To know or not to know … ?

by mymothersbrain

Our friends disagreed. Warren was adamant that he would not want to know. His partner, Steve, insisted that “to be forewarned is to be forearmed.”

We were at their house on Sunday watching the HBO Alzheimer’s series when the question came up: knowing all we know about the disease, would any of us choose to undergo testing to see if we carry a genetic disposition toward developing the disease?

I’m not talking about brain imaging or neurological exams that indicate the presence of dementia now, rather, some kind of medical procedure that might tell us whether we carry the precursor, the ticking clock that means a certainty of developing Alzheimer’s at some point in our lives. Well, that possibility may be closer than ever.

If Alcon’s Institute (affiliated with John Hopkins University) and Inverness Medical Innovations, Inc. are correct, they may have, in another year or so, a way to predict Alzheimer’s development in any one of us. That’s the gist of an AP story today; I’m posting the link to one version here:

Still, the questions remains: to know or not to know?

Part of me wants to believe my answer would reside in logic, that I’d like to be fully prepared for what may lie ahead. But part of me has seen way too much of this disease to be logical.

I’ve seen the manifestation of Alzheimer’s in hallucinations, confabulations, paranoias and obsessions.

I’ve cleaned the guest bedroom after my mom has left and found the evidence of her incontinence paranoia: tucked into drawers, between mattress and box spring, under the bed, on the nightstand, anywhere she can reach them easily should she need them, are pads of paper towels and toilet paper that she uses to line her underwear. All of this despite the fact that she wears disposable underwear and she hasn’t had an accident yet! My mother-in-law had the same fears and stocked up on so many sanitary pads that to this day, I still find them hidden behind towels or at the back of bathroom cabinets from the time she lived with us.

When my mother-in-law lived here, I often listened to her complain that we didn’t understand what she was going through. I vowed to be more understanding, to be a better listener, and consequently, when she was sitting on the toilet crying and complaining of chest pains one morning, I called 911. In minutes, there were seven (seven!) men in blue uniform dwarfing my kitchen — firefighters and medics — tending to my mother-in-law. “It’s not her heart, it’s her brain!” I wanted to shout. “What can you do about her brain?” But I tagged along with them to the hospital where she raged about the need for her sanitary pads while doctors tested her and found nothing wrong with her heart.

I’ve seen Alzheimer’s physical ravages, too — the blank stares, the loss of words, the inability to speak. I have fed my mother-in-law now that she cannot feed herself, and know full well that should my mother live long enough, I’ll be doing the same for her.

So, do I want to know if that is how my life will end, assuming that some other disease or accident doesn’t get me first? I still don’t know.