Sunday, January 16, 2005

It’s Still Ticking (Part X)

“I don’t want to be sick.”
Surreal World would have nothing on this conversation. I needed some time to collect my thoughts so I asked Alex, “So did you ever get that water you went after originally?”
“Nope. Never made it that far,” Alex said soberly.
“Why don’t we go get it now?” I suggested.

We got up and headed back down the concourse in the direction that I had gone to search for him earlier. There was a snack bar I had noticed about 50 yards up from our position. When we got there I stood in outside while Alex went to the cooler to get his drink. But rather than selecting a bottle of water, he opted for a Mountain Dew instead, catching my glance with a knowing grin as he selected it from the cooler. Mountain Dew, you see, since its introduction back in the mid-60s was a childhood favorite of us both. It has long been sort of an implied symbol of the “good ‘ol days” for Alex and me; a part of the unspoken code of that special fraternity to which we alone belong.

On the way back we stopped by the check-in counter where Alex had gotten his duplicate boarding pass. I asked him for it and then turned to the lady who had given him such a hard time about it earlier; she still there behind the counter. “Ma’am,” I said, “He’s not going to need this after all. I’m his brother and we’d gotten separated earlier, but I still have his original. We’ll just use that.”
“Oh, all right sir, thank you,” she said smiling and nodded as she tore up the duplicate.
“And by the way,” I leaned in, “He does have Alzheimer’s disease.”
“Oh…" she said with a blank expression, “I’m sorry…” Alex and I turned and proceeded again to our gate’s waiting area.

We again sat down, I tried to measure my words as I sought to ask my brother why. “Why did you insist for all these months that you didn’t have Alzheimer’s?
“Denial, AJ…Nothing but denial,” he said flatly.
“Do you mind talking about this?” I asked, “I really didn’t know how to broach the subject, I didn’t know how to talk to you about it. That’s why I didn’t say anything to you when you got up to go for water. I didn’t want to insult you.”
“Well I guess you should have, huh?” he said with a half-smile. “No, it’s okay. I don’t mind talking about it.”

It was strange. I had a difficult time discerning just how much was actually registering. Some of the things he would say were completely lucid, as though he fully comprehended. Yet other times I wondered if he wasn’t just throwing something out there just to sound normal.

I asked him about this trip to Indianapolis, “Do you know why we’re actually on this trip Alex?”
“I know we’re going to see Dr. Farlow,” he said, “That’s about it.”
“Actually,” I explained, “What we’re doing is going to see if they can confirm that you do have Alzheimer’s, and maybe get you some treatment. Did you know that they have drugs out now that can slow down the progress of the disease?”
“No, no I didn’t,” He said intently. “Think they can help?”
“I sure hope so, bro. I sure hope so,” I replied. “Of course there’s still no cure, but they’ve found these new drugs can significantly slow it down; to help you keep what you have maybe a bit longer.”
“Yeah, that would be good,” He smiled

After a brief pause, I continued. “Man, not to be voyeuristic or anything, but how do you feel? How long has it been that you’ve known something wasn’t right?”
“‘Bout a year,” he said, looking up, “Maybe a year and a half.”
“And you really thought it was just depression?”
“We were hoping it was,” he whispered.

Alex stared at the ground, his hands clasped together, resting between his knees. Tears began welling up in his eyes as he gazed at me intently and said, “I don’t want to be sick.” I reached around to hug his neck, “I don’t want you to be either, buddy. Oh how I don’t want you to be!” We sat huddled together, sobbing silently.

After a brief embrace, we took a couple of deep breaths and quickly composed ourselves. Suddenly Alex turned to me with an inquisitive look. “So tell me, how did you arrange all of this,” he asked.

I briefly recounted the string of events leading up to that point; from our concern about him months earlier, to the contact with Dr. Farlow and my subsequent discussion with his wife Saraph. I mentioned her reluctance to let him go before hearing the final diagnosis from his local doctors, and then after doing so, how she and I worked out the details with IU Medical Center to make it happen. It was at this point in the exchange that Alex seemed to get sidetracked. I now in retrospect wonder how many more of the details I delivered he actually comprehended.

Maybe it was too much information. Maybe the realization that other people were making his decisions for him didn’t sit well. But he seemed to latch onto that single thread of our conversation and dwelt upon it. It would be a subject that illustrates his mental disposition as well as anything that I would hear from him our entire three days together. It would serve as one of the quintessential examples of the nature of AD’s effect on its victims: the inability to filter one’s thoughts; being unable to block out one thought while experiencing similar difficulty in concentrating on another.

As I was recounting how I had spoken to Saraph about the local doctor’s diagnosis and then of our making the travel plans to get him and me to Indy, he interrupted, saying, “So…you talked to Mom?” At first I didn’t quite understand whom he meant. I replied, “Well, I talked to Saraph…your wife…”
“Yeah…that’s what I meant,” he quickly interjected.

I continued my explanation and a few seconds later he did it again. “So you talked to Mom. I…had no idea. She never told me.” My heart sank as it dawned on me that he indeed understood who I was talking about, and now in this regressing mental state, be it or not some kind of Freudian circumstance, actually thinks of Saraph as “Mom,” just like the children with whom he now spends the majority of his waking hours. Yet at the same time his apparent fixation on this notion bore the appearance of an expression of sober surprise; as that of a man who has lost control over his own life, and the realization has just now sunk in.

I reassured him that we weren’t tying to sneak around, but that Saraph was the person who wolud have to make it happen; to make the arrangements in her schedule to allow him to go. But I could tell that it bugged him. He would rhetorically repeat the same question, “So you talked to Mom, huh,” at least a half-dozen times over the course of our time together, often completely out of the context of current conversation.

Soon it was time to board the plane to proceed on to Indianapolis. As we prepared to get in line Alex turned to me and said, “AJ…I love you so much. Thank you for trying to help me like this.”

If ever someone needed confirmation of the reason for his or her very existence, well that was mine right there.

The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother

So on we go
His welfare is of my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me
He ain't heavy, he's my brother

If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another

It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother

How ironic it is, the dozens and dozens of times over the past 35 years that I have heard this song and thought about its lyrics, that I had never applied them to my own flesh and blood. But now for the rest of my life, that will be its only context.

Next: Psyched Out
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