Friday, October 30, 2015

ALZHEIMER'S: HALLOWEEN WITH "AL"


Joe with Grandson Calvin in 1996

It’s Thursday morning, and Joe is still asleep.  He seems to sleep a lot these days.  I understand this is part of the changes his brain is going through, but I wonder if I should wake him.  We don’t have anything scheduled this morning so there isn’t any compelling reason.  Besides, he’s had a stressful last few days with the surgery, and all the stitches in his face.   I know it isn’t anything to worry about. He’ll recover soon, maybe even without much of a scar.  I’m just happy it’s over and the cancer is gone. 

If only there was a cure for Al that was this simple.
 
I can envision the scenario in my mind:  Joe rolling out of an operating room with several nurses attending.  They’re laughing and joking with him about the number they’ve just done on Al.  I rush to Joe and hover over him while he lies propped up in a hospital bed with his hands behind his head.  He’s wide awake and smiling and calls me “darling’” just like he used to.  I ask him if he’s in pain.  “No, but Al is a goner,” he tells me. “The doctor sent him right back to the devil where he came from.”  I feel a sense of relief that can only be described as pure joy.

“Are you sure? I mean, is Al really gone?”

Back to Reality

From the bedroom I hear Joe cough.  He opens the door, slowly walks into the kitchen, and sits at the bar.  

“Good morning Honey, would you like some coffee?” I ask.  He looks at me with that familiar “what did you say” expression, and I know Al is still very much with us.  I ask him if he slept well and he begins to tell me about little people that were coming at him in the bedroom.  I’m not sure if he’s telling me about a dream or it’s something he thinks actually happened.  The other day he told me he was being surrounded by people, all the while pointing to the ceiling. 

Seeing something that isn’t actually there is normal and harmless if you are a child with an imaginary friend, or you look up to see a face moving within the clouds, or maybe even Elvis in a potato chip.  But it’s a whole other thing if you’re living with Al.  Then it’s just another step in the progression, and indicative of things to come.  It’s quite a dichotomy because Joe can seem perfectly functional, seeing the same world that I see, but then without warning suddenly be at odds with reality.

We’ll have breakfast on the patio this morning.   The temperature is perfect, and because it’s a weekend there won’t be noisy jets flying overhead.  The only sounds we’ll hear are from the hundreds of birds searching for their own breakfast on the newly over-seeded lawn. 

Joe will spend a few minutes sweeping the patio, brushing away the little bits shed from the trees the night before.  This is one of the tasks he seems to enjoy and will do without coaxing.

Late October in the desert is the next thing to paradise, quite unlike what I remember as a child in the Northwest where rain dominated the season.  I looked at the calendar this morning, noting the upcoming Halloween weekend, and was reminded of the all the times I’ve spent making costumes.  I’ve created getups from May West to Zorro and Raggedy Ann to The Hulk.  Joe was never into costumes, but he would agree (as he would say, “just this once”) to participate.  I dressed up the poor guy many times.
 
There are few things Joe enjoyed more than seeing all the little kids from the neighborhood in their Halloween dress up.   Two years ago and just a week after Joe had been diagnosed with Alzheimer’s, we attended our daughter’s party as Popeye and Olive Oil.  I remember Popeye didn’t say much that night. 

That got me thinking about what costume I could create for Al.  At first I thought of something monstrous, with red eyes cloaked in a hooded cape like a vampire. Then I thought maybe more like a wolf, with long fangs. 

But on further consideration I decided Al should look like me, or you, or the millions of people struggling with the disease.  Because Al isn’t some scary monster that you can see.  It’s an insidious disease within that slowly tricks and robs a person of their self.  Visit any memory care facility and you’ll know what I mean.

When I think back on all the changes that have happened over the past two years--different state, house, car, life, really--there is one thing that is the same.  Joe and I still love each other and this Halloween, like all the others, we’ll have a bowl full of mini candy bars at the door.  We’re not likely to see any trick or treaters but if that’s the case, we’ll have plenty of candy through December.

Never lose your basket, hold it high
Look the world straight in the eye and then repeat “Trick or Treat”

Granddaughter Hannah, the artist
Joe as Zorro in 1994

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