What’s the word?

My father has lost his words.  They have fallen out of his brain, all meaning sifted out.  Left is the dross, the building blocks of words stripped of their meanings, sounds, almost words: Ginnnggg, wishta washtra waaah, burnfurgr shtupf, gaaaaaaah!.  My father sounds like a gibbering demented old man because he is a gibbering demented old man.

And it’s the truly, fully, saddest thing in the world to watch my once intellectual, eloquent, full of ten dollar words father unable to tell us that he is in pain.  We have to look for the signs: his body tense and guarded, shifting around on the bed un-restful, his eyes weepy, his voice burred, the tone of his proto-words pleading. Then, yesterday, finally able to dredge around in his mind to find one true word: “Help!”

And yes, now it’s a lot like caring for a pre-verbal infant.  A while ago, after my father’s first big collapse, on December 17th, 2007 our family’s personal day of infamy, when he fell apart in my apartment, unable to breathe, drowning in heart failure, and 911 came in the nick of time, he had a rather awful hospitalization.

This was the day of my parents move back to Manhattan from the wilds of Riverdale.  Six blocks from my house, so I could keep a closer eye on them, so they could have a grocery store and diner and drug store mere feet from their front door, no longer confined to manicured grounds, dependent upon the whims of occasional aides and cabdrivers or the available time of their daughter to venture into the world. 

What I had not calculated was that the ambulance would feel it necessary to bring my father to the closest hospital where he had no connections.  All my father’s doctors at that time were still up North, but I was told that even though the EMTs had stabilized him with lasix and nitro, time was of the essence. 

If I had had a moment to think things through I would have pointed out that Mt. Sinai was really just as close, as the trip through Central Park is such a quick one, but I was clearly not thinking clearly, in the rush of my first brush with “oh, my God my Dad just almost died”.

And while they might have decent cardiac care in the ER, the ward my father was put into was just terrible.  Since he was stable, he did not go into the ICU, and because of his age, he was placed on a geriatric unit, where the nurses really didn’t give two shits and didn’t want to be bothered with an angry old man in pain.

So when the narcotic pain killers they gave him caused him terrible constipation and they just didn’t care, when they handed me a pair of gloves and told me they wouldn’t be able to get around to removing his impacted stool until some time tomorrow but I could have a go at it if I wished, what could I do but dig in.

This was my first bout with cringe inducing, dignity stripping physical care of my father and it was a doozy.  My big revelation after that was that while cleaning the poop off your baby’s bottom is a loving act full of joy and promise, cleaning the poop out of your father’s bottom is a loving act full of sorrow and pain.

So my father is in a post-verbal state, which is like and so unlike my children when they were pre-verbal; situationally parallel, but oh so emotionally disparate.  You always remember your developing child’s first words, but what about your deteriorating parent’s last?   How can you know that you’ve heard it, and that there truly are    no             more             words                           to                                            come?

When Jacob was a little babe, he had all the earmarks of becoming a language learner: he cooed, he babbled, he goo-gooed on time, he could and would mimic words with perfect diction. One time he reached up to grab my hand while I was changing him; “Careful” I said and he repeated it back to me, clear as a bell.  But then it didn’t happen, he froze there, he wasn’t talking.

As he got older and the specificity of his issues were becoming apparent, I realized how un-hooked speech is from language.  Language in all its human-making glory, requires communicative intent and Jacob had absolutely none. 

As time went on he could label like a champ. Hold up a cup he said "cup", show him a running faucet and he said "water', but when he was thirsty he would just cry and cry.  The parts of his brain that needed to engage to know that these wordy things could be used to communicate his needs, his wants, his feelings; those connections just hadn’t been made yet.  The first time Jake made a request, found words to be of use and not just a neat parlor trick for labeling stuff, I cried and cried in relief.

Ask anyone what makes us human, what separates us from our animal cousins, and one of the first things they’ll say is language, the ability to communicate thoughts and feelings.  As we learn more about animal communication and how they sometimes can do even that, the distinction is often further refined, drawing the human line at the concepts of abstraction and self reflection, our ability to ponder and pronounce upon the parameters of our existence.  All this, my son Jacob eventually gained, and my father has now lost. 

However, this is all such a simplification, since my father, though stripped of his ability to communicate through words, though un-moored in time and space, is still quite thoroughly human.  Those of us who have known and loved him when he was still who he was, can still see the Jim in him.

This is why we have struggled so hard to keep him home, with support from caregivers who knew him when.  If we were to put him in a nursing home, all they would see, all they would know is the gibbering demented old man he has become, and it is much harder to give loving care when that’s all there is.

My sister Lois, who works in the field of elder care, has said that Dad is not ready to die yet, because he is still processing something, even though we can’t know exactly what.  We have to trust that he’s there in his brain somewhere, doing just that, the final work of his life, getting ready to go. 

I also think of all the non-verbal Autistic children, communicating through their behaviors, communing with the infinitesimal and the infinite that we, too busy, often overlook.  These children whose loving parents know how fully human they are, who hold unknown universes inside themselves, are so often treated so shabbily by the world, cast off because they have no words to trade. 

I think how thin the line is between Jacob and his non-verbal brethren; I think about the time before words, when we did not know if they would ever come, if he would ever understand us, or live “self directed” for the rest of his life.

It’s called the autism spectrum because it stretches so far across many sometime divides, and connects us all.  As parents of children on the spectrum our hearts stretch, too, take us to places we never imagined, never needed to imagine in the time before.

And so I go about my daily life. I pick Ethan up at school, try to look like I understand as he proudly shares his latest Pokemon conquests.  I gently correct Jacob yet again when he calls the female cat “he”.  I hold my father’s hand as he mumbles and raves.

I sit down to write about it all, using words like tiny lifesavers, keeping myself afloat, here in the choppy waters of my little pond, my wavelength of the spectrum, my slice of life.