In my blog post Good News For Ralph, I expressed my relief that easily rectified vitamin deficiencies were the cause of his mental confusion and strange behavior. Seems that might have been overly optimistic.
Although I haven’t written extensively about it, over the past several weeks the disturbing behavioral patterns have intensified after what appeared to be a brief reprieve. In addition to short-term memory problems and an inability to recall how to do the simplest tasks like turning on the washer, Ralph has been exhibiting a strange olfactory phenomenon. His sense of smell is not only acute but malfunctioning. For example, the AXE products he once loved, he now complains smell bad and refuses to use. Recently when I picked him up at the movie theater, he reported that the theater smelled so bad he reported it to the manager. And he’s stated many times that he can’t stand the smell of his sheets.
Something is most definitely wrong and I fear it goes far beyond any lingering B12 vitamin deficiency. Worse, Ralph knows it too.
Today we shared a heart-breaking moment when I noticed he’d been crying and asked what was wrong — a typical occurrence of late, which usually results in protestations that he’s “fine”, no matter how patiently and persistently I try to pry it out of him. This afternoon was different. As I held him close he cried “I just want to be myself again”, “I want my life back” and “I want my memory back.” And the entire time it was killing me inside to know that he’s aware that something is terribly, awfully amiss. If there’s a downside to Ralph being such a high-functioning human who happens to have Down syndrome, it’s that he’s sharp enough to realize he may potentially have a very serious physiological problem.
It’s hard to describe how much this interlude made my heart ache. Especially after I had a chance to do some research on smell disorders and discovered they can be an early sign of Alzheimer’s disease.
The thought of this beautiful person having to endure such a horrific, mind-ravaging and debilitating disorder completely overwhelms me with sorrow and yes, anger. It’s not that I don’t have sympathy for “normal” people who become afflicted with Alzheimer’s; it’s just that when I look back upon everything Ralph has had to endure — from initially being written off by a misguided (to put it nicely) doctor to having to work harder to compensate for having an extra chromosome to losing his hair to alopecia at 17 — I’d like to think he’s paid his dues and deserves some sort of dignified end to his life. Not some inescapable nightmare that robs him of cherished memories, makes him feel all alone and obliterates his ability to recognize and take comfort in those who love him.
And yet, there’s a very real possibility that that is exactly what lies ahead.
We will know for sure next Tuesday when we take him to see a specialist. In the meantime, if you could keep Ralph — and the rest of us — in your prayers, I would really appreciate it. We’re going to need all the help we can get.