6A

He's been given a label.  That label is 6a.  7 means needing full time care.  Like a newborn.  I hate labels and this one makes it real.  Even more unbearable if that is possible.  We went to the VA last week, did the long walk down the hall, the check in, the doctors, the questions, the clicking of pens, beeping of machines, blank stares, more annoying doctor chatter, tears.  Mom talked to the social worker.  And so came 6a.  Who would've ever thought you could hate a number/letter combination with such passion?  The hate is tangible.  

Every day is just us moving forward, mostly without a plan and for me mostly without feeling.
Just. Keep. Going.  The most I let myself feel, which is almost nil, is right here on these pages.  This blog is my outlet.  But I can tell you this; I've never felt more conflicted in all of my life.  Sometimes I can't breathe.  I feel sad, I feel lucky, I feel terrified, I feel angry, I feel angst, missing the first man I ever looked up to.  Missing him when he's sitting right next to me.  Missing the strong Marine that once chased me around the house and out the front door because I swore at my mom.  All 7 of us had a healthy fear of my dad.  What he said went and that was it.  And this I know; that we will lose him twice.  The first time has been for the last 10 years.  Ouch it hurts.  And when he goes, am I supposed to feel relief?!?  Because I can't watch him in this pain anymore.  Not physical pain of course, but those weathered lids get red rims and tears form and it brings me to my knees.  No shit.  This isn't fucking fair.

I have talked to so many people about my dad.  I've compared stories, symptoms, and every person that has dealt with Alzheimer's or dementia has a relatable story.  Sometimes when I tell someone who doesn't understand the disease, I get the "well at least it's not cancer or something."  I think earlier in the progression I even uttered those words.  I don't feel that way anymore.  This is horrendous; it's actually physically painful to watch my dad fade away a day at a time.  And even more agonizing when there's a moment of clarity for him and he knows he doesn't know.  Does that make sense?  My days with him are spent grabbing onto moments.  Not hours.  Moments.  And I can't help but feel robbed.  My best friend explained it perfectly to me the other day as I'm crying in her ear, telling her I don't know how to feel.  Her words "the essence of Bernie is a strong, unwavering presence, and now he's a shadow of that.  It's your turn to be strong and unwavering for him."
So true.  And so hard.

Our family meeting this Friday was just the 7 siblings and how we can all help mom with what she needs for dad.  The first sentence mom mustered through tears was "I can't even believe we're here talking about this."  It was a moment, for me, that was like a swift kick in the stomach ... and I wanted to stop right there and just say "ok let's just sweep this under that right there rug."  lol not gonna happen.  So for about a half hour my 5 brothers, my sister, my mom and I all sat, passed out information about Alzheimer's care and talked about our dad.  We laughed really hard, we cried, we asked questions.  What's in store?  We don't know.  How long do we have?  We don't know.  What should we do?  We don't know.  It was pretty tell all .. **enter sarcasm here.**  I mean how do you even talk about this?  I'm just going to have a conversation with daddy, tell him I'm not ready to lose one more piece of him, I want him back and it'll be fine.  Someone pinch me.

This little lady of ours is the oldest soul I know.  I say that all the time.  Papa is Drew's favorite guy.  The other day I picked her up from school and I made the mistake of calling dad and telling him I had to go show a house, then pick up Drew and we'd be over.  First of all he usually comes with me to pick up Drew and I know (I was thinking as I was relaying my plans to him) you can't tell him too many things at once; it throws him off.  He can't grasp more than one thing at a time.  So I pick Drew up and call dad on the way over there.  He's on my SYNC in my car so Drew can hear him.  He says he's somewhere else.  At a restaurant.  I said "how did you get there?"  He said "I'm still trying to figure it out!"  Then he said he was at a donut shop.  At that point I knew he wasn't at a donut shop but Drew was convinced.  She was sobbing in the back seat and begging me to go find her papa at the donut shop he said he was at .. she just knew he "took a break at the donut shop!"  Of course I got home and he was there ... 100% confident we were at the restaurant.  He was sitting in his own living room.  Drew was so relieved to see him and asked him "why did you think you were at the donut shop?  Do you want some donuts, papa?"  Although he chuckled, through it I saw his heartache.  And so did she.  She looked at him sweetly, put her little hand on his and told him it was ok because everyone gets confused.

I'm exhausted.  And I'm worried about my exhausted mom.  To say she is amazing sounds too cheap. I know she's tired and I know she hurts.  It's another facet of this.  My mom.  I can't begin to understand what she sees.  This is our dad.  This is the love of her life.  Doesn't anyone have a magic wand laying around?  I could really use it.

To dad, I miss you.  I love you and what you've given me in 35 years is irreplaceable.  What you've given Drew in 5 will forever be unmatched.

To mom, I love you.  I can't pretend to know what you feel but I am here. Always. And we will be ok.

To Drew, thank you for choosing me.  I can't promise to be here for the rest of your life, but I will love you with everything I have for the rest of mine.


There is a song that I love and a line of that song struck a chord with me:

"May you have a strong foundation when the winds of changes shift."

Indeed.

       

    

          

The Appointment

A few weeks ago, mom and I took dad to the VA for his first "Geri Pack" appt.  His primary doctor there said that since he is 84, he should now be seen by the geriatric doctors.  They are very knowledgeable when it comes to the elderly.  Ugh.  The "elderly."  My dad isn't elderly.

Anywho, we get to the VA; mom drops dad and I off at the door and we start the arduous trek down the never ending hallway.  Every time we walk these halls, dad and I are arm in arm.  We slowly saunter.  I know he sees what I see here and maybe for a minute he thinks what I think.  I see so many men and women, some old, some young, some with canes, wheelchairs, missing limbs, long beards, cloudy eyes.  Some with family, and some without a soul, all alone.  These men and women all have that one thing in common.  They've given their lives.  They all carry with them experiences I could never fathom.  Their branches displayed on their hats, t shirts, vests with medals.  Proud mostly, and some sad.  If I'm lucky enough to look one of them in the eye, I always nod.  Small, but what else can I do to say thank you from the bottom of my heart in a 2 second walk by?  From the time I start the walk until we end where we check in at the Purple Team, the lump in my throat just lingers.

Berns gets called in.  By this time, mom has parked the car and made her own trek.  I wonder what she thinks as she walks with a purpose toward us.  Mom always has her game face on.  Always.

It's gonna be a long day.

As we're sitting there, watching the nurse take dad's vitals as usual, this visit already feels different.  There's a crowd of people bustling around, beeping, clicking of pens ... mindless chatter from the nurses .. "How do you feel today, sirrrrrrrr?"  If you can imagine how someone talks to a 3 year old in a Halloween costume .. like that "Awww, you're so CUTE!"  thing that drives me crazy.  The man is 84.  He has been here longer than you have; show some respect.  Stop talking to him like he's a child.  You're dumb.  Yep, that's where my head was that morning.  Everyone was dumb.

Pops shoots me a look from his chair .. it's the look I get every once in awhile, like "is this right?  Am I doing the right thing?"  And whether we're at home or out somewhere, I get that look from him and return the instinctive nod immediately.  It's unsettling to know he might not know what's going on at any given moment.

My mind was starting to wander ... I mean, I'm sitting next to my mom.  My rock.  Me hers.  And together we are looking across the room at this man that has been the glue that holds it all together.  He's always been strong, bold, active, positive, intimidating ... and I loved that.  I loved that my friends would say "Woah ... I wouldn't want to be on his bad side!"  So now, really, the roles are reversed.  Every single role you can imagine is absolutely reversed.  We are dad's rocks.  And we are forced to be each other's.  Our whole family leans on our whole family, if that makes sense.  At the same time this experience has been horrifying and unbearable, it's beautiful how we lean.  Does that make sense?  It does to me.

So now the vitals are done.  It's time for this annoying (It's just the way I feel; Believe me, I know she's doing her job) lady to start drilling.  And drilling.  So first she asks my amazing father to draw the face of a clock.  Blank stare.  The one I always talk about that I hate.  He had no idea what she meant.  She then told him to write a sentence.  He had no clue.  She rattled off some words and wanted him to repeat them to her.  Nothing.  "Name the kind of animals on this page", etc.  I felt like I was in Drew's classroom.  That was the level we were at here.  I wanted to stand up and scream to the top of my lungs at daddy.  I wanted to shout "DAD!!!!  YOU KNOW THIS!!!!  DRAW A FUCKING CLOCK!  A SENTENCE!  ANY SENTENCE!  THOSE ARE HORSES!!!  OMG THOSE ARE FUCKING HORSES!!!!  THE WORDS SHE SAID WERE "SHOE, TELEPHONE, AND NEWSPAPER!  NOW HURRY UP AND TELL HER WHAT I KNOW YOU KNOW SO WE CAN FUCKING LEAVE AND PRETEND THIS DIDN'T HAPPEN!"  Nothing.  The yearning to yell was almost too much to take.  It was like being in a really bad dream and you can't wake up.  I mean the worst dream you could ever imagine.  When I was young, I remember always having this dream that I was floating away in a hot air balloon and I couldn't get down.  That's it.  That's this feeling.  Panic.  This man, the only hero I've had for my whole life slips away a little each day.  And I am helpless.  I can't do a fucking thing.

That day was exhausting.  Mom cried.  I cried.  Dad was quiet.  Really quiet and there were several instances where I glanced over and saw the red rims of his weathered eye lids.  Dammit.  I don't think I've ever wished that bad for my childhood to come back, just for a minute.  I want to talk to my dad so bad.  I miss him immensely.

It's unbearable at times.

I always bounce back.  I really do.  I consider this a gift.  Maybe it's denial.  I'm not sure what it is, but I always bounce back.  I have to be strong for mom, Amy, and everyone else because sometimes they're not.  Sometimes it's just too much.  It's funny they say men are supposed to be made of steel, or whatever they say.  Not true.  My brothers aren't handling this well.  In fact, some of them aren't handling it at all and they won't talk about it.  I don't say anything except "I'm here" and take the occasional irate phone call about something irrelevant.  That's how they deal.  And I'm glad I can be here for them.

I'm glad that when I need it, they're here for me.  But I rarely venture down that dark road.  Not doing it.

We go to Florida in a couple weeks and like last year, we're stopping to see uncle Jimmy and all of my cousins in South Carolina.  I'm so grateful.  I'm so grateful that at any given time, there are about 100 family members I can call for comfort, an old pops story, advice, or just a laugh.  We need that these days.  Dad needs us and we need us.

Drew said something the other day that, as usual, made me smile.  She asked me why papa gets confused sometimes.  I said "honey, life is a cycle ...." lol I really started with that.  Like she's gonna get it.  So then as I'm laughing to myself and the absurdity she says, "he's so special, mom, isn't he?"

Yes.  My 5 year old gets it.

That right there, Drew, is the most special man I have ever met.


     

    

It's taking a turn ...

It's taking a turn.  I could say for the worse, but let's just say it's taking a turn.  For about the last month, dad's been having a hard time forming words.  We can all see him thinking ... and thinking ... and it doesn't come.  He's so frustrated and so sad.  He said to me yesterday, "I hope this doesn't get worse."  And his eyes filled with tears.  It was only Drew and I sitting alone with him at the table.  I looked at Drew and she could see papa's sadness.  She sees what he's thinking often.  She said, as she rubbed his back, "Papa, don't give up talking.  Think slowly, papa."

In the last couple of days, two of my friends have suddenly lost their fathers and their fathers were young.  It reminds me how lucky we are, but I rarely forget that.

It's funny, I pulled out some old family videos the other day and realized how much pops has changed.  I can't remember the last time I was able to have a meaningful conversation with him besides the ones I have with just his eyes.  I miss him.  A lot.  I really didn't realize how much I miss him until I saw those videos.  That right there is one amazing man.

So here comes the holiday season.  Dad loves the holidays; everything about them.  I remember when I was young, we used to go to any store that sold anything Christmas and he would just about buy out the whole place.  We had trains, figurines, dancing Santas, snow globes, and about 15 stockings on our rock fireplace.  Every Christmas morning mom would have her "list."  It was a numbered list of the Christmas gifts they (Santa) bought for us so we couldn't snoop!  Those were the best and I'm so grateful they're all on tape ... though we made fun of mom for walking around filming our every move, I'm so glad she did.  Every single family member was there .. before any conflict ... before any arguments or turmoil.  Together.  Every single one of us.

I always tell my mom that I had the best childhood and thank her for it.  I knew from the time I can remember that not only did my mom and dad love me more than anything, but so did my brothers and sisters.  It was the most fierce sense of security.  I can't even explain it.  I would often just lay in my bed at night, siblings in their rooms, parents down the hall, and think to myself "thank God this will always be like this."

Isn't that the way kids think?  They haven't learned yet that there are no guarantees in life.  I'm so thankful for that.  I'm so thankful that Drew thinks that way right now.  When you finally figure that out, it can be pretty painful.  Terribly painful, actually.  Life changes.

And really what choice do I have except to accept?  It's all up to me how I play these cards.  For sure.  It's really easy for me to get into a dark place remembering what was and missing that assurance that "this" would always be.   The best memories of my life are when I lived on Parklane in Livonia.  At the center of all of our worlds was a young, vibrant mom who was more loving than anyone I had ever met.  And a dad who was stronger than any other man.

My wish for Drew.  That I can give her this security, this childhood, these memories, and the will to play her cards.

And this to my mom and dad, just thank you, as always.  Thank you for giving me that security.  Thank you for being at every play, every boring Catholic school singing program, every basketball game, every figure skating lesson, every tennis match, every riding lesson ... it just goes on and on.

And this to Drew, I promise that one day you will be sitting on your couch thinking of your wonderful childhood.  I promise you will feel like your papa has been here all of your life, and I promise that you will smile thinking of the infinite love you have had.

We're only here for a short time, kid.  We're gonna make it good.

MY life .. not just his

I haven't written in a long time.  I'm not sure why.  Sometimes it's easier for me to live the moments and let them go.  But when I get the urge to write, that's what I do.  I never feel better until it's on paper.

For the first time in 5 years I'm moving away from mom and dad and it will be Drew's first time in her life without them in the next room.  Big changes for us.  And for papa.  I know in my head that everything is going to be ok.  Everything happens for a reason, and no matter what, time just keeps on ticking; it stops for no one.  Soak it in.  I'm always reminding myself to do that.  Soak it in.  These are the days and the moments with dad I'll wish I could feel again.  Even if just for a few minutes.

I wrote the above about a month ago and couldn't keep going.  Writer's block, apparently.  So I walked away from it until today and here it comes.

Mom and dad moved into a condo that's a ranch.  That's what's best for dad, the stairs really aren't his friend anymore :).  He's frail and pretty unsteady on his feet.  We go over there frequently to eat dinner and visit.  Every time we go, I see that stare.  It's the blank stare that I loathe.  I really hate it.  I always wonder what he's thinking in those moments and I always dream about what he might see.  I say to myself,  "I'm sure he's constantly thinking about number one, the job sites :), his young wife, their traveling adventures, his kids and their shenanigans, his grandkids, his Harley he used to ride, the cars he used to paint, the horses he raised and trained, his dream home he built, the friends they always used to go out with" ....  IS he really thinking of all of that?  No, I think those are the things that are always going through my own head.  His thoughts are the simple kind these days ..  Quite possibly, and more than likely, his thoughts are even smaller and more fleeting than I can imagine.  Today for instance, he couldn't believe the Tigers blew that lead.  But only because he was watching the game 3 minutes before that.  Living in the moment is the only way for him.  Right now is the only thing that matters.

Today I found out that brother Mike took dad's truck from him.  For the last time.  We have all discussed it and we agree that he shouldn't be behind the wheel.  Not only could he get lost and hurt himself, but he could hurt someone else and of course none of us want that.  So Mike told him he needed to use his truck for the pool company this summer.  Pops said yes right away.  If it has to do with a pool, there's no question he'll do it!  It was a great plan and it worked.  No protesting.  No explaining.  Just like that .. the truck is gone.

So why am I so damn sad about this?  It's tugging at my heart, the sadness is just overwhelming.

I figured it out.

It's me knowing that I will never pass dad on the road again.  I will never pull up in the driveway at the same time he is leaving to go to a job.  I will never make sure his insurance slip is in the glove box in case he gets pulled over (yep that happened a million times and he always got out of it!), and I'll never have to go take his spare key to him again because he locked his keys in his truck.  It's another part of my dad's life, of MY life, that's slipping away.  There are a few memories I have .. a few staples, if you will .. of my childhood that are the meaning of my dad and my brothers.  They are the pools, the trucks, dirt, the ten or more pairs of work boots at the front door, the cement stained jeans, the hands that mom would yell about before dinner.  "Go wash those before you even THINK about filling your plate!"  Ahh, I couldn't have better childhood memories.  So for me, the truck ... it's so much bigger than just the truck.  It's part of the best memories I hope I can hold onto for the rest of my life.

  

Only a minute glance into the best memories a kid can have are above.  I can only say this one thing that I have said in many blogs before.  I'm so grateful that I've had him, my dad.  He's truly one of the greatest men I've met in my life.  There's no one else like him and there probably never will be.  

If you would read my blog, dad, which I know you probably never will, I would want you to know how much you have impacted my every goal and aspiration.  I strive to be the parent you are to me, every second of my life I've known you love me more than life itself and I can only hope that one day Drew feels strongly enough about her love for me and the memories I helped create for her that she wants to scream it on a mountain top and tell everyone she can get to listen.

.... Or simply write a blog of her thoughts that radiates her endless love for me ..... 

The Most Wonderful Trip

On Thursday, December 12th, Mom, Dad, Drew, and I took off in the car for the Holidays.  This year we decided not to stay home, but to make the season about family out of state.  First stop Irmo, SC to see Uncle Jimmy and all of my cousins there.

As everyone knows, my family is gigantic.  Because of two people, Grandpa Jim and Grandma Rose, there are probably close to 400 Assemany's.  That's incredible to me.  And as most also know, because of dad's dementia I have vowed to do whatever I can to make sure he sees his family, reminisces, and has conversations about the past when he was young with his brothers and sisters, building pools, pouring cement, riding horses, painting cars.  I think before all is said and done, we all deserve a trip back to where we were the happiest and most free.  When the days and dreams in front of us seemed never ending.    
         

                   

Lynn took daddy to see uncle Jimmy in his group home.  It was surprising that uncle Jimmy knew that dad was his brother right away.  They both have dementia which definitely provided some comical moments.  If you can't laugh at what is life, then what can you do?  Make the best of the circumstances:  My motto as of late.  Humor is what gets us through.

The second night was spent at Danny's barn.  The place was incredible, Danny's little gem; mainly because it's his gradual creation, homemade from scratch, littered with memorabilia, pictures, music, drinks, and laughter.  But mostly because the whole time we were there we were surrounded by family, by more love than you could ever imagine, and by stories that made me laugh so hard my stomach hurt; crazy how many noteworthy stories can be told under one barn roof, on a Friday night.  Some hilarious banter between pops and uncle Jimmy.  At one point, uncle Jimmy had to go to the bathroom so he had dad hold his ShihTzu, Little Bit.  "Bernie, just hold the damn dog, I'll be back."  Haha dad did what he was told, but not before he protested.  If you've ever seen the movie Grumpy Old Men, there's nothing else to say.  

I remember thinking to myself in a moment of laughter how lucky we really are.  I've said it a million times but it doesn't hurt to say it more.  There's nothing like family.  There's some kind of comfort in knowing that when the hurt gets too much, there's always somewhere to go.  Always.  Dad was so happy to be there.  He said his brother looked great and his nephews "did good with their wives."
Truly something dad would say.  

He's all about the ladies.

                                      

                                       

Tim let me look at this sign in book that uncle Jimmy and Aunt MaryLee had at their house in Michigan.  They would have everyone that came to the house sign in.  It's the coolest book to look at.    The smallest piece of history right at your fingertips.  All kinds of signatures ..  Dick LeBeau, 
Chuck Dressen, a thousand friends, and then I scanned down the page to the last entry and there was dads.  October 20, 1964.  He was 34 years old.  My age right now.  It was signed in the most beautiful handwriting you've ever seen.  It occurred to me right then how that was one of the things I remembered most about my dad when I was young.  

I'll never forget his penmanship.  

So thank you to my family for that night.  I know I won't forget it.  I know that as long as he possibly can, dad will hold onto it too.  

Only twelve more hours in the car would bring us to my Aunt Lisa's house in Naples, FL.  The beach means so much more than sand and waves to me.  It brings me back to the family trips every Easter with the Santeiu's, mom, when dad would drive the whole way, unpack the car, pump gas with Mark, navigate through construction, and still manage to find some good tunes.  

Now when he visits the beach, dad sits on the shore and stares into the water for hours sometimes,  maybe reliving his past, maybe making peace with what is here.  The sun bakes him into the deepest, darkest tan I've ever seen in my life.  That's another thing I will always remember.  That tan.  Sometimes so dark you can barely see the Devil Dog tattoo on his right arm.  Daddy was a drill sergeant in the Marines, you know.    

I'd give him a whole lot more than a penny for his thoughts.  

This was the first time Drew saw the ocean.  Haha and the love affair continues.  She can't get enough shells in her wagon, sand in her bathing suit, or salt in her eyes.  She loves everything about this "ocean" Giki and I always talk about.  Watching her with her papa made me smile every day.  He would walk her down to get shells, slowly sauntering and holding her hand.  

I'm left with the sweetest feeling when I think about it again.

                                   

Its Christmas tomorrow and this weekend I'll be driving home.  This was a long vacation and the whole time, I remembered to remember.  Letting the small moments soak in is what counts right now.  I won't forget this trip for a lot of reasons.  I met some of the most incredible people I've ever met and they just happen to be my family, my baby girl saw my most favorite place in the world for the first time, the love of my life spent time with my family, and any time I get to see pops young again, even if just for a fleeting moment, I always make it count.