Invisible Men and Women – and Lessons from One Who “Awoke”

If you have a loved one with dementia, particularly if you have watched him or her lose the power to communicate with words, perhaps you have wondered, what are they thinking?  What are they hearing when you talk with them? Are they happy?  Sad? Is confusion the dominant, or only, feeling? 

You sometimes get hints of how they feel, including recognition they may feel profoundly trapped.  I knew one man who, when he could not find the words, would shake his head and howl.  I knew one woman who, when she was younger, used to have clever catch-phrases. By the time she was in her 80s, she had lost the ability to say a favorite phrase but she would say two words — “Head up”–  over and over. She wanted you to help her complete the phrase.  Her caregivers did not know that she had given hundreds of children horseback riding lessons, and misunderstood her words as a warning, perhaps motivated by paranoia. But, as one of her former students, when I heard her say “Head up” during my visit, I responded — almost automatically — with “Heels down.” It is an equestrian’s mantra for balanced riding.  And she smiled as if we had just completed reciting the Gettysburg Address together. 

With that background, I was captivated by a recent public radio broadcast, now available on an Invisibilia podcast, about the “Locked-In Man.”  Following an illness and a coma as a child, Martin Pistorius began to “awaken” during his teens,  but for more than 10 additional years he was unable to talk, or even to signal to people caring for him — or abusing him — that he was “aware” of what was happening. 

Imagine being trapped in front of reruns of  “Barney” (television’s purple dinosaur) day after day after day, for year after year.  I know a senior care facility that seems to have the “King and I” playing on a television around the clock.  Could Yul Brynner’s singing be just as much torture as Barney’s for someone who is unable to say “not again?”

In the Invisibilia  program, we hear how Martin slowly did recover, first by regaining some ability to control eye movements.  Fortunately, one especially aware caregiver noticed and took action to get him help.  He learned to  “type” (using eye movements) when he could not speak.  Gradually, he regained more control and essential functions.  In addition to the recent Invisibilia interview, Martin Pistorius tells his own story in his memoir, “Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped In His Own Body.”

But in listening to or reading this fascinating — and frightening — tale of one young man’s miraculous journey out of tragedy, some are recognizing lessons about people trapped by dementia or some other disabling condition, especially lessons about the importance of “caregiving.”  Tim Mullaney, an associate editor at McKnight’s Long-Term Care News, sees Martin Pistorius’ story as inspiration to be more thoughtful in caregiving, to be more aware as caregivers.  He writes thoughtfully and candidly:

“The Pistorius story is not all about substandard care. In fact, one of his caregivers emerged as a hero. She began to notice subtle changes in his condition, small movements that struck her as signs of improvement. It was this caretaker who convinced his parents and doctors to run certain tests again; they discovered that he could move his eyes with intention, to look at particular objects. This was the breakthrough that finally, after more than a decade, allowed Martin to communicate.

 

How often do we hear that quality care begins with direct caregivers? That these are the people who will notice small but important changes? That if nursing assistants and aides are listened to, all sorts of problems — from pressure ulcers to urinary tract infections to depression — can be nipped in the bud? We hear this so often that it can start to sound hollow, perhaps even to the frontline staff members themselves. The story of Martin Pistorius should be an inspiration to these workers that they can make life-altering differences for people in their care; and the tale should reinforce that managers need to listen closely to frontline workers.

 

Of course, listening closely to things we do not want to hear is difficult — a fact driven home to me by how hard it was to get through this podcast. Still, I recommend it. Just as listening closely on the job will lead to benefits, I believe the difficulties of listening to this episode are definitely outweighed by the rewards.”

For more of Tim Mullaney’s thoughtful essay, see “Ghost Boy: A Terrifying Story to Inspire LTC Caregivers.”