twinklin’

10 06 2010

Last Saturday, I took Donny Diva and Shop Girl down to surprise the Mrs.  I learned a long time ago that it is best not to talk about plans ahead of time so as not to disappoint if things don’t work out.  Besides, if she would have known they were in the car with me she would have gone to Ace Hardware and bought all the baby-proofing gadgets she could find.

While I did my usual duties around the house and running out to get groceries, etc., they just visited.  I don’t know who was more entertained by the whole thing – the Mrs. or Donny Diva.  The giggles and laughs were about equal when it was all said and done.  It reminded me of some of the similarities that Billy and Tractor Baby shared two years ago (you can read about that here).  Before we wrapped up our visit, Shop Girl sat down at the piano with Donny Diva on her lap.  It took him just a minute or two to get the hang of the physics lesson of action-reaction.  Suddenly he was “twinklin’ ” on the piano – that’s what Billy used to call it when Shop Girl would play.

So I guess that alot of what happens in life is that we end up where we started from.  Sometimes our hands don’t work like we want them to.  We need more naps.  Our view of the world as a whole can be limited to what is happening in our house and our most immediate surroundings.  And more often than not, social gatherings can be intimidating.  When we went to a graduation open house the other day, the best Donny Diva could do was to bury his head in a cousin’s shoulder to help him cope with all the people that wanted to kiss on his face.  Eventually he warmed up and all was fine.  It just took a few minutes.

The Mrs. feels like that too – but there was no shoulder to share.   She was at an open house on the same day and told me later that it all made her feel very lonely.  She was very aware of feeling like the “odd man out” as she puts it.  Surrounded by couples, all old friends, feeling like she didn’t belong.  She missed Billy something fierce.

Hearing about how she felt made me defensive.  It gets my ire up when we routinely plow over the elderly but would never treat a toddler that way.  We are impatient with their inability to move like they used to, their lack of desire to do what they used to or just their general state of “winding down”.  A conversation with her can jump from the 1920’s to 2010 mid-sentence and takes all kinds of special abilities to maintain sanity.  I’ll be the first to admit that  I don’t have the stamina it takes to be Donny Diva’s full time caregiver and I get equally tired when I have to deal with the Mrs. for days on end.  But none of that is like  a friend of mine who is being taxed on a moment by moment basis as she is an only child dealing with her mom’s Alzheimer’s.

So all I ask is that when you are out and about running around in your world with all your fingers working just like they are supposed to and mentally juggling a million things at once – if you find yourself in line behind someone with more gray hair than is on your head – be kind.  Be patient.  Be personal.  You may be the only person that speaks to them all day and you’ll turn around twice in life and you will be that old person.  There is no escaping that reality.  There is a new generation stepping on your heels ready to sit down to take their turn twinklin’ on the piano.





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.





no more down and outers

16 08 2008

Orange juice.  Chocolate ice cream.  Cranberry juice. Three things that we never knew him to like.   A fan blowing on the face.  Hanging up things we can’t see.  Carrying on one way conversations.  Using invisible tools. Two blankets and freezing cold.  Watching two “bugs” battling on the wall.  Twisting up an entire blanket.  Perfectly still.  Not breathing for as much as  30 seconds.  Talking.  No talking.  No eyes open. Mouthing every word to Amazing Grace as the chaplain played his guitar. Trying to sit up.  Not moving a muscle for the entire night.  Bright blue eyes staring through you.  “I’m just trying to figure out what I’m supposed to be doing…”

But we are quiet. We are at rest.  We’ve all read the booklet left us by a hospice nurse.  A folder full of pamphlets  – but this ONE…we must read.  Yeah right.  Do you know how much information is coming our way?  But these people radiate such an energy of calm and a quiet “in charge” that their lead must be followed.  They have not been wrong yet.  They do death.  That little blue book explaining the signs we will see – our only touchstone that this is really happening.

So after almost 48 hours in a hotel, conferring with the committee – I drive back to home home for a couple of days or less depending on the situation.  The time in the car was typical except I kept thinking of all the times that I tried to imagine how I’d feel on this particular trip.  When the doors to the hospice center closed behind me, I walked out into the courtyard where all rooms have their windows overlooking plants, flowers, trees, statues…from outside, I leaned into the window to his room and peered through the slated blinds.  Just as I’d left him…just as he’d been all day.  They said we’d have days like this following days like yesterday.

Yesterday there was some activity that we had to play along with – feeling as if we were entering into the game of charades mid-stream.  It was fairly easy to pick up the cues and roll with it.  Lots of visitors – some expected and anticipated, others a surprise.  Playing the part of gracious hosts at a party we didn’t even want to be at – never wanted to host.

As exhausting as it was for me – it was harder on Billy.  The afternoon shadows were lengthening and he still had words for my brother-in-law, “are there going to be any more down and outers?”  Down and outers…we laughed quite hard.  He was tired too.  Too tired.  So much so that today there were barely any words or even a hint of understanding when he was being spoken to.  Maybe it was the perfect time to say good-bye – I didn’t have to deal with an answer from him or look into his eyes and wonder if he even knew who I was.  

“I’m going home to get some clothes.  If you fall asleep before I get back, it’s okay, I have the key.  I know how to get in.”  And I was out the door.

Half my trip home was more NPR – then I put in some cd’s.  Natalie Maines summed it up best. 

These walls have eyes
Rows of photographs
And faces like mine
Who do we become
Without knowing where
We started from

It’s true I’m missing you
As I stand alone in your room

Everyday that will pass you by
Every name that you won’t recall
Everything that you made by hand
Everything that you know by heart

And I will try to connect
All the pieces you left
I will carry it on
And let you forget
And I’ll remember the years
When your mind was clear
How the laughter and life
Filled up this silent house…

Not to worry – there won’t be more songs…we have better things to talk about tomorrow!





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.





You me too too…that makes four of us!

14 08 2008

As if I were a brain injury patient working with a therapist, more and more I have to stop and consciously think about what day it is, what month we’re in and the actual date. I can’t fathom that I took Billy to the doctor just a little over a week ago and I was glad to get him oxygen. We’ve stepped onto some kind of cosmic slip ‘n slide and are tumbling through a wormhole between one dimension and another. Seconds become minutes, minutes become hours – days an eternity.

Others have arrived at my mom’s side – sitting shiva for the slipping. I’ve checked into a hotel – I need to be alone. I need to finish sorting through important documents and make sure I have my hands on things we’ll need very very soon. I need to be able to sleep when I want and be with total strangers not having to talk. Much has been done weeks, months ago – but some things yet to be tied up. Maybe I’m doing my own kind of separating. I have had my days spent along side his weakening body. But there are times that I can’t believe that certain things happened just 48 hours ago.

One of those restless days recently- when it seemed we couldn’t find our footing no matter how badly we tried – it was time for him to pretend to find a few fleeting minutes of rest in bed – he was going through the routine that had become frustratingly familiar. “Here’s my flashlight, there’s my water, and my snot rags…now I’m gonna scooch myself way back there in the corner against the wall and ….” I’d stand there, take a breath, and the cycle would start again…”Ok, that’s the light there I need if I get up, there’s my water bottle…” God’s clever sense of humor to revisit children with the torture they put parents through. When it came time for piano practice, I suddenly had a spring in my butt as soon as I’d sit on that bench. I’d be back getting one more thing, going to the bathroom, any other lame excuse to not get at the chore in front of me.

Well, I finally got him settled just so and as I paused to turn off the light, again going over with him that I’d leave the hall light on, I said, “I love you Daddy”…and the words tumbled out of the brain vault before they could get organized for delivery he said, “You me, too too, that makes four of us.” I cracked up.

Those little sayings and turns of phrase are things that each of us are clinging to as we feel like someone put vaseline on the base of our slip ‘n slide before the water was turned on. Each day we see him making a strange progress that is really loss – or is it if he’s farther through the wormhole and closer to the dimension where we find freedom and total gain?

There are so many things that I’m examining through this new reality and asking questions from a different place…and most are questions. I don’t want to hear your answers..I want to find my own answers. Maybe Billy was right after all and there were four of us there that night.





dog days

7 08 2008

Wiki sure got this one right by noting that in ancient Greece and Rome these days were believed to be an evil time “when the seas boiled, wine turned sour, dogs grew mad, and all creatures became languid, causing to man burning fevers, hysterics, and phrensies”. Could NOT have said it better myself. Today in a nutshell.

There was nobody, no how, no way gonna tell this man it was too hot to sit outside. I’d move him to the shade and turn my back and suddenly he was in the full sun. Handkerchief over his head, stuck in the corners of his glasses – and he claimed that shade. Period.

Not a Cubs game, not a full lunch NOTHING would glue that man’s backside to the recliner in the room where there is air conditioning and make him nap. Oh, he may come in to go to the bathroom at which time I almost physically force him to drink something.

But the lady had it right, watching out the window as much as I was to see him in full on sun…”I can’t tell him anything and what good does it do me to nag him to death?” He’s gonna go either from heat stroke or being nagged to death. It’s not that he hasn’t been told. It’s not that extensive games haven’t been played to convince him of what I know is safe and right…but today he is not going to be bossed. I would go with the greeks on this one and say he is a man possessed by “phrensies”.

So what’s the difference? If the man was 86, let’s say, and a farmer still working his fields unaware that he had a bad heart…would there be a way to have him sit in the shade all day twiddling his thumbs? Or if he sat indoors all day in an air conditioned casino playing the slots…is that smarter? The long and short of it is that most of Billy’s life has been snatched away from him…he can’t mow that grass, drive that car, stop at that garage sale, go to the grocery store 50 times in a day, he’s stuck. I am going on record saying I let him sit outside all day on a day when I don’t want to be anywhere else but on this couch in front of a fan. Who’s the wiser?





i found the perfect song…

6 08 2008

I found the perfect song for Papa to sing…and if you’ve ever been to Sunday School you too can sing along…

Deep and Wide

Deep and wide

Deep and wide

There’s a fountain flowing deep and wide

Deep and wide

Deep and wide

There’s a fountain flowing deep and wide

Hmmm and wide

Hmmm and wide

There’s a fountain flowing hmmm and wide

Hmmm and wide

Hmmm and wide

There’s a fountain flowing hmmm and wide

Hmmm and hmmm

Hmmm and hmmm

There’s a fountain flowing hmmm and hmmm

Hmmm and hmmm

Hmmm and hmmm

There’s a fountain flowing hmmm and hmmm

Hmmm and hmmm

Hmmm and hmmm

Hmmm hmmm hmmm hmmm flowing hmmm and hmmm

Hmmm and hmmm

Hmmm and hmmm

Hmmm hmmm hmmm hmmm flowing hmmm and hmmm

Hmmm hmmm hmmm

Hmmm hmmm hmmm

Hmmm hmmm hmmm hmmm hmmm hmmm hmmm hmmm

Hmmm hmmm hmmm

Hmmm hmmm hmmm

Hmmm hmmm hmmm hmmm hmmm hmmm hmmm hmmm