marching band in their honor!  Of course, I’ve settled for the largest bouquet of flowers I’ve ever bought (which I split the cost of with my brothers) – which I’ve secretly placed just inside their back door so it’s the first thing they’ll see when they walk in their house!  I just want them to know that I am SO GRATEFUL they’re home.  That we can resume where we left off.  That it’s not over.

A big Welcome Home!

Trying to put it into words

Sprinkled with a little family humor!