Monday, December 27, 2004

It’s Still Ticking (Part VI)

My Brother’s Keeper
Given that I am four years older than my brother Alex, and that we two are the youngest amongst the five brothers in my family, a significant part of my life has been devoted to looking after my little brother. I can’t remember it ever being a bother. In fact, for the majority of our childhood, we were inseparable. I don’t remember not wanting him around. We always hung out together. My Dad tells me, although I really don’t remember much of it, that I was the one who taught Alex to read, or at least encouraged him in that direction. We spent hours on end in the living room browsing our set of World Book Encyclopedias together. I do remember showing him how to use World Book’s companion “CycloTeacher” teaching aide. He took to that thing like a duck to water. By the time he was in First Grade, he could recite the entire list of U.S. Presidents from Washington to Nixon forwards and backwards.

I really can’t say when it was that I stopped believing in Santa Claus, but I’m sure that I kept Alex believing at least until he was in the fourth grade. I had him convinced that I had a direct telepathic connection with ol’ Saint Nick, and that I could — and would — rat him out for being bad if he didn’t do what I said. I know, I know…cruel, right? Don’t worry, it was always good-natured. I may have abused my powers occasionally, but I rarely mistreated my little brother. I always loved him and appreciated him for who he was: my friend. I always treated him as an equal. We played together as if we were the same age…except that when we played basketball, for a change, there was always somebody I could actually beat.

My senior year in High School, when I won the State Gymnastics Championship (C.I.F., Southern Section) on the Rings, my Dad and Maxine were in Hawaii celebrating their fifth wedding anniversary, but Alex was there. He was always my biggest fan and always traveled with the team to all my meets. But his presence this night I’ll never forget. After I’d won, from the stands he sprinted across the gym floor and leapt into my arms to congratulate me.

As young adults we double-dated, road-tripped and partied together. We got married the same year; raised our families together; bore our souls to one another.

So there was never any question about who would accompany Alex to Indianapolis. There was never any question in my mind as to whether or not I should. From the moment the opportunity presented itself, I knew that it was the sole purpose for my existence on earth at that moment in time.

However the way the opportunity came about was as unexpected as it was interesting. It required a rare, concerted effort from my family, with each member playing a role.

I’ve mentioned it before, here in my blog, that my wife marvels at the fact that as much as we all seem to like each other, my family communicates less than some mortal enemies. We rarely call each other; we forget birthdays and anniversaries. Nonetheless there are never any hurt feelings. We just know that we love and are loved by each other. Almost never has there been an issue or program that we’ve all interactively participated in. I guess it’s no surprise then, that it took an in-law, someone “outside” the family to set this odyssey in motion.

I mentioned in the previous installment, that my sister-in-law Marnie (Jack’s wife), is the person I credit with getting the ball rolling. She and Jack escalated their concerns about Alex to my Dad. At about the same time my stepsister Janice also became concerned with what she had heard in speaking with Alex on the phone and she contacted me as well.

Janice and I began exchanging e-mails and phone calls to discuss the situation. As always, I attempted to explain it all in the same context, as I understood it from Alex, continuing to turn a blind eye to the obvious truth that was staring everyone else in the face. However the back-channel communication continued, in, around, and in spite of my more-than-willing naivete.

How ironic it is that all during this same time of late summer, 2004, I had been writing in this blog about my family’s history in battling Alzheimer’s. I devoted three multi-part series to chronicling the successful role we all played in the research to locate the disease’s genetic marker, through which a test for diagnosing a person's proclivity to developing AD was developed.

I expressed the relief we all felt in believing that we had all, less my second-eldest brother David, escaped the family curse. Yet behind the scenes all throughout that same time period, these suspicions were swirling within my family about Alex. Finally, no more than two months after triumphantly declaring in this space that we had all beat the rap, the devastating realization began to set in that Alex most likely had not.

A deadening sense of dread began to settle over me. It affected my writing. It robbed me of my ambition. I just wanted to run away and hide.

In the midst of all of this, on a Saturday afternoon in mid-September, my brother TK called me out of the blue to talk about something else, but of course the conversation soon drifted to the subject of Alex. It was then that TK told me of the apparent first signs of Alex’s “difficulties” he witnessed when they worked together back in 2000. I’m inclined to believe that what he said was indeed the beginning of Alex’s AD onset, but who could have known; who could have really seen it even then?

More discussion with Janice and Dad followed, and I decided that I couldn’t stand by and wait any longer. I had to see him to see exactly what Alex’s condition was for myself. The not knowing was killing me.

In late September, I called Alex and told him that we all loved him and that our concerns were genuine, but that the difficulty we’d had communicating with him were making those concerns multiply. The conversation was warm, but I was devastated at what I was hearing. For it was the same thing that Marnie had expressed concern about three months earlier: the pauses; the listlessness; the lapses in thought. Alex gave me the same assurances that he had given Dad and doubtless, anyone else who would listen, “I don’t know exactly what’s wrong with me, but it’s not Alzheimer’s. I’m gonna be okay.”

I asked if he wouldn’t mind my coming down to spend a few days with him, and he responded enthusiastically. I said that I would try to make it sometime within the next month, depending on my project load at work. He said that would be great and that’s where we left it. I hung up the phone and broke down in tears. I felt so helpless. I would do what I could do to go and see my brother, assess the situation — but then what? How could I help him if he didn’t want help?

Was I over-reacting? Was I reaching too far? I was absolutely torn up inside.

The next day I called my Dad and stepsister to tell them of my conversation with Alex and my plans to go visit him in October. Dad related this to TK and that’s when the wheels really began to turn. TK contacted Dr. Farlow at Indiana University Medical Center, who expressed a significant interest in seeing Alex. He said that because of the relationship of our family to the research program of which so many of our family had been a part throughout the years, he would be happy to examine Alex and get him whatever help he could. TK, knowing that neither Alex nor I could very well afford such a jaunt, asked Dr. Farlow if he’d authorize IU to pay the travel expenses and he happily agreed.

The next step, of course, was to inform me! It was surreal at how much a whirlwind experience that conversation was! My Dad and TK conference-called to offer me the plan, which would completely re-vamp my previous course of action. Instead of going down to Dallas to spend a few days with Alex, I’d be going there to pick him up, fly with him to IU, have him checked out, and then fly him back home.

Not that I would have, but how could I refuse? This was exactly what needed to be done, and I immediately recognized it as my destiny and purpose. Everyone knew that I was the only one who could convince Alex’s wife Saraph to go along with such a plan. It had never appeared that she really much cared for anyone else in my family, but no doubt because of my close relationship with Alex, she and I had always gotten along well.

The world as she knew it had collapsed a year earlier with her local doctors’ recommendation that Alex be considered permanently disabled, so certainly no one could blame Saraph for circling the wagons. This woman, with a MENSA I.Q. but no college degree was thrust into the position of breadwinner for a family of five accustomed to operating on a six-figure income. She took on three concurrent part-time jobs, because no one would hire her full-time for more than minimum wage. She was additionally forced to do the lion’s share of the work required to scale down their lifestyle, including the sale of the big home that they could no longer afford, in favor of a one with a more modest mortgage.

Of course, the details of the hell that was now her life weren’t exactly being shouted from the rooftops toward our inclining ears. Saraph was working her ass off to keep her family’s head above water. She neither had the inclination nor the time to notify Alex’s family of her struggles. She didn’t want our family’s help and didn’t need our sympathy. She had all the support she needed through their local circle of friends in Dallas.

However it’s not fair to lay the blame at her feet for the lack of communication. I would learn in talking to her that because of her insane work schedule, she simply wasn’t home all that much. And most of the time, if someone would call, and Alex would pick up the phone, but forget to write down the message, or even tell her that someone had called.

Fortunately, she did receive the voicemail message that I left on Sunday night, October 17th. I told her of Dr. Farlow’s generous offer, and that I really needed to speak to her. She called me back early the next morning, but her demeanor was less cooperative than I’d hoped.

She explained to me that her original inclination was to believe that her husband indeed did have Alzheimer’s disease, but that she was convinced otherwise by the psychiatrist who was treating Alex at the time. He made the quite plausible argument that it was the cumulative effects of the sleep apnea, exacerbated by severe depression causing Alex’s problems. The good news they thought, was that it was fully treatable and quite possibly reversible. Alex might even be able to one day resume his career as an attorney.

No wonder she almost casually dismissed Dr. Farlow’s offer. “No, not really AJ,” she replied, when I asked if she would want to explore getting a second opinion at IU. “I’m not really all that impressed by Dr. Farlow, y’know? I’ve done a little research on Alzheimer’s myself and I never see his name mentioned. I’m sorry, but I’m just not convinced that he’s all that great,” she added matter-of-factly.

She continued, “What no one on the outside realizes is that I’ve been working with a whole group of doctors for over a year. I haven’t been sitting on my hands. No, I haven’t been talking to the family about it a lot, but that doesn’t mean we haven’t been trying to get something done. We’ve got some pretty good doctors down here in Dallas, you know. Besides, I’m supposed to get the final diagnosis back from them in 10 days, on October 27th.”

I tried to counter by reminding her that there are a lot of doctors working with AD patients, but not many with the expertise and background on the type that effects our family. I related the information that Dr. Farlow’s comments to my Dad in a conversation last summer regarding the strides being made with the new AD medications that are now available, and how they had proved so successful in slowing down the progress of the disease. I emphasized that because of our family’s rapidly-advancing AD strain, time was of the essence in placing Alex in the best position possible to retain what faculties he still has.

“I mean, wouldn’t you want to know for sure, from the experts?” I asked.

“Oh, you mean the ‘experts’ who told you guys that you weren’t going to get Alzheimer’s? C’mon now AJ…” she said with a sarcastic chuckle.

Of course I had no comeback. This was long before I had realized the error that we all made in judging the research, which we thought placed us in the clear. I felt my stomach tighten. I swallowed hard and reminded myself all that this woman has been through. I couldn’t allow myself to take her comment as a personal insult.

I asked her to at least to consider it, after all, it wasn’t going to cost her anything, and that’s certainly something she couldn’t say about the group she was working with there. She agreed, but only pending the final diagnosis by the local doctors; she would do nothing prior to that. She told me she would call me on either the 27th or 28th, depending on what time of day she actually got the results.

Additionally, while her rather defensive posture didn’t bode well for the likelihood that this trip would actually happen, I did ask, if the results ruled out the possibility of AD in her mind, could I still come to visit Alex for a few days as I had originally planned. She said, “Of course, that would be great!” So I knew at least that she wasn’t mad at me. She was just, quite simply, confident of the preliminary diagnosis that her local doctors had given.

It would prove to be a confidence misplaced.

Next: My brother’s keeper (continued)
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