we are the lucky ones

19 09 2008

I don’t know what it is about today that has me thinking this way.  It might have been a casual conversation with my mom about food.  We talked about microwaveable meals, I guess, the ones my dad hated.  About a month before we started our journey in the hospice world, he was giving 90% of his Meals on Wheels “to the birds” (or so he thought, you’ll remember I discovered he was really feeding a cat…that would NOT have made him happy).  So in recalling all that today on the phone, mom laughed out loud saying, “wasn’t he an ornery bugger?”

Our journey was only “diagnosed” about 5 years ago right now.  I was in the hospital then too but taking care of someone different.  After a month there, we came home this very weekend.  It had been life and death and we barely got out alive.  And I’m reminded of all of those details because we were in the emergency room two nights ago and he’s been battling a fever of over 101° for five days. Bags of various fluids suspended from an IV pole can be our friend but they remind us of when there were seven hanging there at once.  

Less than two weeks after being released back in 2003, I got the call that my dad was in the hospital down in Indiana and was recovering from a stroke.  He’d had a quadruple bypass in the late winter of 2001 without any complications that I can remember.  After the stroke, a neurologist was added to the growing list of appointments he had to keep.  Ironic for the guy that had worked 34 some odd years without a sick day.  Now he had four doctors.  His hobby turned from garage sales to doctors’ offices and he still came home with unnecessary plastic items.

I remember going to see the neurologist with them and was surprised at the casual mention of Alzheimer’s as the diagnosis. Where did that come from?  Since when? The usual trial of meds began and some very unpleasant side effects seemed to us worse than whatever it was supposed to be treating.  Was quality of life no longer an issue?  Later in another setting with his internist, it was explained to me that he really had multi-infarct dementia caused by the strokes (at least two maybe three – and who knows how many mini-strokes that went “unnoticed”) hitting his brain in the same spot that was causing similar effects of Alzheimer’s.  I call them cousins.  Not exactly the same but way too many similarities to ignore.

During this last year with the three of us huddled in the same little office, the doctor patiently explained to my mom again that Billy had two terminal situations going on at once – congestive heart failure and dementia.  One would win out in the end and we had no guarantees of which would take him first but we could secretly cross our fingers.

The heart was quite a piece of work.  He didn’t have a heart attack to provoke the surgery so maybe it was just a “routine” stress test.  What they found out after they were inside was quite different. Two thirds of his heart had been seriously damaged by silent heart attacks all along.  What did he think it was – trapped gas?  A pulled muscle?  A hang nail?  That would be just like Billy to not complain.  So they rewired the whole thing and closed him up to let that last third do its job.  And work it did – for seven years.  

A year or two after the major surgery, they added what looked like a pack of cigarettes under his skin – a pace maker / defibulator doodaa.  I must say it was strange the morning we moved him to the hospice center and a rep from the manufacturer came by the house with a laptop and magic wand to turn the gizmo off.  Yikes – that was a weird feeling but I totally understood that at that point we didn’t want it kicking in and shocking him.

Now, post-hospice we know what won out in the end…his good heart.  Just yesterday I read an essay from the New York Times about a loved one in an Alzheimer’s unit.  I walked through one of those this year thinking I’d better anticipate our options.  I was profoundly sad and am profoundly relieved that we never got that far. 

This week of forced pause while I do different caregiving in Michigan (Does he have Epstein-Barr?  Is it just the flu complicated with tonsillitis?  Will he be able to sleep tonight and start to rest?) has been odd.  While I’m worrying about this “other” him – I’m thinking about her there alone.  She’s doing well.  She did some good grieving this week.   That wouldn’t have happened with me there pushing papers and figuring numbers and mailing out death certificates to everyone and their brother.  This is where we are – and we know one thing:

It could have been so much worse – we are the lucky ones.  Some families are still in the throws of it all…and I think about them everyday during the hours I dreaded the most.