I thought I could fix my Alzheimer’s patients. I learned to help them instead.

I thought I could fix my Alzheimer’s patients. I learned to help them instead.

Alzheimer's - Vox - Nicholas Conley

My first day in a nursing home was one of the most traumatic events of my life. I’d taken all the classes. I’d done the required clinical internship. I had the knowledge and the firsthand experience. But nothing prepared me for that first day on the floor.

It was a madhouse. Nurses were scrambling everywhere. Residents were constantly calling for help, ringing their call bells, but the workers were too busy jumping between patients to answer them. Many patients were unable to help themselves, even in small ways. Personal hygiene wasn’t optimal.

It wasn’t because the nurses were apathetic or incompetent. Trust me when I say that the people I worked with were some of the kindest, most giving people I’ve ever met. But the whole system is a chaotic mess; the result of a structure meant to warehouse people, where patient interests and business interests are often in conflict … READ MORE.

RIP, Chris Cornell

But it’s all right
When you’re caught in pain
And you feel the rain come down
It’s all right
When you find you way
Then you see it disappear
It’s all right
Though your garden’s gray
I know all your graces
Someday will flower
In a sweet sunshower

– Chris Cornell

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Father’s Day: Looking Back

It’s hard to name exactly what my first memory of my father was, but I know that the running theme throughout almost every memory I have of him is his laugh. That full, warmhearted laugh that came so easily and so often, that laugh which always made a person feel as if they had just told him the funniest thing he’d ever heard. In all of my memories of the red rocks and deserts of Sedona, my childhood home, I still see his smile, his Hawaiian shirts, his sweat pants, the way he’d be outside in the hot sun, cutting boards, nailing things together, planting trees.

Back in Sedona, I remember the car rides to school, to art classes, or to soccer practice, and how I felt so comfortable just talking his ear off, rattling off facts about superheroes or dinosaurs as he listened, laughed, and replied. I remember how I’d grip so tightly onto every insight he offered, how everything he ever said seemed so instrumental.

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And when I became a teenager, I remember Hermosa Beach, back in those adolescent years where I was busy finding myself for the first time, starting to become who I am now. I remember talking to him in the kitchen, seeing the first hints of grey just starting to touch his hair, imagining how we’d still be talking years later in a future that seemed so obvious at the time, but in reality never occurred.

Even now that it’s been a decade since he died, it still all seems so surreal. I can’t deny the fact that Father’s Day is always a strange day for me. Losing him when I was only 17 years old, still just a high schooler, created an unfillable pothole in the road of my life, and whenever Father’s Day comes back around, it’s as if I’ve been looking away and accidentally swerved right back into it. All these years later, I can’t help but always feel like he’s still only a phone call away, as if I should be able to just buy a plane ticket right back to Hermosa Beach and see him throwing a Frisbee in the sand, getting ready to go on the sailboat, or maybe just walking around whistling in one of those Hawaiian shirts he wore.

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Nicholas Conley – Author

Tragedy never disappears; it’s part of what makes human existence what it is, and I’m proud of the life I’ve made for myself. Veronica, the brilliant woman I’ll be marrying in just a few months, is the light in my heart, a constant source of love and energy that always brightens my day. I feel lucky to have such enormous love from my equally enormous extended family, a group that stretches all the way from Boston to North Carolina, Arizona to California, and more. I feel lucky to also feel such genuine love from my fiancée’s family up here in New England, and from all of the many, many close friends I’ve collected over the years. To be surrounded by such closeness, from people both near and far, is truly something amazing.

Life is life: tragedy, happiness, all of it. But most of all, on Father’s Day, though there’s an ache in my chest a mile wide that I can’t deny or get rid of, I feel lucky to have been his son, to have known him, to have called him my father. I wish he was still here, but the memories will never fade, and I’ll never forget him.

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The Freedom of a Person with Alzheimer’s

Alzheimer’s is still the sixth leading cause of death in the United States. Current estimates state that Alzheimer’s costs the United States about $172 billion a year. Even more shocking, only 45% of Medicare patients diagnosed with Alzheimer’s are informed of their diagnosis, according to medical records and Medicare surveys. The reason? Because too many people believe that telling a person that they have an Alzheimer’s diagnosis is sentencing them to “a fate worse than death.”

This disregards the fact that people with Alzheimer’s are still people, first and foremost. Having worked with so many of them, I can attest to the fact that people with Alzheimer’s experience the same complicated range of emotions that those without Alzheimer’s experience: love, happiness, pain, anger, relief, and sadness. They think, they feel, they have opinions. Treating these people as less than human, calling their condition “a fate worse than death,” is an abhorrent insult to the real life struggle that people with Alzheimer’s have to endure every day.

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Furthermore, not informing people of their Alzheimer’s diagnosis violates the most basic freedom that all human beings are born with: the ability to make decisions for oneself. A person who isn’t told that they’ve been diagnosed Alzheimer’s will still feel the symptoms, still notice the memory loss. Perhaps most importantly, one will be robbed of the necessary time to make plans for oneself, to plot out the direction that one’s life will take when the Alzheimer’s begins to set in more deeply, at which point communication becomes more difficult.

A person with Alzheimer’s deserves the same rights as anyone else. We should never forget that.

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More Alzheimer’s Reading:

Vox: I thought I could fix my Alzheimer’s patients. I learned to help them instead.

Alzheimers.net: Why I Wrote a Novel about Alzheimer’s

Headstuff: 10 Surprising Facts about Alzheimer’s

Big Al’s Books & Pals: Guest Post

Joseph Pinto’s Dusk and Summer

“I lost my father between dusk and summer.
Perhaps he left me long before I care to admit, long before he refused his last meals, long before his spent eyes flickered like candles behind cracked panes of some forlorn, abandoned house. Before his neglected muscles jellied into the folds of his stark white hospital sheet, and the rise of his chest grew shallower and weak. Maybe it was plain selfishness on my behalf; sitting at his bedside all those times, soothing his ears with encouragement as I squeezed his hand, desperate to impart the very courage and determination he had infused into me over my years. Even as he relied on me to raise a flimsy plastic cup of ice water to his parched lips. Had I become too scared to realize or just too blinded to ask: whose fight did this now become?”

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Great writing always comes from somewhere genuine inside the author.  Influences are numerous, of course; a novel could be born out of something beautiful, something sorrowful or even something ugly,  but the best writing is always a reflection of one’s truest self.  For novelists, the keyboard is the translator of the soul’s voice. As George Orwell once famously said, “good prose is like a windowpane.”

From the very first page of Joseph Pinto’s Dusk and Summer, quoted above, the reader knows that he or she is in for something heartfelt—and breathtakingly real.

Even if I hadn’t read that Pinto’s novella was inspired by his real life, it would have been obvious from the outset. I understand it completely, having gone through similarly heartwrenching experiences; I understand the place where this story is coming from, and why it needed to be told.  The emotions stirred up are passionately real, and Dusk and Summer is sure to create a stirringly empathic response in anyone who has ever lost a parent. The mix of emotions is not saccharine, but amazingly genuine.  The sadness, the anger, the guilt, the unrelenting feeling that now, out of nowhere, the person who gave so much to you needs your help—and there’s no way you can ever fully repay them.

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In the novella, the protagonist goes off on a strange journey at his father’s request. He ventures out to the beach, where he rediscovers his father’s past—uncovering a fascinating and mythological being that his father kept secret for all of his years. This magical presence integrates perfectly into the story, fleshing out its meaning and representing all of the magic that good parents give to their children, the magic that many hope to someday transfer to their own children.

And as the protagonist must go off and discover his past, so must all children.  When the time comes, when parents cease to be icons and are revealed for the real, flawed people they truly are—this is when true understanding can finally occur. Dusk and Summer is a deeply authentic novel, with a beautiful message that won’t be soon forgotten.

Voiceless Statement

DISCLAIMER: “Voiceless Statement” is a work of fiction that I wrote a few years back. It’s not quite a story, really; more of an emotional deliberation than anything else.  However, the subject that this piece deals with was in my thoughts several times today, so I decided to post it here.

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“Hey.  We haven’t talked in a while, huh?”

That’s how I start.  That’s what I say.  My strained words dangle in the cool air like little fishhooks in a caliginous ocean.   It’s a lost cause.  Within moments, these hopeful little words have faded away — a testament to the crippling insufficiency of verbal language.

Of course — as one would expect — there’s no response.  Crematoriums don’t talk back.  But I try, anyway.  I try because in this case, there’s no grave.  No tomb.  Nothing but a newspaper clipping and memories.

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There’s no place quite so dismal as the crematorium where a loved one was once incinerated.  It’s a location that chokes you up in emotion–then immediately stifles that emotion, grabbing you by the throat and shaking it out of you until you forget why you even visited.  I haven’t been here since the funeral.

I’m standing outside the building like, well…like someone who’s afraid to go inside.  I stand there, looking, looking, looking…I look away.  I turn my back.  I shake my head, discouraged.

Again, I have to remind myself that crematoriums don’t talk back.  Of course they don’t talk back.  What am I, stupid?  A charmingly cold New England breeze ripples through me; I zip up my jacket, pretending to be warmer than I am.  I’m exceedingly distraught.  Confused.  Again, I’m utterly unsure of why I even came here.   I walk around for a bit, debating my next action.  After a few minutes, I return to my previous position; despite all of my walking, despite all of my wandering about and debating the possibilities, I still seem to always come back to where I was in the beginning.  A circle isn’t truly a circle if it breaks.

But am I a circle?  Or has the circle been broken?

“Okay, okay,” I say, forcing a smile.  “I’m here.  I’m here, and I’m going to say hello.  Hello.

Hello?  I re-examine the open door of the crematorium.  I meant to bring flowers, but I forgot.  No, that’s a lie.  A complete lie.  I’m pretending to myself that I forgot flowers, flowers which I actually didn’t get because the idea of bringing them felt silly.  Who am I trying to fool?  Myself?

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“I’m sorry.”  I shake my head.  “I don’t know what to say.”

I stare at the building.  It stares back at me.  I childishly dig my foot into the ground, resisting the urge to walk away.  I turn to face the overcast skies above, with another forced smile.

“Nasty weather, huh?” I say, wistfully. “You’d hate it if you could see it.”

My heart yearns to blabber, but my mouth doesn’t want to find the words.  I can’t find the words.

I sit down on the wet grass, crossing my legs.  The water soaks right into my jeans, but it’s too late to fix that; once you’re wet, you’re wet.  You can’t magically become dry.

Childhood seems so far away, so distant, so remote. I spent so many years anticipating the plunge into adulthood that I forgot to hold my breath.  Now it’s just…surreal.  In my mind, I’m secretly still eight years old, you know?  I’m just pulling a big hoax on everybody, anxiously waiting for the moment when everyone finds out I’m really just a little kid wearing an oversized tuxedo.

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That’s what death does to a kid.  It rushes everything.  Death slams you, all at once, with the maturity and strength you normally would’ve developed over many years, at an incomparably harsh price.

I take a deep breath.  I came here to say something, didn’t I?   I came here to make a point.  To spill my guts. It’s time to spill my guts.

“I still miss you.” I say. “And I…I love you.  I love you.”

It’s been over a year — and yet, my tear ducts never seem to quite dry up.  But you know what?  No matter what, I still smile.  I still laugh at the memories.  I still grin at the photo albums.  But I’m not the same person I was before.  I can never be the same person again.

They say that time heals all wounds.  Okay, sure.  Fair enough.  No matter what pain a person experiences, happiness will return.  So yes, the wounds heal.  They do.  They really do.

But whoever created that phrase forgot to mention one part – one very important part.  Even when the wounds finally heal, the scars remain forever.  But you know what?  Maybe…

Maybe that’s okay.

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-Nicholas Conley