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.

Harvey Dickson on “What My Father’s Dementia Told Me”

I read this provoking and compelling piece, “What My Father’s Dementia Told Me,” by Harvey Dickson.  You can read the full post here at the NYT blog.

I was the copy editor assigned to work on Alex Witchel’s memoir about her mother’s dementia. I was fortunate because her writing is compelling and didn’t need any help from me, and also because it forced me to focus on the quality of my father’s dementia, maybe for the first time.

Alex is right: the first whispers of dementia are only obvious years later.

Sometime in 2008, I went to visit my parents, cook for them, do some shopping for them. They were already infirm: my mother in her early 80s, my father approaching 90. At the dinner table, I mentioned the Cadieux Cafe, a Belgian bar on the East Side of Detroit, where several generation of my family have lived. My father jumped in with his memories: long-distance bike races sponsored by the cafe in the 1920s, visits there as a young man in the 1930s. But at some point, he got a far-away look in his eyes, which was not his usual look. He was in his father’s car. “I was standing on the seat next to him. I was just a little guy. We stopped in front of the Cadieux Cafe.” The look on my father’s face shifted. “He went in and didn’t come out. He was in there so long. So long. I must have been crying and raising hell in the car, because a couple men in hats stopped to talk to me, and then they went in to get him.” At this point, my father slammed his fist on the table, levitating the silverware, and shouted, “I was never close to my father.” That my father would have any kind of emotional outburst not related to Notre Dame football was unimaginable. My mother and I were shocked into silence.

Those moments in which his mind left us and went somewhere else came more often, especially after he was hospitalized on Christmas Eve 2008 for a severe infection. After his release, he was in a rehabilitation facility for three months. My mother and I were visiting him one Sunday afternoon when a therapy dog bounded into the day room. My mother said, “Doesn’t that dog remind you of Bammie.”

I thought, Mom, don’t bring up Bammie.

There were several Bammies, but the first was a dog my father adopted, on Okinawa or another island as his Marine unit moved across the Pacific Ocean during World War II. Looking at the therapy dog, my father said that one day he ordered a corporal to watch Bammie while he went out on a patrol, telling the poor guy (as my father told us), “You guard that dog and make sure he’s here when I come back, or I will shoot you in the head.” (That statement was punctuated with a word common to active-duty and retired Marines.) Within a few weeks, his unit was ordered to move on to the next island. The day of the redeployment, Bammie was missing. My father wasn’t really talking to us, but he said: “We waded out to the boats. I was calling his name. The motors were already running. And then I saw him. He was running down the beach. He jumped in the water and swam out to the boat. I pulled him in. . . .” And by this point in the story, my father was sobbing. He and Bammie rode the boat out to the troop ship and, eventually, with the help of sympathetic Air Force pilots, the first Bammie ended up on the East Side of Detroit.

My father’s dementia was hardest, of course, on my mother, who was mentally sound but depleted from fighting her non-Hodgkin lymphoma. She was with him 24 hours a day, when he wasn’t hospitalized for his physical problems. She endured his mood swings, the endless repetition of the same questions, his obsessive monitoring of her whereabouts. Drugs helped. His night panics decreased and he seemed calmer, but we could see a constant and permanent decline. I did what I could when I visited once or twice a month, but each time I came back to New York feeling guilty and helpless and relieved.

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Images of Fragility

I was at my aunt’s table last week, looking over my father’s discharge papers from the hospital.  He had suffered a stroke a few days prior, while we were all at his family’s reunion.  He didn’t come, of course, because he was in the hospital.  I had a sense that he wasn’t going to come to the reunion, an apprehension that I couldn’t quite explain.  I didn’t know it was going to be a stroke.

It took a few days for me and my brother Mark to get by my aunt’s.  I had to return home with Dawn and Bryce and after being away for a week, be at the office for at least a day, long enough to begin feeling overwhelmed by all that I was leaving undone.

We sat at the table, looking at him, inspecting him.  We talked and listened.  I had read the physician’s notes to a chaplain mentor friend over the phone the night before.  I think we were in the mode of getting things done by the time my aunt brought another stack of papers.  In that stack was a folder, brightly colored with faces of elderly people.  It was a resource packet on dementia.  She told us a few weeks before that he had been diagnosed earlier this year.  I flipped the pages, scanning the headers, not really reading at all.

I looked at the people on the cover of the folder and thought back to my father’s face.  I looked over to him.  He was sitting in a large chair, seeing what I wondered.  His vision, memory, and cognition were impacted in a dozen ways from the stroke.  His face had that strange openness that I had seen before on him, back when it was simply my dad’s way of settling.  He isn’t a hurried man.  He is cool, collected, almost distant.  So watching him, after the stroke, I wasn’t surprised that he was somewhere else, detached from the moment with its anxiety, even while the anxiety stemmed from concern for him, his body’s constitution, and the next doctor’s appointment.

My dad was somewhere else.  Perhaps he was taking refuge in his own thoughts.  Perhaps he was between gratitude that we cared and irritation that we intended to be so convincing.

And I looked down at the pictures of those smiling old folks.  Their faces didn’t look like my dad’s.  There were individuals and couples.  A family sat together, if memory serves me.  They all wore smiles.  I didn’t see hints of broken brains and torn memories in their eyes.  I didn’t see the early signs which were discussed on the back side of all those happy people. There were no true images of fragility there.  I had to glance up to see them.  I had to look at my father for that.