my dementia Clementine: a song before it fades away

 

memory gene

gtt

part 1 of 3 in the series “Dementia Summer” / (part 2 & part 3)

“In da-DA-dum, DA-dum canyon,” my father sings.  Actually, he is humming, not singing.  “Exca-dum-dum for a mine.”  My kids are shocked that his song is such a dreary one and that the words are mumbled.

We’ve spent summers with my father for 9 years, my children’s whole lives, as he’s sunk ever deeper into dementia. Throughout those summers, music — brassy, Broadway, lung-topping music — has been the way into his world.  My kids would pull out DVDs and sing show tunes with him for hours because that’s what was left to latch onto.  When my father no longer remembered legislative language or political strategy, and then when he didn’t remember my kids’ names, and then sometimes didn’t remember his own, he still could manage a complicated chorus from West Side Story  And when things were good he’d sing something like, “Everything’s coming up roses!”  Through “Lions and tigers and bears!” and the like, he could communicate fear.  When all else failed, he’d lead booming marches through the kitchen with his cane, my kids screaming with laughter behind him.

This summer we’ve come here, to my birthplace in the Arizona desert, in order to move my father out of his house and into a nursing home.  It’s a house that he once filled with his oversized presence, the house that he’s shared with my mother for years, but his care has become too much for her.  Actually, his care has been too much for some time already.  What’s really changed is that he’s crossed an invisible threshold, one that my mother alone had to draw, one that separates the familiar self from an increasingly unknown other.  My mother needed us to come here this year to bear witness, and to bear some of the unbearable work of this crossing. I in turn want my children to fully participate in the task ahead.  I want to talk with them freely about the hazy but sharp transition taking place.

I’d entered my father’s front door on some level believing that a wave of silly Broadway songs would wash over us and prove this plan all wrong.  I’d been wondering what to do if indeed he greeted us with a welcome song, some show tune with lyrics like: “I’m just fine!  You’ll hear that IF you listen!”  Instead, we’d found that irritating hum of a sad cowboy song. “Clementine,”  I tell the kids. “Oh my darling, oh my darling…, but my father’s version doesn’t get to the chorus.  He remembers a line or two, then fades and repeats.  Listening for clues to a deeper meaning seems foolish; my children too realize that this is not who they remember.

For years now, of course, my father has not been who I remember.  Before this incarnation of him, he was hard-charging, enraging and accomplished, complicated and puzzling.  He was a lawyer, a political boss, a statistics whiz, a frontline leader in his state Democratic party, a backroom player in Washington, DC.  I didn’t join in the hand-wringing of many others at the onset of his illness; his friends and fans had noted with alarm each word he forgot, each name he blanked on, each direction he misunderstood. Maybe out of ignorance, or empathy, or just relief that the arguing edge was gone from our relationship, I thought of the first years of dementia as just another phase of identity, not an erasure of what had come before.  It was a shift from worry over poll numbers to simple joy in musical numbers. And as long as there was joy, who was I to say that it was a lesser state of being to march around the kitchen than, say, to run statewide elections?  This new personality was Zen, it was pure. There was less stress (for him anyway), and it was maybe all that mattered in life.  We had a better time together then than we’d ever had before, and I judged harshly his friends and relatives who retreated, uncomfortable with him versus their memory of him.  Now, however, this random cowboy song has me faltering.  “Dum da-DUM-dum, Ninety-niner, Dum-da-DUM-dum, Valentine.”  “It’s Clementine!” I say. “The girl’s name is Clementine.”   As I correct him, I realize what a song of loss he’s singing.

For the last several summers, we all rolled with the changes and adapted to the weirdness of singing show tunes instead of talking. Throughout, the intensity of my father’s will to stay present, to use all available brain cells to make meaning, was a constant.  When the call came, though, asking my husband and children and me to arrive early this year, we realized that his intensity had turned on itself.  He no longer let anyone help him with daily necessities, and he was upset when anyone tried.  When it was time to shower or to remove shoes, he refused.  We’d promised our children that we would talk about what these changes meant; they are kids who are used to touchy subjects.  From my daughter’s adoption, to the rest of our family’s whiteness in a time of racial violence, we talk and talk and talk some more about graphic truths.  But, in this case, standing before my father, I’m speechless.  Neither here nor there, clearly him but clearly not him, eyes still bright blue but looking past us, NOT dead but not what he would have expected from being alive.  In that confusion, aphasia makes sense.  The sudden, wordless image of purposefully drowning my father says succinctly what I have no words for — but that image isn’t one to talk about with my children.

He hasn’t left instructions on how to handle this moment and the years that may follow it.  Like most of us, how could he know what he’d feel, or how aware he’d be of those feelings?  How could he imagine what it would be like to hear his thoughts fade to a fuzzy hum?  My father probably had hoped that the music in his head would keep playing, lifting him along on rhythms that resembled what he knew.  Now, in what’s still his living room, I see that my daughter has redoubled her efforts to connect with himshe’s dancing and clapping to his tune.  He watches her closely. “Dum-da-DUM-dum, Calamine.”  My son rushes in with the rest of this song’s ridiculous lyrics . He’s searched online and he meets my father where he is, with verse after verse of Clementine, each “dum-da-DUM-dum” filled in correctly.  My kids huddle around the iPad, exuberant.  “This is a horrible song,” they agree, but they keep at it anyway, as if to wake someone from deep sleep.  And — to my surprise — they succeed.  My father joins them in a voice that’s loud and clear.  With each line, he is more fully present.  If I didn’t know better, I’d say that he was magically becoming himself again.  But I do know better; who exactly would “himself” be?

Lost and gone forever, Dreadful sorry…  they sing the chorus, and I take it to heart, suddenly sure that my father is sending us signals.  But is he apologizing for his condition, with the “dreadful sorry”?  Or is he admonishing me, defying me to think that he’s “lost and gone forever”?  Are they words of acceptance or of deep regret?  Or are they just the best he can manage?  In the space of a few minutes, I hear each of those possibilities loud and clear.  “Then I kissed her little sister,  And forgot my Clementine”  — the last words of the last verse and my children shout, “Ewww, GROSS!”  They turn off the iPad and run off, finally bored.  My dad turns to meand he grabs my hand, too tightly; I grab his hand too tightly, too. He sings, in a full, playful voice, “And his daughter, Clementine.”   There it is.  I hear it with the stab of certainty.  “That’s right,” I say. “I’m your daughter.”  And those words, I know, are ones he means.  Not the gone forever of the future, not the dreadful sorry of a vanishing past.  Just the here-and-now daughter.  I finally have words to take to my children, even if they are goofy lyrics from a cowboy song: “He knows that 1) I’m his daughter, and 2) you love to sing with him.”  That’s all that our big conversation finally amounts to.  What more is there to say?  Da-da-DUM-dum, Da-da-DUM-dum.  My kids and I hum it to one another that night, after my father’s been whisked off to bed.  And in the days that follow, we hum it again, after we’ve whisked him from his house to a new home.  We say volumes without any words.  We all know — and at the same time, we can’t know — just what the humming means.

gtt