Dancing with Death

When I started blogging, my friend David told me to blog about the things that I think about, the things that matter to me.  Lately I’ve been thinking about the decline of my father’s health.  That’s why I’m posting this on both blogs.  I’ve not had much free mental space over the last few months because my dad has been there taking it up with a thousand questions of varying sizes and shapes.

My dad is demented, meaning, he has dementia.  What is the appropriate form for that sentence?  Is my father demented?  It feels like a misuse of language to have to write that way: my father has dementia.  It’s one word or two too long.  Plus, it isn’t true.  Particularly since it feels most days like dementia has my father, like the synapses in his brain are freezing over or cracking or deteriorating or doing anything but firing in the way all my college classes suggested synapses do.  I paid a lot of attention to those classes at U of I.  I got mostly good grades, though I hated statistics and could have done better in Don Dulany’s course, especially if I hadn’t been devoting all that time talking to schizophrenics at strange hours through the night.  But these days I’m thinking that I could have paid more attention.

Anyway, my father’s dementia and the accompanying decline in his condition is essentially unsettling.  My experience of him and his health feels like all the sturdy things in my history with him are getting up, spinning around, and landing in a different place from before.  It feels like every conversation with him, each road trip to Little Rock, leaves me tired from the passing lane and sweating after a long dance with this disease.

And I’m not the one doing the real dancing.  I catch myself to say this.  Over the last six months, since we found out about the strokes and since we’ve started to confuse (i.e., not be able to tell) the stroke’s grip for the dementia’s, I’ve remembered consciously that it’s my father who is suffering.  And that’s the worse part.  Not our collective suffering as we watch or join in as a family responding to our loss and grief.  His suffering is the basic problem here.  I can recover.  Can he?

And I wonder to myself if there is a little grace in my dad not knowing how much he’s suffering.  And I check myself again at the hint of such arrogance.  Can my father, complex man that he is, be written off by my saying, “Well, he doesn’t realize what’s happening to him?”  How can I trust that?  How can I take comfort in the corrosive way the disease is handling him so that his head is all messed up, his memories following?  How can I be encouraged that his brain, eating or sucking or dropping away all the memories which make him him, is so distorting his reality that he is in some way spared?

I ask these questions because I want to be spared.  My father isn’t spared.  We aren’t either.  And these instances of death, these suspensions of time, when I’m not sure if my dad is “there” or “somewhere else,” are not healing.  They are small deaths, and they are upsetting, unsettling, and disturbing.  He is as pained as anyone in this.  He didn’t wish for this end.  And he can’t find the ways to express that any more.  Not on most days.  He’s the one really dancing.

Even though his feet are inching into a straddle some days and stepping normally on other days, it is my dad’s feet that I’m watching.  It is his pair of legs that my eyes fell to the other day as he walked to me on the arm of that nurse.  I had been buzzed into the acute care facility in Searcy, the place where they specialize in treating elderly men and women with psychiatric problems stemming from the disease I keep thinking looks like Skeletor.

He was shuffling slowly, arm wrapped in a sturdy nurse who introduced himself as Billy.  Daddy recognized me and that recognition was a gift even if I was struck by my dad’s gait.  It was an interior compromise, thankful for the recognition and willingness to overlook the pulchritude.

I could overlook that daddy looked bad, really bad.  Bad the way he was when he had the stroke in July.  Bad like when I first saw him in July, my brother Mark at my side, I was wondering where my father’s weight went.  Bad like I saw him for the first time as a truly different figure, no longer the man with muscles and a bench press in his basement with weights I’d never be able to lift.

My father’s arm was attached to his nurse, straddling, dancing, and I met him the rest of the way, took the other arm, and listened to the music of his experience and started dancing with him.  We walked slowly, really slowly.  And instead of going to the designated room, we sat in the closest chairs.  I suggested them because the distance to the room was too far for daddy after the stint from his room and too far for me after driving those eleven hours.

Dear Dementia

I didn’t believe it was you when I first saw the signs.  The missed memories were small, so slight they were unnoticed.  I forget.  I get agitated.  I make mistakes, lose things, get mixed.  I was like everyone else who loved: I wanted more.

I began what is still the dismal existence of a loved one struggling with you and your fingers wrapping and stealing things from my father.  I started to look at all those yesterdays, fading in my own memory, and I grabbed for them.  I called them back the way a grandparent calls for their only child’s offspring when, because of intuition, they know that was the last visit.  The rides in my dad’s white van and then the brown van.  There was a  black van too, I think.  I sniffed for the smell of worms and dirt when we went fishing, when I was so small I felt nothing but incompetence because I couldn’t do what my father found so easy.  I listened to the sound of his laughter, not just his laughter, but the way it sang like a Delta blues man.  I looked at the crinkle that was his smile.  I wanted that grin to be mine.

You pulled me from my memories.  Reminded me that you hadn’t won yet.  That yours was a most sinister work because no one knew, and no one knows, when your job would be done with my dad’s brain and body.  You shouted in the tone that was once was my dad’s.  It was his voice, and it wasn’t.  And the reality of my life—the lives of my brothers, the lives of our aunts and our extended loved ones—is that you and dad are dancing.  And his feet are clipping and stumbling under what was once his best song.

You gave him pain and depression at what he can no longer command.  You made him mad at everybody and nobody.  You snatched his ability to attend to the mundane affairs of bills and greetings and polite conversations.  You made him unpredictable so that he couldn’t travel, so that he couldn’t go home and live on his own and be alone.

I hate you.  You’ve taken so much and you’re not even finished.  You have hardly done to me, to us, what I know you’ve done to others.  But know that I’m not alone in seeing your memory-soaked hand clenching and withdrawing from the collective worlds which have been ours.  I hear the prayers of my friends in my ears.

Roland and the way his hand pressed into my shoulder just yesterday, the words he prayed, the faith he had for me, even though today’s conversation with dad tried hard to erase my faith and my friend’s.  Libby and her careful way of saying just enough to express a deep understanding, a selective and prophetic care, and how she brings a prayerfulness whenever she approaches.  Lisa’s powerful prayers that the ground I’m on is sure and steady and the way she keeps praying, the mirror she is to people I see and don’t see.  Lauren’s steady gaze when she asks me respectfully and compassionately how I’m really doing and dealing with the junk you’ve thrown at us.  Byron and his admonition to take care of myself, to do what I need, to care for me so that I’m not surprised by my own breaks and broken places.  Lucy and the regular ways she brings me before the Presence, keeps me there, helps me see me and see truth and prepare to live from more than pain but love.  Winston, his faithfulness and his ability, through history, presentness, and vision for what’s to come, and how he keeps at the work of partnering with God to help make me good through the terror of unknown trials related to you.

Your hand is hard.  But I do not envy you.  Because you, partner of all that is sinful, will have a lot of giving to do.  Diseases like you must hold the things you take and you must return them.  So, my faith, sometimes thin as cracking leaves at autumn’s end, feels tiny.  And even if it disappears to an invisible quality, it will not leave.  It will not depart.  You cannot take it from me.  You cannot steal it the way you have my father’s best qualities.  You cannot leave in faith’s place depression and sadness the way my father struggles now, even without the words to give to his interiority.  I’m looking at the collective faith of an increasing cloud of witnesses, and while your reach is long, it cannot capture all my friend’s strengths.  There are some things you cannot do.

Events That Require Attention

My spiritual director told me, among many other precious things, that there are some events in life that require our attention.  She said that those events don’t necessarily care when they get attention just as long as they get what they deserve.  They interrupt us, sometimes an inconvenient times.  They vie for a spot in our field of vision.

We were discussing my father’s health and my recent visits to see him.  She had mentioned that her mother was ill for years before she died and that she too had some dementia.  Then, she said the most appropriate thing.  These things are in our peripheral vision.  They’re always present, though not always in front of us.  Whatever we do, they are present, waiting, and, often, off to the sides of our lives.

There are other things to pay attention to.  There is the work of ministry, work that seems to flow against common boundaries.  There is the immediate family, in my case a rambunctious two-year old and a wife who studies part-time in grad school.  There is the rest of me.

And the normal events trade places with the peripheral ones, and the pieces of my life dance around until I see what I need to see.  There are moments when what we’ve been changes because of who’s around us.  There are similar moments when we change because who isn’t.

And the event of my father’s health.  The series of moments I’m holding regarding what can only be seen as tentative progress and expected deterioration.  These moments are changing me.

I’ve never been the sporadic type.  I’ve never been impulsive.  I’m comfortable with slower rhythms, with taking care, with intention.  But the slow movement in front of me, and in front of my father, scratches at who I am.  And I’m left with a deepening knowing that, sometimes, attending to the needed things is dreadful.

Unable to Complete the Story

Gabriel Garcia Marquez from the LA Times Blog

Nobel Prize-winning novelist Gabriel Garcia Marquez is suffering from dementia, which has made him unable to write, his brother says. “Dementia runs in our family, and he’s now suffering the ravages prematurely due to the cancer that put him almost on the verge of death,” Jaime Garcia Marquez, the author’s younger brother, told students in Cartagena, Colombia, the Guardian reported Saturday.

“Chemotherapy saved his life, but it also destroyed many neurons, many defences and cells, and accelerated the process,” Jaime continued. “But he still has the humour, joy and enthusiasm that he has always had.”

Gabriel Garcia Marquez, who is now in his mid-80s, is best known for his novel “One Hundred Years of Solitude,” first published in Spanish in 1967, which has sold more than 30 million copies worldwide. With it, he ushered in the genre known as magic realism, which combined fantastical elements and the real, and became closely associated with literature from Latin America.

“He has problems with his memory,” Jaime said. “Sometimes I cry because I feel like I’m losing him.”

Read this rest of this disheartening article where Gabriel’s brother says the author is unable to complete his last story by clicking here.