The Ravenous Bugblatter Beast of Traal, (not) at your service

I am reblogging this one. My wife spotted it as one of those “Facebook Memories” from 2013. In this piece, I note my own need for boundaries. I neglected this and in 2015 was laid out by anxiety and depression. 2016 was a year of healing and growth for me. Please, if you detect your own stress points as a caregiver, seek help. Pain is an important warning. God bless you.

Sometimes Care Giving Stinks

“…avoid the gaze of the Ravenous Bugblatter Beast of Traal (such a mind-bogglingly stupid animal, it assumes that if you can’t see it, it can’t see you)…” Douglas Adams, The Hitchhiker’s Guide to the Galaxy

I (Tim) made a mind-bogglingly stupid move this week. I was out grabbing lunch, when I noticed someone I knew at one of the tables. He was engaged in a conversation and didn’t see me. And I used that as an opportunity to scuttle to another part of the place where a wall would be between us. If I couldn’t see him, he couldn’t see me.

Now, this guy is pleasant. Funny, interesting, a good guy. But I didn’t want to interact. Not so much as to go by and say a quick “Hey.”

One of care giving’s side effects is to send my introversion off the charts. When I’m not doing all…

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Beer, bang, blood & BS

O, God, where to start retelling last night?

Got home from work in the late afternoon with two consecutive days off coming up. We had a fun Chinese pick up dinner; Joey downed his own weight in Lo Mein.

Melissa and I were settling in to binge watch something and I was so relaxed that I had a second beer.  Then a third.

Then, a floor shaking bang and noise  like the fusion of snoring, opera and a train going by.  Joey had a seizure.

It must have been abrupt because he usually senses them coming and gets to a couch.  This time he was down on the floor in his closet with his face shoved into the floor.  It was hard to get to him and we needed to make sure we could keep his airway open.

I’d just downed that third beer…

Melissa managed to wedge herself in with him, get a hand under his head and get his nose and mouth out of the carpet so he could breathe.

When she got her hand free, it was covered in blood.

As the seizure subsided, Joey began to rouse himself a bit and we were able to get him out of the closet and inspect his head.  There was running blood all over his left ear and we couldn’t tell if it was coming from an external cut or from inside of his head.

Melissa said, “We need to take him in,” meaning to the ER as it was evening, and she was right.  But I’d had three rapid beers and she was going to have to drive.

So we loaded up, her hair a mess and no makeup (that doesn’t bug me but she hates going out like that), Joey and I in shorts despite the winter temps.

I had the presence of mind to call the ER and let them know we were on the way and what had happened.

OK, OK, I need to back up just a bit so I can tell you about the BS.  As soon as we realized that we had to get to the hospital, Melissa had the insight that Joey gets combative after a seizure.  He just wants to sleep and doesn’t want to be poked, prodded, asked questions… it is like a man-cold on steroids.  He can get violent if pushed, no matter the pushers’ good intentions.

So she showed Joey her bloody hand and said, “Look, Joey, mommy has an owie.  I have to go to the doctor.  Will you help take mommy to the doctor?”

It worked.  She actually turned him into a caregiver, and, although we could see he’d rather do something else (hey, that’s a working definition of care giving, ain’t it?), he wanted to help mommy be OK.

This morning I realize that autism worked in our favor.  His older brother, the engineer, would have asked, “Hey, if mom’s injured, how come she has to drive?”  No such problem with Joey.

At the ER, Melissa quickly informed the staff of the BS story under which we were operating.  It was wonderful – all of them, from the receptionists, to the nurses, to the admitting clerk, to the doctor – adopted the line.  “So, what happened to you,” they asked Melissa, “and where are you hurt?”

Meanwhile, they convinced Joey that getting his blood pressure would be helpful to treating his Mom.

They very dramatically cleaned the blood off her hand so Joey could see mom getting fixed, then told him that some of the blood was on him and they needed to clean him up, too.

Thanks be to God, the bloody wound was an external abrasion.  No stitches, just some topical disinfectant and a day of rest (today) at home.

And, because of Melissa’s impromptu and epic BS, no combat.

No pics to share.  I wasn’t thinking of blog illustrations at the ER.

20170130_104531

So here’s one of last night’s empties and some morning coffee.  In a mug that Joey painted for me.

Trying to cancel a pity party

Care giving pushes a person toward their outer limits.  The repetition of unpleasant tasks and the human desire to receive as much or more than we give can make the caregiver sad, surly, stressed out or all of the above.

Throw in some of life’s normal irritations and it’s time for black confetti, diabolical tunes and spoiled snacks – a pity party.

A wise friend once advised me to get ahead of the onslaught by asking myself, “If I were the devil, what would I do to upset Tim?”  This week, it’s been an overload of all the life crud I’d rather not deal with;

  • Bureaucracy – got a call from the pharmacy that insurance was declining to refill our son’s array of medications, which include anti-seizure and anti-aggression chill pills.  So I had to dig through piles of forms that all look alike, call automated “customer service” numbers, hack my way to a live person who wouldn’t talk to me because of HIPPA (he, they’re my son’s meds, not mine), etc.  Hate doing this on my best day.  Got it fixed but it left me frazzled.
  • Money – I get to pay bills AND do taxes on my upcoming days off.  WooHOOO!  Yay, Me!!!!!
  • Conflict – part of my work has me representing my superiors to two dug in groups that refuse to resolve a conflict and keep trying to manipulate me to to choose between them.  My superiors simply want them to make up or get lost.  I don’t like delivering bad news; I’m a decent care giver because I’m flexible and it is not easy for me to be bossy; I like peace and hate being around people who’ve lost their rationality.  Today I get to call the two faction leaders and tell them, “You’ve exhausted the patience of my superiors.  You’re both gone.”  Even more delicious was the whole night anticipating these calls.

pathetic-7Pity parties make us passive and hapless.  The make us throw up our hands in woe and just let circumstances continue to crush us.  What to do?

  • Stop bundling the problems as one big mess.  Mentally separate them.  Take them one at a time.  They are not related.  They are not God’s wrath coming upon you.  And they will go away the sooner you stop pity partying and take them on one by one.  Don’t look at them all at once or the whole universe will look like your problem.  Give each one its time and place, curse it if you must, and then get down to dealing with it.
  • Delegate.  Can someone else help?  I just realized that someone else is going to see the feuding hard heads face to face before I do.  So, I will still make the bad news phone calls, but my colleague can deliver the formal letter from our superiors.  One less bit of stress and wasted time.  Don’t play the hero; accept offers of help or better yet, stop waiting for an offer and ask for it.
  • Practice spirituality.  Stuff that’s hard can be turned to your advantage.  As a follower of Jesus, I’m aware of the words  In all things I have shown you that by working hard in this way we must help the weak and remember the words of the Lord Jesus, how he himself said, ‘It is more blessed to give than to receive’  (Acts 20:35).  Yes, care giving is about giving more than you get back.  In our animal flesh, that’s a big negative, but in the mystery of the Spirit it’s a way to find blessing, that is, deep and abiding happiness.  So wrestle with the invisible possibilities instead of just slogging through the pathetic feelings.
  • Take your times of rest and recovery.  Sometimes this means just turning away from the problems when you’ve done what you can do.  Other times it means to celebrate because you’ve knocked something off the list.  Rewarding yourself for a victory will help you go out and win other battles.

I’m sure there’s more stuff to list but you know what?  I’m tired of thinking about it and I’m going to drink coffee and get those stupid phone calls out of the way.

Hope your weekend is good.  If you have a pity party planned, cancel it.

We’ll leave the light off for ya

People with autism connect with the world through repetitive behaviors.  I mean, we all do, right?  None of us want to live in a town where red light means stop on Tuesday and go on Wednesday.  I think.

But people with autism take repetition to the nth degree.  One of the the behaviors that led to our son Joey’s diagnosis was a daily pattern of running around the house, clockwise, pausing to touch certain objects in sequence along the way.  That’s a game a neurotypical kid might create, of course, but then a typical kid would lose interest and create a different game without having to be coaxed out of it by a therapeutic intervention.

20170121_085218One of Joey’s current repetitive behaviors is turning off our house’s outside lights.  It’s almost like he’s adopted a daily chore, which would be nice, except we can’t figure out the timing.  It’s irregular and sometimes inconvenient.  Why he’s even aware of those lights is a mystery, since they don’t glow into the window or anything.  But he’s taken to turning them off, sometimes while waiting for his morning bus, sometimes when he gets up to get a drink at night, sometimes in a cantankerous little gesture just after we’ve turned them on.

Joey’s repetitive behaviors create repetitive behaviors in his caregivers.  Now my wife and I have to check the light switch every time we go by at night.

Today is Saturday, and the whole family engages in a big repetitive behavior based on Joey’s imposed pattern of glazed doughnut with chocolate milk.  It means I have to get up earlier than I want, including on bitter winter days; the dog expects a car ride to the market; Melissa has to go on seizure watch while I’m out, during which the cat nags her for a brushing.  This pattern, almost down to a minute by minute precision, has been in place for years.  All because Joey is happy with his doughnut and “off” – possibly to the point of a seizure – for the rest of the day if it doesn’t show up.

When I got back from the market, I knew that Joey was awake.  How?  Not because there was a light on in his bedroom window, but because the lights in the driveway were off.

These repetitive behaviors can infest the care giving family in a couple of ways.  Obviously, they can become a grind.  Or, they can become cute and sentimental, preserving the feeling of caring for a child long past childhood.  This can create a void when the person with autism moves out, as Joey might at any time.

Then you have husband, wife, cat and dog all staring at one another wondering what to do.  Care giving can create some patterns of relationship, but it can also make those a facade ready to collapse when the person receiving care leaves the pattern.

Care giving is a consuming, sacrificial act of love.  But we have to be careful not to dramatize it or sentimentalize it, because it can take over too much of reality like some kind of idol.

One of the ways I resist that is to have my own @^%*#@$ repetitive patterns that aren’t tied to care giving.  I read during my lunch hour at work, for example.  This week, I got something worth sharing.  Hope it helps where you are:

We fill in the center with something or someone and ask it to be the fulfillment of all our desires.  We attempt to quench our thirst for the infinite with something finite.  When this happens, we terribly distort whatever it is we are asking to be our god.  No one, and nothing, can bear that responsibility and so we begin to squeeze the life out of our loves.  And we die, too, because we need the nourishment only God can give.  A lesser god means a lesser self.  (John Welch, O. Carm., The Carmelite Way)

RED LETTER DAY

I HAVE NO FREAKING IDEA WHAT A RED LETTER DAY IS BUT I’M TYPING IN BOLD, RED CAPS TO CONVEY THE ANGER WITH WHICH I WOKE UP ON SATURDAY.

IT WAS THAT FREE FLOATING ANGER ABOUT ANY AND EVERYTHING.  IF YOU’RE A CAREGIVER YOU’VE PROBABLY HAD IT; IF YOU KNOW A CAREGIVER AND THEY SEEM CRANKY FOR NO “GOOD” REASON, YOU’RE PROBABLY WITNESSING AN EPISODE.

ON FRIDAY NIGHT MY WIFE FOUND AN EXCELLENT SERIES TO BINGE WATCH.  I WAS REALLY ENJOYING IT BUT OUR SON STARTED HAVING “NEEDS.”  HIS BED NEEDED CHANGING.  THEN HE DIDN’T LIKE THE TEXTURE OF THE NEW BED SHEET AND WANTED A DIFFERENT ONE.  AND THEN AND THEN AND THEN…

AS A MALE INTROVERT, THE MOST UNSETTLING THING THAT CAN HAPPEN IS TO BE RIPPED OUT OF MY THOUGHTS AND ENJOYMENTS.  I WAS REALLY ENJOYING THE SERIES WITH MY WIFE, REALLY ABSORBED IN THE ACTING AND THE COMPLEX STORY.  TO KEEP GETTING YANKED INTO CARE GIVING MODE PUT ME OVER AN EDGE.

OK, OK the flaming is annoying me, too.  Enough.

I try to avoid posts on “How to Be a Great Caregiver” but I hope a few insights from my day are useful to someone out there.  What to do with that free floating anger?

  • Count to 10 and then multiply.  Deep breathing, slow counting, something, anything to help your mind regain perspective over your overwrought system.  A good therapist taught me to see negative emotions as waves – they are strong and scary but they peak and subside pretty fast.
  • It sounds cheesy but “accept that it’s just a feeling.”  Most caregivers get overworked and some nasty feelings tends to hang around.  Tell yourself something boring and objective like, “OK, I’m in a bad mood” and get on with the day.
  • Do something you enjoy.  If you’re an introvert, you need to assert a claim to some private time so you can read, ponder or whatever.  If you’re an extrovert, you need to be with others whose energy refreshes you.  NOTE:  I don’t mean have a booty call or affair.  Think about it, please.  If you are overwhelmed by the needs of someone in your care, do you really need to open another potentially insane, needy relationship?  Plus it’s just plain wrong.
  • Pray, if you are a person of faith.  Learn to pray in ways that aren’t just supplications for God to fix this or that, but are times to focus upon and enjoy the greatness and goodness of God.  I started my morning prayers ANGRY and finished someplace near sane.
  • People without a faith orientation might describe the above as “getting out of yourself.”  So go outside, gaze on a breathtaking feature of the landscape, engage in an absorbing activity (somewhere you can’t be interrupted!!!!!), do strenuous physical work or some other something that doesn’t let you stew on you.

Hope this helps.  Blessings on what’s left of your weekend and on the week to come, my brothers and sisters.  Now I gotta go Google “Red Letter Day.”  No idea what that is.

“Could be worse”

That saying is too often dropped on a person when they are in pain.

I mean, how often does it really result in, Wow, you’re so right.  Because you said that, my hurt just went away and I feel all better!

Guys (literally, guys for this illustration), did that gorgeous stranger ever jump into your car because you yelled Hey, baby, you fine! out the window?

Could be worse is like that.  Tends to be counter productive.

I was musing on it last night.  My son with autism went with me to a fund raising dinner for a family who’d lost a young man in a construction accident.

joe-eating-ice-creamHere’s my son eating ice cream at the event.  He didn’t like the volume of the loud band, so we made a contribution, said a few passing hellos, ate and left.

I sat grieving the loss of social normalcy in our family.  We couldn’t visit with friends, ask if so-and-so was there or any other normal stuff because our son needs us close at hand and his needs control much of what we can and can’t do.  I was able to give the deceased’s mom a quick hug but couldn’t really spend time with the mourners.

And of course Could be worse played in my head, louder than the band.

Our son isn’t dead, after all.  We have him to enjoy in so many ways, even with all the crud that autism brings.

But one of the struggles for caregivers is prolonged grief…

Grief for lost dreams, when a child’s disability wipes out traditional expectations;

Grief for lost intimacy when a spouse’s or partner’s illness takes it away;

Grief for loss of golden years when something like Alzheimer’s annihilates connection and shared memories;

Grief for… fill in the blank with one of many living losses caregivers experience.

Sure, could be worse.  But it is real, even when one holds all the relative losses in perspective.

grief-meme

From lessonslearnedinlife.com

We’re all the wilderness together, as the old graveside prayer reminds us…

In the midst of life we are in death

The Aftermath of Disasters

Melissa is feeling beat up today.

I was invited out last night and she stayed in with Joey.  Disaster struck twice.

First, a dinosaur attacked.

Our 22-year old son with autism took a fancy to this on his internet surfing, and played it over and over at high volume.

This is the guy who can’t help with chores or muster the fine motor skill to sign a thank you note without hand over hand help. But he can find, play and replay videos on the internet. And adjust the volume. Mainly up.

After the dinosaur attack, there was a tragedy at sea,

Yes, it was a concert for the ages as Barney was just an opening act for Celine. Vegas can’t top this. Jurassic World and Titanic as a double feature? And thanks to Joey’s computer skills Melissa got a few hours of both in Dolby high def.

Needless to say, Melissa was worn out by the time I got home. And today she’s had a nasty headache. I had the day off and we had plans to go out but the Monday night mayhem scrubbed all that.

Caregivers are happy when those in our care find simple things to enjoy. But as we say in our book,

It is a short step from “Thank God I’ve found something he likes,” to “Please, God, make him stop bugging me about that.”