The overworked, frazzled mother in line behind us at the market, wiped the damp curls from her temple, grabbed her son by the arm and knelt down to speak directly into his little face, and said, “Grayson, go get your little brother. We’ll be leaving the store soon.”
Robert repeated her words in a high-pitched Minnie Mouse voice and then chortled at his own discovery. Her voice and his poor attempt at imitation was the funniest thing he’d ever heard. He giggled some more and then threw back his head in delight with an open-mouthed guffaw.
I was so flustered. I paid for our groceries, mumbled an apology to the harried mom, “I’m so sorry. My husband has dementia,” and scuttled out the door.
Behaviors unique to FTD
FTD patients exhibit a handful of stereotypic behaviors that are unique to FTD. By 2018, Robert began to repeat what he heard in public (echolalia), even mimicking how the speaker’s voice sounded to him. Each of these incidents embarrassed and further isolated me. I didn’t want to find myself in social situations that might expose Robert’s inappropriate behavior or demand an explanation from me. I didn’t want to name his disease in public.
It’s all in the numbers
An obsession with counting and number manipulation is another stereotypic behavior of FTD. Robert invented the “License Plate Game” which kept him engaged in adding numbers. The game would turn out to be a Godsend to keep moving on walks (find the next parked car!) and it gave us something we could do with him.
In the License Plate Game, we add together all the numerical digits on a license plate. We then add the digits in each answer again until we arrive at a reduced, single-digit answer. For example, using the license plate 6UZN526, we add 6 + 5 + 2 + 6 to reach 19. The number 19 can be further “reduced” to 10 (1 + 9 = 10) which can be further reduced to 1 (1 + 0 = 1). The answer for license plate 6UZN526 is “1.” (I’ve found myself trying to remember the license plate of my own car by backing into the number using the single-digit “answer” from the game. Wow.)
Know the symptoms
Over time I’ve found it useful to have a firm diagnosis for Robert’s disease. I’m better able to understand that some of the things Robert says aren’t coming from some hidden place of anger or impatience, but rather they are the result of the disease process itself. His echolalia (with a healthy underpinning of comedic joy) is a symptom of the disease. His behavior has an explanation.
I now understand that Robert’s outsize love of sugar isn’t the result of a dietary deficiency, but rather it’s a hallmark of FTD.
And his inability to move when he says he’s going to isn’t stubbornness on his part, it’s called apraxia, and it’s another symptom of his disease. His mind wants to move, but he, quite literally, cannot make his muscles follow.
Most days we are still able to play the License Plate Game, three years since its invention. But some days, the game is too difficult for Robert to follow. Sometimes he adds just two numbers on a license plate and must be prompted to include the rest of the numbers in the game. On other days, he counts fence posts outside his window. On the worst days, he counts his fingers. He is going from being an engaged, kinetic person, to a stationary but still outwardly focused human being, to a silent person, who moves his lips to count off his own digits.
Making room for everything else
I share these observations in a matter-of-fact way, as though Robert’s behaviors do not affect me. But they do. I feel victorious when he plays the License Plate Game from beginning to end like we’ve escaped the inevitable…if only for this moment. I am saddened when he counts fence posts. I am heartbroken when he silently counts his fingers.
So why does my telling sound so unemotional? Because I have learned that I cannot live in grief. None of us can. To live in grief would be to give up on life. Living requires that we feel everything. Joy, love, happiness, anger, sadness, heartbreak, contentment, and grief. The truth about grief is that it doesn’t ever go away. We just have to make room for everything else.
Some days are better than others.