Rivers of Thought

They were a last minute Christmas gift…tickets to see Art Garfunkel. In fact, they were so last minute our seats were in the very last row, a row with only two seats, tucked way in the back of Orchestra Left. The concert was a month after Christmas. As it turned out, timing could not have been worse…or perhaps timing could not have been better.

In the four plus years since Mom died, we have been on a journey.  Even before she died, Mom knew there was something not quite right with Dad, but didn’t know what. It would be almost three years to the day after her death that we finally had a name for it: Behavioral Variant Frontotemporal Dementia, bvFTD for short. Being on this journey with my father is an honor, but it has been (and will continue to be) the hardest journey of our lives..

The week leading up to the concert was a blur. We knew Dad was growing more frail by the day. His falls were starting to happen much more frequently. We knew his cognitive ability continued to decline, his ability to make basic decisions for his own comfort and safety (decisions like to wear a coat, hat and gloves when the temperature was below zero) was fading away. His need for more and more prompting to perform the most basic of the activities of daily living, such as getting dressed, or even eating, increased at an accelerating pace.

And then, the delusions. Somewhat rare in bvFTD cases, but then bvFTD is a rare form of dementia, and especially rare in someone so elderly. In the course of six weeks, Dad relayed several “stories” as fact: visits from mom (dead over four years); a shopping trip he never took; and, the adoption of three children just a few days prior. It was this story that triggered the nursing staff at his assisted-living facility to alert the administrators and the administrators to call a meeting with me (his Power of Attorney) and my wife, Carmen, his primary caregiver.

Time…time…it was time. Time to move Dad, yet again. This time he would be moving to Hickory Hall, otherwise known as the memory center. We all knew it was time, honestly, it was probably past time, however, this was a step I was hoping to never have to take…why couldn’t his body give out before his mind? I scheduled a call with my siblings to talk over the plan. At the advice of staff, we would tell him Wednesday morning, I would take him out of his apartment, Carmen would pack what things he could take, movers would come, and when the room was ready, he and I would take that dreaded walk to Hickory Hall.

It would be easier on Dad if he didn’t have time to think about it. For us on the other hand, we didn’t sleep for days…second guessing the decision…dreading the conversation…second guessing the decision…honestly, being a little pissed at God…second guessing the decision…

Wednesday. The Day. As the grey Indiana morning light began to dimly light our room, we realized the freezing rain predicted the night before was indeed here. School closings, traffic accidents, and meteorologists filled our morning news. After steeling ourselves for yet one more difficult conversation with Dad, the move was postponed a day. Another day (and night) to dwell on the upcoming conversation and the second guesses.

The move would now be Thursday. The day Carmen and I were to be going to dinner at our favorite restaurant and then enjoying the Art Garfunkel concert. My god, we were going to be exhausted. No way to get refunds at this late date. Wednesday evening we set out clothes for working through the move, and another set to wear to dinner and the concert.

The next morning was not much better, but at least the roads at least were clear. As I tried to get in a couple hours of work before our appointment at the retirement center, I noticed a car stopped in our driveway just outside the gate. Carmen donned her coat, hat and gloves to slip-slide her way down the gravel drive (hey, I said the roads were clear, our driveway, however, was still a sheet of ice). It turns out the woman had hit the ginormous pothole a couple blocks north of our house. Her front right tire was flat and the rim bent beyond recognition. She had called a tow truck.

Well, at least it was a distraction. Some time later, I saw another car pull into the opposite end of our U-shaped drive and navigate around to the gated side. After Carmen donned her coat, hat and gloves and made her way down the drive, we learned it was the woman’s husband. He collected her wheel covers from down the street, talked with her for a bit and then proceeded to back out the full length of the drive, running over one of the driveway markers in the process. Ugh!

Finally, the tow truck arrived…and parked in our yard (ugh!) while the tow driver changed the tire on the car. Two hours after first pulling into our drive, everyone was gone, leaving behind the two wheel covers the husband had retrieved.

The distraction gone, it was time to head across town. The conversation with Dad lasted about 30 minutes. He debated as he had in the past. The bitch about this disease is because the cognitive abilities and executive functioning are so degraded the afflicted person does not have the ability to understand they are sick. In the four or five years Dad has been battling this, only once has he acknowledged he has any sort of problem.

The way I describe the difference in this move and the one 18 months ago is this. 18 months ago I was very frustrated with Dad (me not yet understanding the disease). I was able to use that frustration to be stern with him as I told him he had to move. THIS time however, all I felt was heartbreak. It was all I could do to remain strong, yet compassionate; remain firm, yet empathetic. Hell, it was all I could do to keep from crying.

After the conversation, we helped Dad finish getting dressed and I took him down for his morning meds and to occupy him for the next five or six hours. Carmen had about two hours to get his belongings packed and the furniture marked before the staff would arrive to relocate what things he could take with him. Looking around the apartment, I had no idea how she was going to accomplish it. Who am I kidding? I had no idea how I was going to occupy Dad for six hours. I could take him to a museum, but he was so weak he would last about an hour. I could take him to a movie, but they don’t start for another two hours.

As we walked down the hall, I started talking about our beloved Indians. Dad and I had been going to baseball games together for several years. I have never been too sure if he is going “for me”, or I am going “for him”. At any rate, for four hours seven times a summer we hang out at the ballpark taking in a game. Watching players come and go. Laughing at the way the lines are laid. People watching. And talking of my baseball “career”. In Dad’s mind, I was an all star Little League catcher. Leading our team to the league championship. Orchestrating our big win on the final day of the season. (For you Scrooged fans, insert a joke here about the Courtship of Eddie’s Father). Reality was far different. While I loved the game, I really sucked as a player. My role at the all-star game? Catcher? Outfielder? Pinch Hitter? Benchwarmer? Nope…I gave the Little League Pledge before the game, I hadn’t even made the team. So…maybe a silver lining in this dementia-thing (sorry, I have to joke or I would cry).

As we sat at the nurses station, Dad would tell everyone that would listen (and many that wouldn’t or couldn’t) that he was being put in prison today. He was moving to the memory center. My mind was still on how to pass the time. That was when Larry arrived. Larry is probably Dad’s oldest friend. The two had worked together for many years at a couple of different churches and organizations. Our two families were dear friends. Larry stayed with us throughout the morning. Shared lunch with us at the noon hour. And, sat in the library with us while we all talked, waited, and passed the time.

I kept up with Carmen’s progress via text messaging. After lunch I ran back up to the apartment to disconnect the television, DVD player and computer. I was amazed. I still don’t know how she did it, but everything was ready to go, even with the movers arriving 45 minutes early. The move began. Carmen now shifted from packing to un-packing. I headed back down to Dad (and Larry).

A couple hours later, it was time. The room was ready. We hugged Larry goodbye, and Dad and I made our way to the memory center. I don’t know what was going through Dad’s mind. What was going through mine were the images from 55 years ago of a scared little boy being dropped off at Kindergarten for the first time, not wanting to let go of his father’s hand; the images from 35 and 30 years ago of a young man dropping his own sons off at their first days of school…and, them pleading with me not to go.

Carmen had done a wonderful job of getting Dad’s room ready for him. Many of the things that he holds dear were placed around the room. Here and there I could see touches of my mom. I doubt Dad saw any of it that first day. One of the nurses took him by the hand to show him around the facility, while Carmen and I finished a few things. When Dad returned he wanted to lay down. We hugged him…kissed him…and said goodbye.

We spent the drive home recapping the day to each other. Exhausted, emotionally, physically, exhausted. We plopped down on the couch. We had about an hour before dinner. What we wouldn’t do for a power nap. Nope…brains on overload. Instead, we sent a quick update to the sibs, trying as much as possible to keep them in the loop.

We changed and headed out to dinner. Nothing could push the thoughts of Dad out of our minds. It dominated our dinner conversation. Even the French and Dirty martinis couldn’t take the edge off. We ate, taking a bit longer than planned, then rushed to the concert, arriving just a few minutes before show time. We made our way to our seats…very last row, a row with only two seats, tucked way in the back of Orchestra Left.

Neither of us had seen Garfunkel (nor Simon for that matter). The show was a combination of Art singing and telling stories from his sojourn across the United States years before. We loved the format. Art’s voice betrayed his age when he sang, the stories ranged from humorous, to touching, to downright strange.

As the opening strains of the first song, “The Boxer”, filled the hall, Carmen began to cry.

I am just a poor boy
Though my story’s seldom told…

…When I left my home and my family
I was no more than a boy
In the company of strangers
In the quiet of the railway station…

…In the clearing stands a boxer
And a fighter by his trade
And he carries the reminders
Of ev’ry glove that laid him down
Or cut him till he cried out
In his anger and his shame
“I am leaving, I am leaving”
But the fighter still remains…

*Lyrics: Paul Simon; Copyright Universal Music Publishing Group

As he talked and sang, we were barely holding it together. At one point he relayed a story of talking with his father. I wish now I could remember the quote. I have tried to find it online, but to no avail. Something about telling his father, “You were the author of your life, your story set the stage, so I could be the author of mine.” Something like that…I really wish I could remember. What I do remember, is both Carmen and I inhaled audibly when he said it.

Late in the second set, Garfunkel paused, looked at his notes and said, “Ah, the words that change the course of my life forever…”

Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

Using another Scrooged reference, “Niagara Falls, Frankie.” I was now sobbing uncontrollably, my body convulsing….but still singing along….

In restless dreams I walked alone
Narrow streets of cobblestone
‘Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

To my right, Carmen was doing the same, tears streaming down our faces…

And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence

All the emotion from the past week came pouring out. I am sure the people in front of us thought we were nuts…

Fools, said I, you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you
But my words, like silent raindrops fell
And echoed in the wells of silence

Carmen dug tissue from her purse and by the end of the song, we had pulled ourselves together…

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said, the words of the prophets are written on the subway walls
And tenement halls
And whispered in the sounds of silence

*Lyrics: Paul Simon; Copyright Universal Music Publishing Group

Maybe, perhaps, the very last row, a row with only two seats, tucked way in the back of Orchestra Left was exactly where we were supposed to be that night…sitting among the sounds of silence…