Monday, December 27, 2004

It’s Still Ticking (Part V)

A Golden Boy tarnished
The family curse would be been cruel enough for just being in existence, but it almost seems as though it actually has some sort of dastardly purpose in its selection of whom it claims. I’m sure there’s no scientific basis for it, but in almost every case, the members of my family to whom the AD gene has been passed have been among the best and brightest from their respective branch of the family tree. That serves to make the sorrow even more bitter; the losses even more steep.

In the case of my immediate family, the shock of learning that Alex carried the dreaded AD gene has been by far the bitterest pill of all for me to swallow. This is particularly so in light of the fact that we had previously believed that we were all cleared. Sadly for Alex, what we had assumed was a clean slate turned out in fact to be one that was impossibly soiled.

I’m not ready to eulogize my brother just yet. While he will never be the same, he certainly has a lot more life to live, and I really need to keep that fact in mind. Since our return from Indianapolis in November, he has been able to get on some of the new Alzheimer’s drugs that Dr. Farlow had touted to me earlier. So far he’s doing well. Hopefully he’ll stabilize and be able to keep what he has for a number of years longer than otherwise normal for an EOAD sufferer.

However the difference between the person I had last seen in the Fall of 2002 and the one I spent three days with last month were as different as night and day. Our family’s golden boy, once so brilliant and gleaming, was now tarnished and lackluster. I knew going in that he would be different; I just didn’t realize how much so.

Alex has lived in Dallas for the better part of the last twelve years with his wife and three children. Until his recent difficulties over the last couple of years he was a successful attorney, working for a large and prestigious international law firm. In 1999 he accepted the invitation to become corporate counsel for a new business interest of our entrepreneur-brother, TK. It was following this stint that he began having difficulty holding down subsequent jobs. And while it would be easy to immediately blame Alzheimer’s for all of his problems, I’m still uncertain as to exactly when his onset truly became a contributing factor.

Regardless of the exact starting point of Alex’s illness, his demise was so well masked by its own imposing improbability that no one could believe that it could be anything but just a run of bad luck. It just didn’t seem possible that performance could have had anything to do with his unlikely fall from grace. He went through three law firm jobs in two years, and left everyone in the family scratching their heads, muttering, “What’s UP with him anyway?”

After all, this was the golden boy; the star of the family; the one who was second in his class in law school and had interned for U.S. Supreme Court Justices Sandra Day O’Connor and Antonin Scalia. Alex quickly became a star for his law firm, registering high marks for his work defending their client American Airlines in a landmark anti-trust defense in the early 90s. He seemed to be on a track for success that the rest of us could only dream of attaining. He was the one for whom everyone’s chest swelled with pride. Everyone bragged on Alex. He made us all feel like superstars. He made us all feel invincible.

But now his rising star had begun to fall, and nobody could figure out why.

AJ & Alex: The Lost Years
The years 2001 to 2004 were sort of the “lost years” in my relationship with my brother. In August, 2002 Michelle and I saw him briefly on our way back from moving our daughter Amy to her freshman dorms at Abilene Christian University in Abilene, TX (she subsequently transferred to UT Chattanooga the following year, much to the delight of our bank account). That would be the last time I’d see him until this trip.

The two years prior to and after that last visit, I’d had little to no communication with him. What few phone calls there were almost exclusively came from me to him — it was almost never the other way around.

It was so frustrating. This brother with whom I had always been so close, and with whom I routinely had at least one phone conversation per month with, no longer returned my calls. As time went on, it became increasingly rare for anyone at his house to pick up the phone at all. All incoming calls were screened. Unbeknown to us, the bill collectors were even more interested in talking with my brother than I was.

It was during this time of non-communication that I sadly began to believe that my brother was hiding behind an impenetrable wall of pride. I found my own heart growing more and more calloused to the struggles that everyone knew he and his family were experiencing, yet was refusing to talk about or even admit to. In hindsight I’m having a hard time forgiving myself for that attitude, because I can’t help but think that if I had fought a little harder to break through, I could have done something…anything to bring the true culprit for Alex’s personal calamity to light. However, the reality I now have to remind myself of is that you can’t help someone who doesn’t want it. Nonetheless, that doesn't excuse the fact that I hardened my heart against my beloved little brother when I should have been loving and encouraging him all the more.

But I guess I’m just human, and one can only receive the cold shoulder so many times before you just have to say, “screw it.” And while I feel horrible about it now, I felt just as bad about Alex’s seeming unwillingness to confide in me as I had in him for so many years; the years when I was the one constantly in financial straits and he was living the good life. Perhaps that role reversal was more than he wanted to deal with, and in hindsight I can understand that. But even when we did talk over the course of the past three years, he never would admit to there being any money problems despite common knowledge to the contrary throughout the family.

But whether it was pride, confusion or shame that caused Alex to close himself off from us makes little difference now. There’s no room for hard feelings or regret. The time that we have left with him is scarce. Making the most of it is now all that matters.

Of course hindsight is 20/20, but turning back the clock a few months, the entire picture was still pretty murky. The unintentional smokescreens being thrown out by Alex and his wife, beginning in the Fall of 2003, cast just enough light on the subject that it was actually possible to both discount AD as the cause and provide hope that Alex could actually recover. From the beginning, we were assured that there was no cause for alarm and that the doctors had everything under control.

As I wrote briefly of here, he first he was diagnosed with sleep apnea, which under severe enough conditions can cause denentia-like symptoms. Coupled with the sleep apnea, local doctors also gave a preliminary diagnosis of severe depression, both causing and explaining Alex’s inability to hold down a job.

That was their story and they were sticking to it, so that’s what I believed. I couldn’t allow myself to believe anything else. However there were others in the family who weren’t so easily convinced, and one sister-in-law, by her insistence that she believed that there could be something more than sleep apnea responsible for Alex’s remarkable demise, set into motion a series of events, culminating in Alex and my trip to Indianapolis.

Marnie on a mission
It began last June when my eldest brother Jack had pre-emptive heart bypass surgery to head off what doctors informed him was an inevitable heart attack. Fortunately, he came through his triple-bypass procedure with flying colors. When Jack came out of surgery that evening, his wife Marnie began calling the family to give us the good news that Jack was going to be fine.

When she called, after giving me the progress report on Jack, Marnie mentioned that she had spoken to Alex prior to calling me. Nothing was spoken of regarding his own health, but she indicated that she was fairly troubled with what she’d heard in his voice.

“AJ, Um, have you talked to Alex lately?” She asked, with a tone of heavy concern. “Yes, as a matter of fact, a couple weeks ago on his birthday. Why?”

Now I knew what she was going to say, or at least I thought I did. The conversation I’d had with Alex just a matter of two weeks prior was still fresh in my mind. He had told me how the doctors were still trying to find out for sure what was going on, but that when he remembered to take his meds that everything was copacetic. He admitted to the fact that, yes, he sometimes had trouble expressing himself verbally, and that was why he would sometimes pause and lose his train of thought, but that was due to the medications he was on.

It was a convincing argument, and I bought it. However Marnie hadn’t heard the explanation, so naturally her initial reaction was one of alarm at the marked difference in the way he sounded over the phone. Up to that point I didn’t really know how much, if anything, Alex had told Jack and Marnie, who they rarely communicated with, but I felt that I should try assuage the concern I heard in her voice.

“AJ, she said, “He sounded really strange! I’ve never heard him like that. He was stammering…taking long pauses between saying things…losing his train of thought…”

“He sounded like he has Alzheimer’s disease.”

“No, no, no, Marnie,” I assured. “He doesn’t have Alzheimer’s, but he is having problems. He explained it all to me a couple weeks ago…” And I proceeded to then explain the sleep apnea and depression angle as Alex had sold it to me when he was first preliminarily diagnosed in the Fall of 2003, and then again when I spoke to him in May. I assured my sister-in-law that while he indeed wasn’t well, he was being treated and that his doctors were confident in bringing him back to health.

Marnie didn’t seem convinced, but accepted my explanation. And after a few more minutes of chitchat, I thanked her for the update on Jack, and we said goodnight. I still believed that Alex was, as he had told me, “going to be alright,” but Marnie’s alarm began to, for the first time, set off a few bells in my own mind. It was the first time I had actually heard someone mention AD and my brother’s condition in the same sentence. However I steadfastly remained optimistic and quickly put those ‘what-if’ thoughts as far out of my mind as I could.

However, Marnie was unwilling to let it go. Several weeks later when her husband was back on his feet, she and Jack contacted my Dad and one thing led to another. Within a matter of weeks there was cross-involvement with nearly everyone in my immediate family, including my older brother TK, who I rarely get to see, as he splits time between Pasadena, California and Taiwan, where his wife and children now live.

I still just wanted to believe that it was all somehow a coincidence, but now the grim realization was beginning to seep in.

My Dad called Alex often, but rarely would my brother pick up the phone. In August, on Alex and Saraph’s 25th wedding anniversary Dad called to wish them congratulations on the landmark occasion. When he told me later that Alex was unaware that the day even was his anniversary, I think I finally knew. But did Alex? On more than one occasion when talking to Dad, he would offer him reassurance, “Dad, I had a CAT scan — it came up clean! I DON’T have Alzheimer’s!” Unfortunately, my brother didn’t know that CAT scans are not always detailed enough to be able to accurately report the cerebral damage that AD causes. So whether or not Alex actually believed his own assessment, his point was moot.

More phone calls ensued. My stepsister, who was extremely concerned, and I spoke for hours on the phone about the dilemma we faced as the ‘meddling family.’ It was obvious that Saraph, who by now was completely supporting the family and making all decisions regarding her husband’s care, was operating in “siege mode.” She was doing what she felt she could do in working with the doctors who continued to insist that Alex’s problems were borne of depression, and not Alzheimer’s.

Unfortunately at that point we didn’t know the full story of what was going on with regard to Alex’s medical situation, so it made it that much harder to feel at ease; although when we finally did learn about it, it made me feel even less so.

Next: My Brother’s Keeper
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