18 months later: physically healthy -- but my how that neuropsychological test was accurate

My Dad amiably answered the doctor's questions, even though the answers he provided were wrong. When asked to extend his arms, or draw shapes on paper, my Dad complied.

On the sidelines of the exam room in this geriatric psychiatrist's office in October 2008 at a medical center in downtown Dallas, I watched my Dad fail what I have since learned was a neuropsychological test. My Mom sat on my right. My then 10-year-old son sat on my left, and we all watched quietly. We encouraged husband/Dad/Grandpa with reassuring smiles and nods. But we all recognized he was not doing well.

My son stayed with his Grandpa in a waiting room while the doctor gave his assessment. It was most clearly frontotemporal dementia. He explained what that is. He mentioned some signs of Parkinson's disease, too. He told us Dad would likely live from 18 months to 3 years.

Which kind of knocked the wind out of us.

Physically, my Dad is so healthy. He was then, and he remains so now, 18 months later.

It would be easy--indeed, it was tempting--to dismiss the psychiatrist and the oddball "test" my Dad had "failed." But the doctor spoke with confidence about signs and symptoms we had not recognized previously. We still think back on things Dad said or did and wonder...was that the beginning of his decline? should that have signaled us that something was wrong with his brain? That gaze in his eyes? The appointments he showed up for a day early? The trouble he had hearing--or was it his comprehension that was off?

I asked the psychiatrist what would kill my Dad. He has this fatal disease, for which there is no treatment, but I wondered what would finally take my father down. Would his heart just stop? Would he just lapse into a coma?

The doctor explained that many people with FTD die after falls, or by choking on food, or by an out-of-control infection. They become incontinent. They forget how to swallow. It was both disconcerting and comforting to hear from a professional what lay ahead. My own subsequent research backed up every word.

So here we are, 18 months later. Dad very distinctly has that Parkison's gait. On most days, he is unaware of his loved ones, and I doubt that any pictures or memory cards I have sent him make any sense to him anymore--or that he can find them. I bet he still has his sweet tooth, but maybe not, (since some dementias steal taste, too.)

He used to fight the caregivers who tried to undress him for showers; now several of the female residents are on his arm. When we visited him once at Silverado where he lives now, Dad emphatically pointed out baboons in the trees outside his window. Since he managed a wildlife amusement park for several years, this "delusion" made sense. Sometimes I wonder if he still sees them. Or if FTD has replaced those delusions with others. He's also incontinent, a progression that adds $500 to the monthly bill.

And even though all of this was predicted by the doctor, even though we watched "Away From Her" and read Lisa Genova's "Still Alice," even though we prepared ourselves in the best ways possible.... sometimes I want to go back in time to that exam room and hear the doctor blame my Dad's confusion on his hearing, or a brain tumor. Something that could be fixed. Or if not fixed, treated. Or if not treated, immediately fatal. Anything but this lengthy deterioration that seems to be playing out just as the doctor predicted.