Monday, April 18, 2016


A trip to Hawaii 2004 without Al
Getting Joe’s attention...

“Donna sent a message about the program last night on Nova.  She said it was quite informative and at times so moving it was difficult to watch but she’s glad she did.”

 Joe responds, “What? What did I do?”

“No, it’s a message from Donna,” I reply. “Here on my phone, see?”

Joe picks up my phone and looks at the screen, then in anger says, “I don’t understand this, IT’S JUST WORDS”.
I read the message again, only this time I’m almost shouting.

Joe’s right, they are just words to him and Al, written in some illogically random order with no decipherable connection.  But to me, what I read was a clear and succinct statement.  I tried three times to help him understand before I finally shouted at him in annoyance and gave up.

It’s a familiar scene in our new reality but not the way we communicated for the first 33 years of our relationship.  Back then there were long savored conversations about kids, careers and work, and even politics.  We rarely struggled to communication ideas and feelings.

Joe had depth of thought and seemed to know a lot about everything, especially sports.  If you wanted to really delve into a topic, Joe was the guy to talk to.  But now, here in Alzheimersville and just after this unsuccessful encounter, I’m left feeling sorry and frustrated.  Sorry that I shouted at Joe when I know he isn’t doing this intentionally, and frustrated that the only thing I can do to make it better is to change myself.

Every caregiver knows this, knows that managing your way through a day with someone with dementia means you frequently change and adapt, reshaping your approach to match whatever Al is doing to your loved one at that moment. For me, it’s a root cause for much of my caregiver stress.

I never know which Joe I’ll see today or even over the next few hours. Will he be able to communicate, or will Al be dominating, causing me to dig down to a whole new level And of course, there’s always the question of how much Joe actually remembers of what we talk about.

Looking back ten years or so, I remember Joe had started getting quieter at dinner parties, not his usual conversational self.  I brushed it off, attributing it to hearing loss and the fact that we were often with people who talked a lot, including me.  Now I believe it may have been an early symptom, evidence of a problem that I missed.  Hindsight is wonderful.

Last week Joe and I attended our first Early to Mid-Stage Alzheimer’s Support Group, a meeting designed for the person struggling with dementia and for their caregiver.  Although Joe had agreed to go, I wasn’t sure how he and Al would react.

I managed to get lost on the way to the meeting which put us in a rush to get parked and into the facility (not the way to start your first session).  I signed us in, got Joe seated and told him I would be in the next room with all of the other caregivers.  He seemed surprised and looked at me intensely.

“Where are you going to be?” he said.

“Just in the next room,” I repeated.  “This will be okay, I’ll just be over there,” pointing toward the door, “with all the caregivers.”  I knew I’d told Joe we wouldn’t be meeting together, but he clearly didn’t remember.  I headed out the door feeling a bit like I’d just left a child on the first day of school. 

 It turns out, Joe actually enjoyed the group session and agreed to go again.  We finished our outing with lunch at the Cheesecake Factory where several times I probed trying to find out what he thought about the whole thing.  He didn’t seem eager to talk about it.  All he would say was that he was not alone in his feelings.

It might not seem like a big deal that Joe and I went to an Alzheimer’s support group meeting, but it was a milestone for Joe.   It was the first time he had spent time with others who are struggling with their own Als.

It’s late evening and I’m sitting at the computer finishing this post.  Joe’s gone to bed so the house is quiet.  All I hear is the iconic howl of a coyote in the distance.  The coyote appears as a mythological figure in many Native American tales, often as a shrewd and clever beast.  But in some tribes he is the scoundrel, reckless and destructive; still in others he is a comic trickster who moves in and out of trouble. 

Maybe it isn’t a coyote that I hear.  Maybe it’s Al howling at the moon, looking for another mind to destroy.