What carries us when the day is different, harder than it
has ever been before?
Making the trip to see my father is often tiring. He has
advanced Alzheimer’s and is living at a facility for folks with dementia who have become too aggressive to be cared for safely elsewhere. The staff are highly skilled, patient and caring, often light-heartedly making the residents smile. Still,
the six hours of driving and the ache of seeing how the disease is affecting him usually leave me a little weary at the end of the day.
Not today. Today the trip is exhausting.
Often Dad doesn't know who I am. And that’s okay. I don’t need
him to know who I am. I want him to be free from suffering, and I cling to the
hope that his forgetfulness allows for present-moment-contentment, or at least some freedom from feeling frustrated about something none of us can stop or reverse. When he doesn’t
know who I am, I hope and imagine that a moment of walking arm in arm with another or drifting off to sleep with someone holding his hand gives him some pleasure.
Not today. Today when I
touch his arm and say, “Dad,” he
turns and looks at me. His whole face lights up, and he says, “Oh!” with
real recognition.
He’d been shuffling around the room in navy sweat pants and a
grey t-shirt, white socks gliding along the tile floor. Always in motion, more agile than most, several inches shorter than I am, shrinking but still wiry strong. He never could sit still for
long, always needed to be doing, moving, working.
I touch his hair, white and sparse but well trimmed, stroke
his cleanly shaven cheek. As he ages his face seems to collapse like a balloon
that is slowly losing air. He must be feeling generally calmer- the staff do
not push haircuts or shaving on anyone if they are irritated or resistant. I
stroke his arm, take his hand and tell him I love him. Usually he is content to let me walk or sit with him.
Not today.
Today there is something he wants to tell me, something he
needs me to understand. “Real. . . . everyone was. . . . where. . . . ladder.
. . I don’t. . . ” His tone is urgent. Mini-strokes robbed him of words even when comprehension was better. Sometimes I can tell by his intonation and gestures that he is trying to make small talk, asking about the drive or the weather.
Not today. Today, he struggles with the words, his eyes filling with tears.
I have only seen my
father cry once- fifty years ago, when I was eight. On that day, Lassie, the collie
who had been his only companion growing up in an impoverished and brutal household,
had been hit and killed by a truck on the highway. My father wept at the side
of the road. He was thirty. I remember feeling frightened and protective at the
same time.
I feel the same now.
I tell him it’s okay. I keep my tone calm. Usually, he is quickly distracted, his attention drawn to
exploring some sound or movement in the room.
Not today.
Today there is something he has to tell me, a window of
recognition and a need to communicate thrashing against the barrier of a brain
that will not give him the words. I move closer and rub his shoulders. I keep looking into his eyes- blue-grey like mine, transformed to
green when either of us wear that colour, his favourite. He watches me. “I
don’t. . . .” I wait and will my heart to understand what he wants to tell me.
It has been months since he has said a complete sentence.
Not today.
Today, he backs up a little and tears spill from his eyes following
the lines on his weathered face. Leaning forward he speaks, wrestling each
word into being in an impossible act of will. His voice rises, the words becoming
a wail of terror and anguish: “I don’t know who I am!”
I step closer. He leans into me, trembling, sobbing. I hold him. Somehow I speak, squeezing words past the sharp rock
that has formed in my throat, making myself breathe, keeping my voice steady. I don't know if he understands me or even hears me- he will no longer
tolerate wearing his hearing aids- but I pour my heart
into my words. “You’re
my father. You are Don House, and you’re my father. It’s okay Dad.” My throat closes.
My father has always had the greatest respect for and faith
in my social work training and my work with groups and individuals. I can
feel how recognizing me has ignited both his anguish and his hope. He is asking
me for help, is hoping I will know something
that will help him make sense of what is happening to him. And I would
give anything to be able to do so.
Not today.
Today I worry that recognizing me has actually made it
harder on him, although the nurse tells me he regularly goes through a wide range of
emotions pretty quickly. Even today, in between moments of tears and
hugs, he wanders away and is happily preoccupied with movement at the end of
the hall, or a sound from the dining room.
People who know about my Dad regularly tell me with great conviction that Alzheimer’s patients are
working through past life karma, are souls who have chosen the disease to learn
something, are truly content in a reality closer to the divine. I understand
the need to make sense of something so horrible, the desire to seek or offer comfort by
claiming as true things we simply cannot know.
Not today.
Today, my father's
plaintive wail pulls me to stay with what I can know. Today, I am with him in his anguish, and later, on the drive home I will remind myself that I do not know whether he will remember or
re-experience this heart ache and confusion three minutes after I am gone, whether he has felt it before or will ever feel it again. Today I accept this sliver of comfort from the
vastness of what I cannot know.
Today, driving home, I let the tears quietly stream down my face, and I offer a prayer fueled by the ache in my chest: "Help him. Please. Help him."
Today I ask Love to carry us both, because there is simply nothing else I can do.
Oriah (c) 2012