Friday, November 20, 2015

ALZHEIMER'S: Happy Birthday From Al

Joe and I wintering in Arizona 2013

When I was a child, November was always my favorite month because it meant birthday presents and cake and ice cream.  There was only one problem. My sister’s birthday was just nine days after mine and because our mother was very thrifty, we celebrated our birthdays together, on one day with one cake.  I remember being upset and outright exasperated that Mother didn’t understand the seriousness of this issue.  After all, didn’t the word birthday mean birth-day, the day of one’s birth?

It was always a big decision as to which day we would actually celebrate “our” birthday.  Being practical and not wishing to favor one child over the other, Mother would choose a day in-between, a sort of neutral ground.  We carried on with this neutrality right up until the year my sister flew the nest and moved into her own apartment.  

Finally, I had a real birthday. 

But like many good things in life, the years passed and I no longer saw birthdays through the eyes of a child.  I began to dread them, realizing that they meant I was just another year older. 

One day my five year old niece came to visit and overheard me lamenting an upcoming birthday.  She leaned on my knees, looked up at me and very seriously said, “Aunt Jane, why would anyone not like birthdays?”


A couple weeks ago, Joe and I sat at the bar in the kitchen eating breakfast.  Joe hadn’t said much, and was just about finished with his Cheerios and banana when finally I couldn’t stand it anymore.

“Do you know what today is?” I casually ask.

“What?” This is Joe’s automatic first response to all questions. 

“Do you know what day it is?” I repeat. 

He leans to the right, looks over my shoulder at the digital calendar/clock I bought so he can easily keep track.  “It’s November 3rd, and it’s 8:45 a.m.”

I probe further. “Yes, that’s right, but what is this day?”, and more specifically, “Do you know what happened on this day?”

“I should know this, shouldn’t I?” He ponders the date.

Finally I tell him, “It’s my birthday.” 

He shakes his head and smiles, “I know that.” (I’m sure that if allowed more time he would have come up with it.)

I smile back. “You know what I’d like from you for my birthday?”

He looks at me with a worried stare, knowing that he doesn’t have a gift for me. 

“I’d like you to sing Happy Birthday to me.”

He sighs in relief. “I can do that.”  And he starts.  “Happy Birthday to you, Happy Birthday to you, Happy Birthday dear………..,” and he stops.   His eyes are now wide open and his expression turns to a slight look of panic.

I cackle, “You don’t remember my name?” We both start laughing.  He shakes his head telling me that he does remember it and starts in again, only this time he sings my real first name (which I do not use and will not reveal in this post).  More laughter.  

I suppose it shouldn’t have been a moment for humor but really, it was funny.  That laugh was as good as any gift he could have given me.

It’s impossible for me to understand how Joe copes with all the changes going on in his brain.  As much as I’ve studied this disease, I still understand only a very small part of what is actually happening to him and can barely imagine how it might feel. 

I follow a guy on Twitter, a journalist and author from the east coast, Greg O’Brien, who himself is struggling with Alzheimer’s.  He’s written a wonderful book titled, On Pluto: Inside the Mind of Alzheimer’s.  This week Joe and I have been reading it together and boy, are there many “aha” moments.  It’s a first-hand account of O'Brien's own disease process written with humor, faith and journalistic grit.  I would highly recommend this upbeat and insightful read.  (Check it out on Amazon.) 
We’re having several visitors over for the Thanksgiving holiday and we’re really looking forward to it.  I’ll likely talk their leg off and they may be sorry they came but, right now I don’t care.   I’m just happy to have the company.  Besides, the guest bathroom remodel is complete so we’re all ready. 

Our little project took longer than I’d planned, and our multiple trips to the home improvement store were a bit overwhelming for Joe.  Once again I’ve confirmed that the key to managing with Al in the family is maintaining routine, routine, routine.  Any variations have impact and even the simplest of changes can sometimes derail Joe and Al.  Picture eight days of “strangers” at the door by 7:30 in the morning with tools and materials in hand, coming and going, demolishing stuff with cell phones ringing, and you may get a sense of the problem.

Yesterday, after putting the finishing touches on the guest bath, I stood in the doorway, sighed and reminded myself that the result was worth the pain. 

Now, what else can I tear up.  Oh wait, I forgot, routine, routine, routine.