Sunday, December 02, 2007

Two Tales of One City...or Somethin’ Like That (Part V)

The Long Goodbye — First Movement: Allegro
To begin, let’s back up a bit; like, say, three years ago this month. If you’ve read the series I wrote about this and the circumstances surrounding the discovery of Alex’s tragic victimization by the family curse, you already know the back-story.

The Alzheimer’s research team at Indiana University Medical Center, who had been working closely with my family since my Mom’s AD diagnosis, had agreed to run tests to determine Alex’s medical disposition and find if indeed it was AD that was causing his rapid mental and physical decline.

I flew down to Dallas to pick my brother up, continuing on to Indianapolis, where together we submitted to two days of psychological and physical testing. I had been asked to partake in the same battery of tests as a control subject for comparison with Alex’s results. But inside I was wondering if I too could still be subject to a more latent AD onset, as was my maternal Grandfather, the portal of the disease’s introduction into the family gene pool. Whereas every affected male in the family has displayed an age onset consistent with Alex’s (i.e.: early 40s), our Grandfather’s was much later, lasting well into his late forties before his death at age 53.

In November 2004 I was 48, so I figured I still wasn’t out of the woods. I wanted to help the diagnostic effort for Alex’s sake how ever I could, but I too wanted to leave the door open to find out for myself, if I too carried the genetic mutation.

As of the time of this writing I’ve still never applied for those test results, now three years later. Fortunately at this point I am (as far as I can tell) still symptom-free, unless of course you want to count the natural absent-minded tendencies that I’ve displayed since childhood.

It appears as though I’ve lucked out. However the determination for Alex at that point appeared to be pretty much the confirmation of a foregone conclusion.

It was nevertheless our first purpose to definitively evaluate Alex’s condition, determining for certain that it was indeed Alzheimer’s, and then go from there. We hoped that in making the determination then that we could catch it early enough to allow the staff at IU to possibly help him — if not to get better — then at least to hold on to what he had for as long as possible.

And now, in looking back on the three separate instances I’ve had to observe him, I’ve seen a clear pattern of decay in his mental state. It’s almost remarkable as I scan the notes I made from that first trip following indy, how much better he seemed and how hopeful we were that his progress would be indefinite.

By late 2004 my brother was still conversational — more so at some times than others — and it was hoped that the new drugs he was prescribed would extend his remaining cogent years by a considerable margin.

The following year was mostly upbeat in its outlook for Alex, but we were nevertheless realistic; we knew that at best, the new drugs were merely postponing the inevitable, but for how long? At what point and how dramatically would he begin to regress?

Naturally I wanted to see him as much as was feasible, to spend as much time with him as I could while that borrowed time was still ours. But my desire to see my brother paled in comparison to that of my Dad’s.

Immediately following my return from Indy, while reporting to him the details of that momentous three-day trip, our Pop was inquiring as to when he and I could return to Dallas together to spend some time with his youngest son. I certainly expected it but I couldn’t have even anticipated how much he would depend upon me to make the arrangements. I guess I had always just assumed that because he was my Dad that he would do what he wanted to do and take care of what needed to be taken care of.

I was honored to help my Father in this way. I planned the trip, purchased the airline tickets, and reserved the car and hotel. The first trip was set for February of 2005. We decided that it would be best for all involved to make the visit short and sweet; fly in, spend a couple days with Alex and see the kids (who would still be in school during the day), and then return home with as little disruption to Alex’s family’s routine as possible.

My sister-in-law, Seraph has completely had her life turned upside-down; there are no words that can accurately describe just how emotionally wrenching this entire circumstance has been for her. And there’s no amount of praise I can heap upon her to accurately describe the respect I have for how she’s dealt with the incredibly harsh hand issued to her.

I touched upon it a bit in the original series, but something that I became keenly aware of was just what an incredible change that Alex’s condition wrought in the family as a whole, not just in my brother’s life.

Alex was the sole breadwinner. He was a successful attorney in a prestigious international law firm. His wife devoted all of her energies into managing their home and raising their three incredibly bright and vibrant children.

Seraph is a brilliant woman, make no bones about it. She has a MENSA IQ, but never went to college, as she and Alex married just a year out of graduating high school. She forewent any career aspirations that she may have had to be a devoted mother and wife to her husband’s rising star in the legal world. It was a choice they made together and one she never doubted or for which she ever expressed regret.

But now, she was being thrown headlong into a world for which she’d never dreamed she would need to prepare herself. My number one concern in planning this visit was for it to have as little impact on the routine of the family involved as possible.

Given that he’d be traveling halfway across the country, my Dad made the trip a nearly all-inclusive national tour to see his boys. We made the arrangements to have him fly one-way from his home in California to Indianapolis, where he would spend the prior weekend with my eldest brother Jack, who then drove him down to Nashville to our house on Monday. The next morning we would depart from Nashville and proceed on down to Dallas.

We flew into Love Field on Tuesday, February 1st, and after dealing with the realization that Pop had left his suitcase at our house (he would have Michelle ship some essential articles of clothing overnight the next day — more on that later), we found ourselves walking up to the front door of Alex and Seraph’s home late that afternoon.

I was pretty encouraged to see Alex’s reaction to our arrival. As opposed to the tentative, almost apprehensive lack of emotion he displayed at initially seeing me three months earlier, this time his face was full of joy to see us. He hugged his Dad for what seemed like five minutes as Pop returned the favor. He seemed so much more animated then when I had seen him last. He wasn’t the ‘old Alex’ by a long shot, but he was considerably closer to that standard than the person I’d accompanied to Indianapolis.

We exchanged small talk and everything seemed wonderful. Seraph was happy to see us and caught us up on what the doctors were saying and the remaining peripheral health issues her husband was dealing with. We talked about all the medications he was taking to deal with everything from Alzheimer’s to the ‘myclonic jerks’ (a mild form of epileptic seizure) he still experienced in his sleep.

We discussed the routine that was such an important part of Alex’s life, and how much his change in disposition was a result of being in his home and in a familiar space.

And as he always had been, my brother still knew how to get a laugh.

I exclaimed to Alex just how much better he looked and sounded. I was just so happy for him and the fact that the medication was obviously working so well.

“Well, I take like eight pills, y’know,” he replied.

Pop chimed in, “Well, I am too, Alex.”

“Yeah, but I’m not as old as you are…” my brother deadpanned.

Open-ended agreement
There was really no activity agenda planned for this trip. We were gonna play it by ear, not knowing whether or how much Alex would be up for doing anything away from his familiar home surroundings.

Seraph had taken the liberty to print out some information from the Web on Dealey Plaza in downtown Dallas, site of the JFK assassination. She thought it might be a good diversion for the three of us. I thought that was an excellent idea and we decided that would be tomorrow’s primary activity.

But for now we would just hang. Seraph prepared dinner and we had an enjoyable evening together catching up and trying to be as normal around Alex as we could be. For despite the fact that our spirits were buoyed by his apparent improvement, the sad realization remained that each passing moment from that point on was the best it would ever get. Alex would have some days that were better than others, but his descent had merely been slowed, not stopped. We would likely have him for years longer than could have been otherwise expected, but we would never have him back.

It was a tough balancing act to negotiate those two emotions for me, and I know it was excruciating for my Dad.

Next: The Long Goodbye — First Movement (continued):
Such a Deal(y)
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