Did we mention it STINKS?!?!?!?!

Today it is sunny and in the 70s. Spring here is gorgeous and oh so welcome, because less than two weeks ago we had this:

2013-04-18_12-41-15_986

Since then, the city sent skip loaders to haul away all of that heavy tree debris from the curb. The sun melted the snow. Saturday looked good for raking the twigs out of the lawn and getting the yard back to normal.

2013-04-27_12-25-36_148It turned out to be a bigger job than expected. Hours of raking and worst of all the stoop labor of getting all the crud into paper yard waste bags, which either fold up and refuse to take the junk you’re putting in them or rip apart once you get it in.

2013-04-27_12-25-17_843 Of course the interminable winter, the ice storm and the falling trees didn’t keep the first weed from showing up.–>

2013-04-27_12-25-49_681 <–I filled eight bags with the stuff. Raking the planter beds meant rocks followed the twigs, and had to be picked out of the piles and thrown back. Stoop, stoop, stoop. I think back to my younger days in California, and remember a big fight to ban the short handled hoe and other tools that forced farm workers to ruin their backs.

Anyway, the job's done. I've stretched, taken a warm shower and some Ibuprofin.

Know what hurts? I'm a middle aged dad with a relatively healthy 19 year old son who's sitting in the house watching movies while I twist and compress my aging parts. One of the rewards of middle age dadhood should be the slave labor of a teen son. But the autistic guy won't put on work gloves due to his sensory issues. If he wore them, he could pick up the debris but he’d never get it into bags. I’d wind up having to rake and pick up all over again.

Meanwhile, Melissa can’t sit out in the sun and enjoy this blessed weather because if I’m out playing pick-up-sticks, she has to be in the house to watch the lad.

How doth care giving stinks? Let me count the ways.

Out-kicking your coverage

Sure, I felt like bringing in a football term in this long, bleak, no-football season.

Of course the joke is on me because “out-kicking your coverage” now means “dating someone waaay too good looking for your mediocre self.” But I’m going to stick with the old football usage for this post.

A178744_000A_1Out-kicking your coverage is about your strength working against you. It is when a place kicker or punter blasts the ball so far that the receiving team has time to field it and set up strong blocking before the kicker’s team can get there to make a tackle. It can result in the other team taking your big ol’ kick back a long way in your direction, maybe even into your end zone for six. (Yeah, I know, I know, I’m desperate for football).

But here comes the care giving part. I gave a sweet lady a ride home from church on Sunday. She’s in her high 90s. Other than some absent mindedness she’s still sharp, with a great wit that lets her goof on people. She’s always well groomed. And, unless she’s going for a very long stroll, she doesn’t bother with her walker… she just goes with her almost-100-year-old legs.

But she lamented how she’s outlived everybody close. Husband, siblings, close friends. She lives in an adult community that has skilled nurses, so she has professional care givers 24/7. But not the folks who’ve shared her decades of life, who have personal, precious memories to laugh about with her, who could live right there in her apartment with her as part of her. None of those care givers remain.

It’s a strange thing to think on. You can be so strong that you “out-kick your coverage.” Like a punter who put in too much leg, you’re suddenly facing the oncoming stuff all alone.

Worries me a bit, I have to say. I’m one of those people who Melissa describes as “hardy.” My health tends to be pretty good, and I don’t have any of the super bad habits that would change that. Heck, I had the obligatory GI scope, and they told me not to bother coming back for another 10 years.

Now that should be awesome news. But after that little Sunday drive, it has me thinking.

A good measure

This weekend, I (Tim) needed care. I wasn’t sick. Well, heartsick maybe. Workplace crud had me down.

Melissa listened. She let me vent the mood, and checked in with me later that night asked if I was doing better.

Joey was in a perky mood and kept me laughing. Empathy is not the strong suit of the autistic, so he wasn’t saying entertaining things just because dad was down. But he helped in his own way, just being Joey.

This shouldn’t be a surprise. I think it is God’s design that some precious return comes back from what we invest in others. Those in our care turn around and take care of us in some unexpected ways.

Teaching about mercy, Jesus said,

“…give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.” (Luke 6:38)

When we garden, we dig around in dirt and spread stinky fertilizer, sometimes on hot, nasty days. We get sunburned necks. We aggravate our joints and all the little muscles that never get used except when we garden.

Then the flowers, seemingly without effort, give us their color and fragrance; our fruits and veggies give us flavor and satisfaction. Good measure, filling our gardens, baskets and kitchens.

No, our flowers, fruits and veggies don’t mow the lawn or rake and bag the autumn leaves. What they give back to us isn’t exactly what we give to them. But we come out pretty darn well on the exchange.

Joey doesn’t do housework; Melissa does some that her condition allows. But there’s care giving effort they put into me that is the “good measure.” When stuff has me down, the two people in my care are my care givers.

They’re the ones who can kneel down and nurture something fruitful in the muck of my soul.

It’s my party…

Today is Melissa’s birthday.

There’s an art to celebrating birthdays here.  Joey’s take is that any day where one person gets presents should include presents for all.  Christmas is his reference point.

2013-02-25_19-30-47_612Well, actually, Joey is Joey’s reference point.  He’s never protested that everybody else should get presents on his birthday.  He only enforces the “Presents for all!” rule on days when he’s not entitled to a gift.  Like Melissa’s birthday.

“Autism” comes from the Greek root “autos,” or self.  Autistic people not only march to a different drummer, they are the drummer and the drum.  And their relentless thumping can make others move to their beat.

Like much else with our Joey, things improve with age.  Today, he gets a bit grumpy if he’s not getting presents with the actual birthday boy or girl.  Used to be he would melt down and throw things or hit people.  So we’re thankful.

Tonight we’ll meet up with some friends at a hibachi place for Melissa’s birthday dinner.  Joey will be entertained by the theatrics of the playful cook, and will like the food, so it stands to be a good time had by all.

But see how Joey takes over?  It’s Melissa’s birthday, and I’m blogging about our efforts to make it work for Joey.  Ah, care giving.  The party never ends.

Happy birthday, Melissa!

Assessing ice storm damage (figuratively, of course)

2013-04-13_16-17-28_95So here we are with iron-gray skies and icicles in mid-April.

But that’s just a care giving subplot.

The real story was our autistic kid dealing with all kinds of storm generated stuff.

  • A power outage for the better part of one day.  No VCR.  No heat as the day wore on.  No light in the bathroom.
  • His computer went down days before the storm.  Despite the valiant efforts of an I.T. friend, it’s a goner.  So even with the power restored, no computer for surfing YouTube.
  • Sioux Falls was hit so hard that Joey’s day program was closed all week.  No paratransit, no program, just a week of cabin fever.2013-04-13_16-17-38_201

The debris in the yard never became our primary concern.  We were worried about how Joey would fare.

Lo and behold, he fared well.  He was bored and fidgety much of the time.  So were we.  He hung out with us, chit chatted, watched videos in lieu of YouTube, and never came near a meltdown or seizure.  He never got aggressive.  Clingy and needy sometimes, but that’s kind of sweet.

On Sunday, his day program held their annual pancake brunch fundraiser.  All three of us went (for Melissa and Joey, their first times out of the house in about a week).  Joey ate his whole stack – neatly.

I.T. guy brought him a rebuilt computer, so YouTube is back on tap.

Joey is complaining because his day program is back in session, but that’s hardly autism.  That’s anybody who complains about another day at school or work.

So on the whole, we are seeing very little of the damage we feared most from the ice storm.  Thanks be to God.

A solemn thought about care giving and civilization

This is a bit out of the blue and off the wall.  But then so is care giving.

Last week, specifically April 11th, marked the 50th anniversary of the opening of Israel’s trial of Adolf Eichmann. He was a leader in Nazi Germany’s efforts to exterminate those it dubbed “subhumans” and replace them with a “master race.”

The main targets of this great evil were the Jewish people of Europe.  But as the United States Holocaust Memorial Museum notes,

On July 14, 1933, the Nazi government instituted the “Law for the Prevention of Progeny with Hereditary Diseases.” This law, one of the first steps taken by the Nazis toward their goal of creating an Aryan “master race,” called for the sterilization of all persons who suffered from diseases considered hereditary, such as mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism. With the law’s passage the Third Reich also stepped up its propaganda against people with disabilities, regularly labeling them “life unworthy of life” or “useless eaters” and highlighting their burden upon society.

One of the greatest evils of human history included efforts to eliminate the kinds of people we care for.

Care givers defend one of many lines between civilization and savagery.  A society that encourages and honors the care of members who can’t care for themselves is – is what? – more advanced, nobler, holier or just plain better than a bunch of people who allow the “healthy” and strong to dispose of those considered weak and “useless.”

You might not feel like you’re making a big contribution to society.  But we’ve seen the opposite take place within the lifetimes of people we know – within the generation of Melissa’s and my parents.  What you do is part of the difference between good and evil at loose in the world.  God bless you for it.

What a rip off

And here’s another stinky dang life rip off, courtesy of care giving.

We just had a major winter storm here.  In April.  Yeah, that stinks, but that’s not care giving’s fault.

Ice formed on trees and caused big branches to break off and fall all over the place.  Also stinks, but not care giving’s fault.

2013-04-09_12-29-45_594Here’s what’s care giving’s fault.  I have a reasonably health 19 year old guy in my house.  He’s autistic and he can’t help me with stuff like getting those branches off of my roof, out of my walk way and somewhat clear of my driveway.

Got to do that all by myself.  With a hatchet.  This stuff happens so seldom in the city that I’ve never bothered to buy a chainsaw or other appropriate tool.

I’m tired and sore.  With a physically healthy 19 year old male in my house watching movies.  Isn’t the slave labor of sons one of the rewards of being a dad?

Not in the long winter of care giving, it ain’t.  What a rip off.

What can we do about the deficit?

Nah, not the federal or state budget follies.

I mean the emotion and energy deficits that care givers run.  What I call the fun deficit, where duties and demands outweigh life’s simple rewards.

Some care givers are at home all day, imprisoned just as much as those in their care, doing and doing and giving and giving and, uh, being-responsible-for-everything and being-responsible-for-everything.

Many of us, probably most of us,  spend chunks of time out in the workplace, which also calls on us to do and give and be-responsible-for-at-least-something.

The workplace can be a kind of respite for care givers, of course.  A place of order and boundaries that provides a break from chaos.  A place of not-so-demanding human contact that actually restores some of our energy and emotion.

It can be a drain, too.  A place where pressure is piled on and takes out what little emotion we have left.  In some cases, the work environment stinks as much as the care giving environment.  But the income and benefits, if available, are essential to the well being of those in our care.  Our options to quit and search for more satisfying work are limited, and in the present lousy job market “limited” is on steroids.

Leadership coach Dave Kraft raises some good questions about work:

Do you accept your lot, even though you may not always like your lot?  Are you thankful that you have work to do?  Do you rejoice in your toil, your work, or do you resent it and belong to the TGIF crowd?

Today I’m finding myself resentful of work.  I am thankful for income that meets our needs, especially in the spooky economy that’s out and about, but resentful of unpleasant,  unfulfilling workplace “stuff” that has me way over in “fun deficit.”  Life’s simple satisfactions are in short supply.  The world seems pushy, demanding and needy all the time.

And TGIF?  “F” is always in question for care givers.  You never know what you’re coming home to handle.  Sensing my “fun deficit,” Melissa’s made it a point to give me some peace and quiet and a bit of extra sleep the last few days, but today we have a sick kid on our hands and all the nagging chores that should have passed from our lives years ago.

The fun deficit can sneak up on any hard working person, care giver or not.  We all have demanding seasons.  But care giving seems to make it chronic.  And I’m resenting it big time today.  I would dump at least one of my two jobs right now if I could do it without depriving my family of necessities.

But like one of my long ago Army pals used to say, “I would if I could, but I can’t so I won’t.”

 

Then Again, Again…Reflections of a Zombie Mom

In the last post, Tim wrote:

“You can be an emotional punching bag. Or you can shut off the love and be a zombie, I suppose. Is there some sane place in between?”

On the day this post was written, I was first the emotional punching bag.  Then, I became “the zombie.”

I was with Joey in the car, returning home from his afternoon program.  He knew that he had not listened to me earlier by walking out of the building without waiting while I was trying to find his sweater, even though I’d called out to him several times to “wait”, to “stop” to “stay inside.”

When we got into the car, I told him that I was going to play some music that he would like.  I knew that he would like Adele, but he continued to reach over and turn off the “radio” without listening.  I put it back on.  On and off, over and over, until he changed his mind and smacked me in the face, knocking my glasses off.  (Fortunately, I do not need them to see distance!)  He knows the drill:  just ask.

I raised my voice, just a bit, but angrily, and said “You do not hit Mom.”  During the rest of the 10 minute drive home, I did not speak to him and kept a serious face.  I was “the zombie.”

He tried to make up.  He said “Do not hit Mom.”  He even put the CD back on but the sound was too loud and I immediately turned it off.  He said “It is too loud.”  I know that he was trying to make-up but here is was problem by then:

We were in the car.  His emotions were still high.  Once he hits someone, he is  likely to hit again.  I just wanted to get home.  Knowing how his temper can accelerate, I was afraid.  If he said he was sorry I would have known that he would have calmed down sufficiently.  This was a potentially dangerous situation, particularly because we were in traffic.

When we got home, I closed the garage door before getting out of the car and started into the house.  Joey did not move.  I told him that he could get out of the car.  Three times, gently.  He came inside but did not bring his things so I had to ask him several times before he would go back out and get them.  He backed away from me instead.  I am not sure why as he had hit me, not the other way around.

After I asked him to put his things away he realized that the incident was over and I gave him a kiss on the cheek and all of his teeth showed when he smiled.  He sat on the sofa with me for awhile instead of going into his room.  We had a delightful evening and the next morning he remembered it and reminded me that “I’m a good boy” with many hugs.

I “zombied-out” in the car.  Between the potential danger and the fact that Joey knew better, I had no desire to deal with it.

I am sure that the perfect parent would have responded with delight when he made the effort to comply by putting the CD back on.  You may, on occasion, call me “Zombie Mom.”

Then again…

Tuesday’s post was a celebration of our autistic son’s ability to stay calm and positive in the face of an unexpected and unpleasant change.

But yesterday morning he got angry for no apparent reason.  We were doing the morning hand off, with Tim getting ready to leave for work and Melissa sitting with Joey to wait for his paratransit ride.  It’s normally one of Joey’s happy times.  Dad goes off to work and Joey gets some warm time with Mom.

All of a sudden, Joey began throwing our pleasant farewell words back at us in a deep, malevolent voice.  He tensed up and resisted getting into his jacket.  And Mom & Dad went from morning calm to stomachs in knots.

The reality of care giving is frequent emotional agitation and drain.

As one friend describes it,

“It’s like you’ve got this little bit of water down at the bottom of your well and they’re down there putting in a drain.”

A wife who is care giver to her husband writes that he stormed off mad and leaves our home in our truck w/o telling me…”

Here’s one caregiver’s Facebook status, Gettin’ the silent treatment right now.”

And here’s another, He told me to go f** myself and left the room. As a result, got to sleep about 1. He came back to the bedroom at 6am. Aaargh.”

The physical and financial demands of care giving aren’t always the biggest strain.  Many of us have to guard against serving as the emotional punching bags for those in our care.  It’s a tricky business, because they are people coping with pain and challenges they can’t fix.  They’re people we love and we can’t just turn that off – and even if we could, who wants to live in an emotionally frozen home?

We have to find that elusive in-between place to stand; loving enough to be vulnerable, but not so vulnerable as to be emotionally beaten to a pulp.