Only human

Just caught a short, brutally honest article from the perspective of caring for a person with dementia or Alzheimer’s.

In Caregivers Are Only Human, Rick Phelps writes,

frayed rope

Image from the linked article.

Everyone loses their temper once in a while. People say things to each other that they don’t mean under far less stressful situations. Caregivers are under an incredible amount of pressure, and they are not immune to letting their emotions get the best of them. Dementia adds yet another challenge to the mix.

There are several comments at the article that are worth reading as well.

In Raising a Child With Autism, I describe an ice storm that clobbered our town a few years ago.  The aftermath of that mess serves as an image for caregiver breakdown,

Sometimes physically, but more often emotionally, caregivers sag like ice-burdened trees. We wonder if our groaning means we’re bending with the effort or if it’s the prelude to falling down.

All relationships – not just care giving situations – can take us to our limits and show us at our worst.  As author Anne Kennedy reminds us with a recurring chapter heading in her book for “angry or worn out people,” You Still Can’t Do It.

Which is why care giving or just plain ol’ family life can be the door to discovering the unearned, undeserved favor of a loving and very patient God.

Isolation

The first book signing for Raising a Child With Autism is history, but this isn’t about the book.  It is about the people who stopped to talk at the display table and others who’ve been in touch via the internet.  My prayer list keeps growing with their names and needs.

One man took a break from his job down the street from the bookstore to come in and describe his family’s unique challenges.  They care for a son with autism.

We noticed that people stopped inviting us to stuff.  I think they’re afraid of our kid.  My wife is at home alone with him more and more.  She’s really feeling isolated.

All kinds of care givers suffer in similar situations.  People don’t invite you out or you find it too much of a hassle to go.  Competent babysitters or respite providers are hard to find.  The person in your care is agitated if you go out on your own, but resists going along when invited.

Many Christians will hear a familiar Bible lesson on an upcoming Sunday in Easter season.  It begins with people in isolation,

2012-12-22_09-13-56_966When it was evening on that day, the first day of the week, and the doors of the house where the disciples had met were locked for fear…

But the locked door is as powerless against what happens next as, well, our bedroom door when our son Joseph wants to bust in about something.

Although the doors were shut, Jesus came and stood among them and said, “Peace be with you.”

We weren’t able to attend an Easter service.  I had to work and Melissa had to – did you guess? – be home with Joe.  Yet Easter isn’t less Easter to us, because of the one who burst the isolation of his tomb and, by his Spirit, reaches into the isolation that afflicts the human race.

There’s no easy set of “steps” to make this happen, much as I’d like to bottle and sell such a formula.  But I suppose it begins like most efforts to end isolation, with a conversation,

And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”

We are blessed this Easter.  Although we couldn’t be in church, we will soon have dinner with friends who love Joey and welcome him into their home.

We are grateful to all who read what we share, who leave messages and otherwise communicate with us.  You have been part of God’s response when we’ve asked, sought and knocked – you help deliver us from isolation.

May God’s peace be always with you.

Because it stinks…

air freshener

Image found here.

…caregivers have some capacity to freshen the stinkiness in others’ lives (and thereby in our own).

I think that our experiences can give us compassion for others’ struggles, even those not tied to care giving.

Here’s a positive review of our book, which notes that it can reach into situations that are not just like ours:

This is a most amazing book. The writing is phenomenal. Each chapter is divided into three parts, and each connected to “gardening or growing something”. This book is like a meditation and it does not just relate to raising a child with autism, it can apply to any difficulty, one might be going through. It even relates to just life itself. I have given this book to many people and all have loved it. The depth of this small book will amaze you.

I think we can fight off pity parties (OK, sometimes) by getting out of ourselves and helping others with different challenges.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.  For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.  (2 Corinthians 1:3-5)

 

Why did I write that book?

The truth is going to sound wacky, pompous and neurotic.

But I’ll lead with the truth and then list some more palatable stuff.

The truth is that I was in the park with our son, Joey, who lives with autism.  His slightly older, neurotypical (aka “normal” or at least NOT living with autism) brother had just driven away to start college.  I was praying, which was easy as it was a gorgeous day.  Obviously, my heart was full – memories of the kids over the years, hopes for what would come – so I was pouring that kind of stuff out to God.

Not audibly, mind you.  The other parents were not telling their kids, “Honey, come over here, away from that strange man.”

And just as surely as I was speaking to God, God spoke back, not in a audible voice (I’m only neurotic, not psychotic yet), but in a thought that flooded my mind and overflowed into my heart: You can write a book that helps other family caregivers.

I knew right away that I would be writing in the midst of care giving, not from past experience.  The book would never be The Five Essential Habits of Excellent Caregivers or something like that.  Rather,

  • I wrote it so that people confined by the demands of care giving would find companionship, at least in the stories I tell but hopefully beyond them in the divine, “patient gardener” who has helped me beyond what I could ask or imagine;
  • I wrote it so that stressed out people could laugh.  You have to find the humor, dark though it might be, to keep going as a caregiver.
  • I wrote it to process my own inner stuff.  As I said, I wrote it while care giving, not after.  And so it was a combination of meditation and therapy for me as much as for any potential reader.
  • I wrote it because I enjoy writing.  It is a gift I have to share and, frankly, I communicate better through writing than any other means.  Well, except yelling or crying and stuff like that.

Ortt book and icon

 

A long time friend shared this lovely pic of the book on a desk where he studies and prays.  I pray and hope that this little book serves God by helping family caregivers in the depths of their hearts.

 

Empty cart, not yet empty nest

shopping-cartI couldn’t resist having fun with the sign on this shopping cart.  I Instagramed (is that the verb?) it, with a caption about how I wasn’t getting any children anyway since I was fasting for Ash Wednesday.

Humor is an important ally to the caregiver.  It is a tension cutter.  Much of our humor is dark, but then so are the situations that generate it.

In recent months it’s been harder for Melissa and me to laugh at some of the quirks of Joey’s autism.  His video watching becomes intrusive noise; I don’t think he’s turned up the volume but our annoyed ears seem to think he has.

The chores of his daily routines – chores we do for him, let me be clear, not chores he does – are not a terrible effort yet they are numbing.  Not demanding physically, but draining psychically.

His non-cooperative behaviors get under our skin more.

We have more wistful conversations about being empty nest, about having the house and the time to ourselves for the first time in forever.  And so we wait for Joey’s group home placement, still loving him and wanting all to be well in his life yet feeling the limits of our own aging and of the two decades dominated by autism.

And that’s followed by a mist of fear that we’ll be staring at each other across a great emptiness wondering, OK, now what do we do?

Speaking of aging, I guess that entitles me to repeat stuff I’ve probably said before but can’t remember if I did.  So, let me say (again) that one way to describe raising a child with autism is to ask parents of typical kids to remember the sleepless nights and all the stuff that went with a new baby – the stuff that in hindsight becomes a source of humorous memories.  Now imagine that much of that stuff never developed into self sufficient adulthood and you kept doing it for five years, then ten, then twenty.  Not so funny anymore.

Remember that you are dust, and to dust you shall return, is what we say on Ash Wednesday.  Indeed, care giving exposes every pathetic evidence of sin and fatal separation from God – every bit of selfishness, the limits of love, the capacity for self pity and resentment, the instinct to blame… all of the ungodly feelings, thoughts and emotions in service of the world, the flesh and the devil.

If we are fortunate, it becomes the great weakness that throws us upon the grace of a loving God, who gives us power to live in ways we never imagined,

Three times I appealed to the Lord about this, that it would leave me, but he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong. (2 Corinthians 12:8-10)

…when such a thing happens…

Everyone reading this book – indeed, every human being – needs to know that when such a thing happens, we are not alone.  Victor Lee Austin, Losing Susan, Brazos Press 2016.

If you are a family care giver, or if you know one, Victor’s book (and it really turns out to be his late wife Susan’s book just as much) can be at once a splash of cold water that wakes you up and a strong arm around you for comfort.

20170206_141154He tells the story of his wife’s long terminal illness and his efforts to care for her with great love and humility in a pure sense of that word, by simply being objective and not forcing any judgments.  Some questions are left hanging, and this book gets across how normal and necessary that is.  No tidy answers to the big questions, but great insight into family care giving and a gift of compassionate companionship for those who are caregivers.

Just as many combat veterans need others who’ve been in battle to process what’s happened in their lives, care givers will find in Victor and Losing Susan a level of understanding and acceptance that helps process uncomfortable emotions and experiences.

Reading this is a reminder that care giving thrusts orderly souls like Victor’s into chaos, free spirits into stifling routines, thoughtful people into impulsive action, rational people into irrational situations, spontaneous people into detailed planning, extroverts into isolation and introverts into a land of disintegrating boundaries.  And what’s worse is that this all involves the loss of the person most a part of us and most able to buffer us in life’s hardships.

As I read this book, I was struck by how much I would like to see couples read it while preparing for marriage.  God forbid that they should have to walk the same course as Victor and Susan, but they will walk some part of it.  This book, by telling a family story rather than framing a lecture, brings out the deep reality of

In the Name of God, I take you to be my wife (to be my husband), to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, until we are parted by death. This is my solemn vow.  (Book of Common Prayer, 1979)

That kind of promise will take us into situations for which we are radically unprepared and, in all honesty, incompetent.  As Victor describes so well,

I never had any confidence about how much I should push or encourage her and how much I should step back and just let her be.

I’ve talked to a lot of people who have to care for others whom they love, and we always recognize this point of commonality.

This common lack is why care giving can’t be pulled off all on one’s own.  We need companions and, if we can recognize it, we need God’s grace.  Losing Susan is a voice for both.

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.

Out with… with… I forget

So here comes the obligatory New Year’s post.  Although I think I neglected the compulsory Christmas post so I’ll cram them together.

Joey begins perseverating about Christmas presents – aka movies on VHS – in the summer.  We get mad and try to make him change the subject; Melissa makes him dictate a written list so at least some constructive interaction takes place; our eyes roll back in our heads…

presentsThen Christmas day comes, we wake him up for breakfast and presents, show him his loot ‘neath the tree, and he says…

“NO!!!!!”

and goes back to his room.

We eventually prevail upon him to open the gifts, which he does with grumpy histrionics before again retreating to his room without them.

Eventually, over several days, he begins watching his long desired movies and seems happy.

Well, this year we resolved (see that New Year’s hook?) to try a new approach, which was no approach at all.  We simply let him ignore the presents to see where his thought process would take him.  We offered them to him and then left them under the tree and waited.

Our older son and his wife flew in for the holiday, and we exchanged gifts with them a few nights after Christmas.  Joey seemed to get into the second gathering and opened his presents then.

Hypotheses include a) he wanted his brother there, although he did the whole “NO” schtick throughout the years his brother lived at home; b) he doesn’t want Christmas to come to a crashing end but wants to sustain the gift getting pleasure; c) oh, hell, I have no idea.

Here it is New Year’s Eve-day and I’m sitting here yelling at him to turn down the volume on the movies, which he’s enjoying.

I’m not big into resolutions.  But here’s a favorite scene that reminds me to be open to change, to quit pounding my head against autism or any other wall…

May 2017 bring you blessings, especially freedom from old ruts. May you have divine favor upon all that you offer.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come. (2 Corinthians 5:17 ESV)