ALZHEIMER'S--IS ANYBODY OUT THERE

Heading Home from the Hospital

What was that sound?  “Is anybody out there?”  I squint, scanning the darkness, but see no one.  

I hear it again, a low throaty sound.  “I’m serious, who’s there?”  Still no answer.   I’m now shouting. “Okay, this isn’t funny!” 

I’m alone in a dark and unfamiliar place and can’t find my way out.  I think to myself, “Maybe across the room there’s a way” so I walk toward the only light I see, just a flicker.  I feel along the wall and finally reach the frame of a door.  I run my hands up and down the wall but feel nothing.

I sense a cold dampness and a chill goes down my spine.  My breathing changes.  Now I’m really frightened.   My mind races. “Who knows where I am?  I must have told someone where I was going.”  Then I remember, "Joe, Joe knows.  He’ll find me.  He’ll come looking for me, I can count on Joe.” I flash back to the time we vacationed in Paris and the guy with a gun (at least I thought it was a gun) came after me and Joe stepped right in between us, ready to take a bullet for me.  “Yes, Joe will come for me.”  I crouch down, trying to avoid detection until Joe comes. 

But Joe doesn’t come.  I wait and wait but he doesn’t come.  I realize I’m completely and utterly alone.  I feel sick with the dread of the emptiness that will surely engulf me.

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So now you know why I should never try to write horror stories.   This is of course an allegory to say I’m losing Joe; not today or tomorrow, but at some point--Joe will not be coming.  For the last fourteen days (his hospital stay) I’ve watched him become a little less of himself, filled with drug after drug, all with good intentions and meant to help but just too many.  I've known all along that Joe would be leaving me, his family and his friends, that Al the mind monster would slowly pull him from us, but somehow this morning I’m sensing just how deep my loneliness will go. 

I’ve been desperately trying to hold on to Joe, to pull him back from Al, to make space between us and the edge of the precipice, but I’m losing ground an inch at a time.  I guess that’s why they call it “the disease of a thousand little losses”.  (Okay, so I’m not sure anybody but me actually calls it that.)

This latest saga began about two weeks ago.  Joe woke around midnight trying to get dressed to go to “the game”.  I’m not sure what game he thought he might be missing but to calm him down I told him the game didn't start until morning, that we would go to the game then (little white lies…maybe a future blog title).  He seemed relieved and drifted back to sleep. So did I.

When morning come, I felt Joe's side of the bed and realized he wasn't there.  I scrambled up and into the living room where Joe stood looking cold and confused.  A pile of peeled bananas was on the counter and everywhere I looked there was disarray. 

Being the caregiving shrew that I am I began to skriek at him.  (I know...but I just blew a gasket.)  It was as if a vandal had been in the house.  I kept saying, "What have you and Al done?" and Joe kept repeating, "I don't know what happened."

I finally gathered my composure and realized Joe was in real stress, different than other times.  A foot that had been sore and a little red the day before was now swollen and causing him real pain.  I sat him down with an ice pack while I continued the cleanup.  Dr. Jane assumed it was a gout flare up, which in the past could quickly be resolved with medication we kept on hand.  By mid-afternoon Joe began to feel ill. Again, Dr. Jane thought it must be him catching the cold I was still sniffling with.  But when Joe couldn’t eat his lunch, couldn’t stand up and began to shiver and shake, I called for help. 

You’re probably wondering why it took me so long to realize it was something serious.  In hindsight, I should have reacted more quickly.  But this all happened within a few hours.  

Nothing has prepared me to face the things Al is doing to my loved one or what I’d have to do to for my loved one.  I’ve read a lot about this disease and followed other caregivers’ journeys with the same issues.  But nothing, nothing brings it home like your own reality.

Joe is home now, in a rented hospital bed in our living room.  The infection that body slammed him is slowly subsiding.  He should be in a rehabilitation center but because of his dementia no facility would take him.  They said he was a “fall risk”, a “liability”, a “high acuity” patient, which are just other ways to say, “we don’t want him”.  These are facilities that are covered by Medicare, but because they are private companies, they can pick and choose who gets care and who doesn’t.  So, we’ve hired our own private care which will be entirely on us.  Something is wrong with a system that has failed completely to address Alzheimer’s or other dementia patients’ post-surgery needs.

That’s enough already.  Being down in the dumps doesn’t solve anything.  It’s not the way I roll.  I turn crappy into happy, bad into glad, pain into sane, (help me here, I am running out of rhyming phrases).

And when I ask, “Is anybody out there?” I know you’re all out there, wishing the best for us and ready with a kind word when we need one.