For 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”.
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.
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.