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.





It’s Friday I’m in love

15 08 2008

I’d love to think that you’d all be familiar with The Cure and their song about Friday’s, but I know better.   Sure there might be lots of room for interpretation here but I’ll give you my Billy spin. And I’ll even treat you to a great acoustic version on YouTube.  It’ll add to your read time but will be worth the detour.

I don’t care if Monday’s blue
Tuesday’s grey and Wednesday too
Thursday I don’t care about you
It’s Friday, I’m in love

Monday you can fall apart
Tuesday, Wednesday break my heart
Thursday doesn’t even start
It’s Friday I’m in love

Saturday, wait
And Sunday always comes too late
But Friday, never hesitate…

I don’t care if Mondays black
Tuesday, Wednesday – heart attack
Thursday, never looking back
It’s Friday, I’m in love

Monday, you can hold your head
Tuesday, Wednesday stay in bed
Or Thursday – watch the walls instead
It’s Friday, I’m in love

Saturday, wait
And Sunday always comes too late
But Friday, never hesitate…

Dressed up to the eyes
It’s a wonderful surprise
To see your shoes and your spirits rise
Throwing out your frown
And just smiling at the sound
And as sleek as a shriek
Spinning round and round
Always take a big bite
It’s such a gorgeous sight
To see you eat in the middle of the night
You can never get enough
Enough of this stuff
It’s Friday, I’m in love

I don’t care if Monday’s blue
Tuesday’s grey and Wednesday too
Thursday I don’t care about you
It’s Friday, I’m in love

Monday you can fall apart
Tuesday, Wednesday break my heart
Thursday doesn’t even start
It’s Friday I’m in love.

 

Here’s how Billy’s perfect Friday played out.  He’d come out to the kitchen, sit down on that chair and get his shoes on.  Go out to the drive way before 5 a.m. to get the paper, then take that orange bag and stuff it under the chair cushion until he needed it for garbage collection. There would be an early snack of “pbuzzes” (Honey Nut Cheerios).  It’d be a long wait but somewhere around 10 a.m. after patiently pacing for a good long time, I’d take him to Kosmo’s for a second breakfast of biscuits and gravy.  There’d be more waiting but the time could be passed going to the Dollar Store to buy more “1000 flushes” than a toilet could use in a life time – but you can never have enough blue water.  Or we could wander around the grocery store to buy more things to add to the never ending food pantry he has going.  

Sometime in the early afternoon, we’d get “the call”.  That’s what Friday’s were all about.  A highlight of his week.  Back before we took his keys away (still rue the day but I have to revisit alot of things here as time goes on), the routine would be more to his liking.  He’d go down to the church gym…do 100 laps the length of the basketball court (I’m not quite sure if that was 100 steps or one length would count as one), and that work out would be topped off by grabbing a ball and shooting four baskets.  If he didn’t make all four in a row, he’d start shooting again until he made them all.  Just 52 weeks ago – he could still pull this off.  Then he’d be warmed up for his “job”.

His was the business of stuffing the church bulletins.  I don’t know how many years he’s been doing this – but a few at least. Never particularly time efficient but certainly careful.  And what it really was all about was his way of serving his church family.  Something that has always marked his life – quietly, behind the scenes, not calling attention to himself.

If I wasn’t around on Friday’s the routine was even more modified as my mom would take him down to pick them up, they’d take them home and return them later in the afternoon and maybe stop for a hamburger on the way home around 4p.m. before they’d call it a day.  

About two months ago things really got dicey.  As they were leaving the house with a wicker tray basket that conveniently transported the few hundred folded missives…he stumbled on the steps out of the kitchen – tried catching the basket and got into a bloody mess as a result.  It was so traumatizing to both he and mom that he “retired” himself.  But I knew we weren’t going to give up that easily.  So I’d make it a point that Friday’s were on my schedule to be with him.

His first time back on the job after the tumble toss was on the 25th of July and it was a whopper of a job.  Three inserts!!  What were they trying to do…stress this guy out!  Force another retirement?  We set everything up in one of the Sunday School classrooms.  His breathing was so labored that he’d have to stop every short stack and take a break.  I worked out a system that I’d stuff, he make sure that they were carefully placed and forcefully creased – ‘coz that was essential.

The next week I decided to just pick them up and take them home so he didn’t have to leave.  We got them done in no time at all and I returned them with no mishaps.  But seven more days and things were different.  We’d been out to the doctor all morning and that was the day they’d ordered him on oxygen and we were at home waiting for it to be delivered.  The church called when he was sleeping…I went to get them and brought them home. He didn’t wake up when I came home and I left it at that.  Fifteen minutes later – I was done stuffing, the bulletins returned to the office just in time to be back to the house for the influx of equipment from Walgreen’s Home Care.

So here we are – another Friday.  From here on out everyday will be Friday for Billy.