Tag Archive for: bvFTD

Just Gene - Rivers of ThoughtFor some, the title of this post will conjure up images of Sean Hayes’ character on the first iteration of Will and Grace, Jack McFarland, throwing both his hands up, palms forward to face-box himself and exclaiming, “Just Jack”. While that moment became iconic in the annals of television, I’d like to share a different moment…a moment I had recently with my dad, Gene. No, face-box, “Just Gene”.

Many of you know, my dad is suffering from a somewhat rare form of dementia: behavioral-variant Frontotemporal Dementia or bvFTD. This evil disease, although in the same family as Alzheimer’s, doesn’t manifest itself in the same way. Dad still recognizes everyone, can recall the minutest detail of something that happened 30 years ago, or 30 minutes ago, and, other than having an 88 year-old body, is in decent physical health. I sometimes describe him as a person with cognitive abilities of a 5 year-old, with the memories of 88 years.

One of the ways in which this disease manifests itself is in the form of delusions. The formal definition according to Dictionary.com is “an idiosyncratic belief or impression that is firmly maintained despite being contradicted by what is generally accepted as reality or rational argument, typically a symptom of mental disorder.” For dad, this means he experiences things around him that are not real, but he firmly believes they are. For example, my mom comes to visit him quite often. Mom passed away five years ago…and he knows this, yet she visited, or they took a trip, or even played golf together. Like a “real memory” he can describe these events in great detail and these details rarely change as he retells the story time and time again.

When he first started experiencing delusions, I would calmly and matter of factly explain to him that they are not real, that he really didn’t go to Chicago last week, or that his ceiling light did not move three feet across the room. As this delusions grew longer, more involved, and more intertwined with reality, his doctors advised us to just go along with the story. Unless he is frightened, endangering himself or others, just go along.

We have had many visits these past few months where he is in midst of a delusion and incorporates us in. On one such visit, he was clearly leading a church meeting. There were twenty people in his room. When we arrived, he interrupted the meeting to introduce us to the group, told us he would be wrapping the meeting up shortly, and then we could visit. As you probably deduced, the room was empty save for me, my wife Carmen, our grandson Jordan, and, of course, dad.

All of which brings us to my story of “Just Gene”. I stopped in to visit with dad a few days ago. When I entered his room, I found him like we find him quite often. Laying on his bed, fully clothed (including shoes), resting. It was about 5:30 in the evening and he had just returned from dinner down the hall. I pulled up his walker, which has a seat as a part of it, and sat down next to the bed for our visit. We talked about his day, we talked about his meal, we talked about his tv not working (uh, I turned the cable box on and wha-la it worked). I changed his clocks, it being the Monday after the fall time change. I crawled on the floor and picked up his phone, knocked there when he had tried to get up at some point in the last few days. We talked about my upcoming trip to LA, we talked about Carmen not feeling well, we talked about little Jordan and Braxton.

“So, Dad, what else have you been doing? Have you been down to activity time?”

“No, I’ve been way too busy.”

“Busy, doing what?”

“Well, I don’t know how these groups find me, but I keep getting asked by these church groups to help them with this problem or that problem. Groups from Chicago, from St. Louis, from all over. I don’t know how they even know who I am.”

“Well, dad, of course they know you. You lead the baptist churches here in Indiana for years. You were a very well respected expert on congregations and church management. Of course, they want insights from the Reverend Doctor.”

“I suppose you are right. But, this last one did not go well.”

“What do you mean?”, I asked.

“They just weren’t getting it. I could not get them to understand. I finally had to give up. I needed to get back here and they just wouldn’t listen.”

“I suppose that would be frustrating, but you had to run into that many times during your career, right?”

“Not often, but sometimes. One of my congregations was especially difficult. It always hurt deeply when I saw them going in the wrong direction, for the wrong reasons. We had a couple of churches leave the Association. They felt that was what was best for them.”

“I have always been proud of being the son of Reverend Ton. I loved to listen to you preach. I loved it when you got into character and acted like you were one of the Apostles, that always got my attention,” I told him. 

“Yes, sometimes you have do something a bit different to get your point across. You just can’t stand up there behind the pulpit week after week. But, you know, here I am not Reverend Ton. Most don’t even know or care. Here I’m just Gene. And, I kind of like that.”

There you have it. Just Gene. And that feels good to him.

I have to admit, it is something I rarely have thought about…the sacrifices. The sacrifices he, and countless others, had to make to follow their calling. The long hours of running the business of a church during the day, rushing home for dinner, only to have to go back to oversee the various meetings of the church at night. The need to always be “on”. Always “special”.

Just Gene.

Dad spoke of missing so much of our lives as kids, instead, having to rely on mom as the primary parent because she was home…and he was not. It occurred to me, even something as simple as visiting someone’s home for dinner, and always being called upon to say the blessing, because, after all, he WAS the Reverend.

Just Gene.

I remembered the times he and I would go to play golf. Invariably, as a twosome, the course would pair us up with another twosome to complete a foursome and off we would go. Dad always introduced himself as Gene. Just Gene. Not Gene Ton, not Reverend Ton, just Gene. After one such round in which we had been paired with a particularly “rowdy” gent, who liked to swear and tell off-color jokes, I asked him why he didn’t tell him who he was or what he did for a living. “Well, because it would make him uncomfortable and he would change the way he was acting. He was here to relax, play golf and blow off steam.”

I have no doubt, knowing my dad, he would do it for the other person. But, the realization was dawning on me, that maybe, just maybe, he was giving himself a break from being the Reverend Doctor Ton. Maybe in some deep recesses of his brain, he needed to be “Just Gene” occasionally. Maybe that is part of the battle going on within his mind today. As the disease takes over more and more of his brain, it is a tug of war between the calling of his lifetime…to lead, to counsel, to challenge, to comfort…and his desire to be…Just Gene.

Sounds of SilenceThey 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…