No respite, no completion?

Most of what we blog here is about the current stresses and strains of care giving.

This morning I blundered into an article that shows how it can clobber our future.

The sandwich generation — those who have children and at least one living parent — is having a hard time saving for retirement because they are spending a good percentage of their money taking care of family members.

The steady flow of emergencies (they’re often the normal state of things) generated by care giving can lead to job loss or change and the temptation to cash out retirement savings for quick cash,

As of May 22, approximately $26.3 billion in total savings has been cashed out of the retirement system this year, according to the National Retirement Savings Cash-Out Clock. If nothing is done to stem the outflow, this cash-out “leakage” of assets from the retirement system will reach $68 billion by year-end.

This is a major financial health crisis affecting millions of Americans — and industry research indicates that younger workers in the lowest income brackets, as well as women and minorities, are at the highest risk of cashing out. Confronting this crisis requires a concerted, unified effort by plan sponsors and record-keepers to create conditions that facilitate seamless plan-to-plan asset portability for all participants.

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Sure, piggy banks are traditional, but who’s gonna rob a sharky bank?

The article offers some good suggestions, both for caregivers and for their employers. Go have a look – it’s not all gloom and doom but it calls for some work.

And ain’t that just what care giving is all about?

Not Fabio but he’ll do

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After all my work to get in shape, this cover was rejected.  Dang, wish I’d a thunk up that title, though!

The cover design credit for Raising a Child with Autism goes to Elaina Lee, who worked with our publisher on the concept.

Our initial suggestion was that the cover be more cartoonish and humorous – maybe a confused guy holding a leaky hose over a withered plant.  Our working title was Blooming Idiots, intended to reflect the on-the-job, trial and error (lots of error) learning  that comes through care giving.

But our publisher had a wise insight as release date drew near: Can you imagine a Facebook status or tweet something like, “Just read a #book about #autism called Blooming Idiots” ? People are going to think you wrote a book that calls people with autism idiots.

Darn it, we liked that title.  But the publisher was spot on.  Sampling the title around to potential readers indicated that it provoked a negative reaction, as if we were using the R word.

So, we tried to go artsy and suggested stuff like Our Family Garden.  But that made it sound like a book about, well, gardening.

Finally, the publisher decided to go with a straightforward approach, and Raising a Child With Autism went on the cover.

That didn’t lend itself to our original cartoon concept, so the cover art team went with a sweet image of weathered, older hands and tender toddler hands holding some earth with a sprouting plant.

We had problems with it.   One was that it was too gentle.  Our hands and Joey’s hands didn’t always work cooperatively.  Care giving verged on combat much of the time.  Plus part of our story is how Melissa and I labored together as a couple, and the cover concept featured just old guy hands and no mommy presence.  The artists went back and tried to capture that, but the result was too busy and would have cluttered the cover.

book-coverSo Elaina Lee creatively and rightly shifted the focus to the child, and that’s the cover you see.  No, that’s not Joey.  He would never wear a hat because of his sensory issues.  He is seldom that still and focused.  And as we share in at least one chapter of the book, he can be pretty hard on plants.

But he does smile, he does delight in simple things and our reward as care givers comes through those kinds of realities.  So there’s a sweetness in the cover that rightly draws the caregivers toward the person in their care, and the hope and joy found in new life blooming.

Interested in your thoughts on the cover.  What does it say to you?   And how would you symbolize your experience of care giving?

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.

Sleeping on the couch

No, Melissa and I are not having a fight.

Joey moved out to the couch this week.  He does this every year when the Christmas decor goes up.  He likes to snooze by the light of the Christmas tree.  I blogged a picture of that two years ago.

The rhythms of family life are meaningful.  Autism craves order in both macro and micro forms.  So not just daily routines but seasonal and annual cycles can be our friends.

Another important aspect of Joey’s annual relocation is that physical environment, even with some quirky changes, can make a difference in the quality of life for a person with autism.

Here’s a useful page from Australia about Workplace Modification.  Practical adaptations, such as work table heights, wider aisles for wheelchairs and the like are obvious (or should be).

But so are aesthetic or other tweaks that make the work space more enjoyable.  One agency we visited here had Christmas lights rigged to come on each time the worker completed a particular task.  (Note: such adaptations are highly individual, because the flashing light that gives pleasure to one person can be a seizure trigger for another).

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Not Joey’s actual feet.  Reenactment by a trained professional.

 

Holidays are times when most of us modify our homes.  They are an opportunity to discover changes that make life more comfortable and pleasurable for those in our care.

 

 

Up to my eyeballs

Yeah, the blogging’s been on hold.

There’s a book about this stinky care giving coming out later this year, and the publisher is actually sending me stuff to do.  Stuff with deadlines.

Blooming Idiot Title PageLook, here’s a screen shot of the title page —>

See any typos?  Let me know.  I have a week to hunt them down and report back to the editor.

But wow, to see the book in a publisher’s font instead my own laptop documents is a bit of a lift.

All of which is to rationalize more not-blogging on my part.

But seriously, when the book does come out, I hope and pray that it will be a blessing to you and to other care givers you might know.  Meanwhile, back to deadlines, and chores, and waiting for a staffed apartment to open up for our son…

 

Dominoes falling

Late last year I (Tim) noted here that I was stepping away from almost 30 years of pastoring churches.  I don’t know if that was the first domino to fall, but it is certainly one in a line of related changes ’round here.

dominosI stepped out of that emotionally draining work (really, another form of care giving) and, in short order, found myself less glum and stressed at home.  Melissa notes that I come home much perkier and roll better with intrusions like snow shoveling, bed frame collapses (I don’t think I bothered to blog that, but Joey’s bed frame required emergency disassembly and disposal) and putting VCRs out of their misery.

All of a sudden the chores called forth by care giving aren’t as burdensome.

I smile and laugh a lot more.

I sleep better.

I bumped into someone I hadn’t seen for a few months and the first words out of her mouth were, “Wow, you look younger.”

At the same time, I’ve taken a job that is doesn’t bleed me dry emotionally but has me away from the house more.  Which means…

Melissa is sentenced to longer stretches of each day alone with Joey and his needs, demands and antics.  That’s a big ol’ domino that fell on her.

Our calendar is a mess.  Doctor appointments set up months ago have to be rescheduled because I’m not available to watch or transport Joey.  Melissa and I enjoyed a weekly early dinner date – that’s been “suspended.”

Finances are… uh… adjusting to the change.

The dog and the cat seem to like the new arrangement because they get to go outside (dog) and sleep on the bed (cat) longer and later in the day.

It is likely that all the clickity-clacking will slow down in February.  Joey will start an extended day program that will give Melissa respite.  The financial reorganizing should be in shape by that pay cycle.  Who knows how many decades younger I’ll look after a few more weeks without infusions of toxic stress.

Care givers snort when we hear the advice, “You have to take care of yourself.”  I finally got around to doing so via a big, abrupt (and way overdue) change that’s certainly improved my daily quality of life, but it’s caused chain reactions with mixed outcomes for the rest of the family and others in our lives.

Sometimes taking care of ourselves stinks for those around us.  But if we don’t do some things to keep ourselves well, we will simply fall down.  Not with the click of a domino, touching and moving others, but in an inert heap that’s no good for ourselves or those in our care.

 

 

 

 

 

A catered affair

Melissa, Joey and I had a wonderful evening last Saturday.

I’ve tried to keep it out of this blog so as not to weird people out, but I’m an ordained minister in the church. For the moment. More about that later.

Claudia Tim JoeyBack to last Saturday. I baptized some good friends’ recently adopted daughter. After a joyful service, during which Joey decided he didn’t want to sit and came and stood by me like some kind of test proctor while I was preaching (the church was packed but they all rolled with this just fine), we went over to our friends’ home for a celebration.

It was a big party, as the new mom & dad both come from large families, have lots of friends, employees and professional peers.

Food and drink were catered. And – I get misty eyed relating this – our friends took the trouble to have the caterer prepare a pepperoni pizza just for Joey. And they had cans of root beer for him amidst the wine selections.

Joey found a comfy spot on a couch and didn’t want to go find a table at which to sit. So the caterers actually took the trouble – while serving over 100 guests – to bring him plates of pizza where he sat. Melissa helped him balance things on his lap (and hers) and he was a happy lad, as you see here. Joey smiley

The kindness of our friends, the caterers and everybody else that night was a precious gift to us. Last baptism I’ll be doing at that church. Or maybe last one, period. It was a positive closure for our family.

I’m stepping out of the pulpit. Don’t know if that’s for awhile or for good. That’s something about which God and I need time to talk.

It’s enough to say here that I’m emotionally run down. That’s putting it mildly. Good care giving requires the heart and churches can drain (or cap, or poison) the emotional well.

A bit scary right now, of course. Needing to overhaul finances, seek new income, etc. No crisis of faith – I’m still praying and God seems as close and loving as ever. But your prayers are appreciated as our family goes through all this change.

We’ll still be blogging here, because care giving stinks sometimes but is in our hearts always.

Donuts, Ghosts and Stuff

Did we go on a glamorous vacation? Haven’t been blogging because we’ve been on a cruise ship or at a mountain top resort?

Nah.

There’s a bunch of stuff to report. None of it is out of the ordinary. It is stuff that all people – not just caregivers – encounter. But care giving amplifies it. That little extra need, emergency or other bit of stress takes all of life’s other demands and makes them into a stinky pile.

So, donuts. Well, not donuts – The Donut Hole. Those who entrust some of their health needs to Medicare cringe at the term. It’s called a “coverage gap” which translates as a bureaucratic game that makes total sense to some office wonk someplace.

You go in to pick up your monthly prescription refill and, voila, the smiling pharmacist tells you “You’re in the donut hole.” It’s like landing on a bad square in a board game – you go backwards, or lose a turn, or, in real life, you lose a bunch of money.

We went to pick up two (yes, two) bottles of meds and dropped about $400.

That’s the donuts part. But stay with me, I have to tell you about the Ghost. And this will all tie together and explain why we haven’t been blogging.

We bought this house from a widow grieving the cancer death of her husband, Brian. Brian, like so many South Dakotans, believed in doing all of his own home repair and maintenance work. Seriously, there are true tales of guys mowing their lawns twice on their days off, because they want the yard to be just right. And they consider that fun.

The late Brian considered himself an electrician, plumber and more. Oh, so much more. Melissa and I started joking about the “Ghost of Brian” when various house and yard glitches began to manifest, generally tied to work Brian had done.

In the last two months, Brian reached deeply into his bag of tricks:

He’d put his own custom shelving into the master bedroom closet. Of course he simply screwed it into drywall rather than anchor it. Crash, boom, kerplunk went the whole closet. We picked it all up, cleaned it out and called in some pros. $500 later, it’s a pretty nice closet.

A massive water bill and constant swamp spot in the back yard revealed that Brian’s DIY sprinkler system had a leak. We had some savvy friends try to fix it, but the leak continued. We finally brought in a sprinkler pro on a neighbor’s recommendation, and he was a grandfather with decades of experience. He had to make trip after trip to finally diagnose and fix the problem, which included things like valve #1 sending water to sprinkler station 6, valve #2 to station 3, etc.

We found the sprinkler pro standing in our driveway, smoking a cigarette with a far away gaze like he’d just been in combat. He got it fixed… but that was another $300 to go with Brian’s magic closet and the donut hole.

Now the one fixture that works in Brian’s custom light array in the bathroom is flickering on and off. It was cutting out the other day and Melissa said, “Brian, knock it off.” It seems to be working for the moment, but I’m sure it’s an electrician visit waiting to happen.

Then there’s stuff – Joey’s an adult and programs that were subsidized while he was a minor are on our dime now. His afternoon “after school” program is now twice what we used to pay. His transportation costs are no longer reimbursed.

What has all of this to do with a lack of blogging? Well, I’ve taken a second job. There’s very little time to put words together.

Multiple jobs are a South Dakota thing, too. Everybody here has two or more jobs, like these folks,

That leaves Melissa with almost all of the Joey duty, and the care giving hits just keep on coming:

He’s figured out that he’s bigger than her and can use that to resist cooperating with her;

He chit chats with himself and flings repetitive questions and phrases at her until it’s like he’s drilled holes in her head. This is brutal on the weekends, when he’s home all day and the din never stops.

Plus we just got the deflating news that the wait list for Joey’s residential placement is looooooooooong and moving slowly because they can’t find enough staff to open more group homes. Care giving stinks so much that you can’t even pay people to do it.

Financially, our best move is for me to drop dead. I’m super well insured, and I’m vested in a pension through my primary job that will provide monthly checks to Melissa even when I’m kaput. (I have several wives in other states who don’t know about this so please keep it to yourselves).

But I’m stubborn and keep hanging in there. Stupid hyper-responsible caregiver personality.

Dr. Who moment, minus the time travel

I made a run to the market this morning.

As I pushed my cart somewhere between bread and frozen stuff, a store manager came up to me.

“I haven’t seen your ‘helper’ with you in awhile. I hope he’s doing OK.”

By “helper,” he meant Joey, who used to accompany me to the store. But in his teenage/young adult years, he’s taken to sleeping in on the weekends, which is just his age, not autism. So now I shop solo.

“He’s fine,” I explained, along with the stuff about his late sleeping.

The manager, to whom I’d never spoken before today, expressed his pleasure at that news, then went into an extended riff on what a good dad I am.

I held it together, but I could have shed a few tears of joy. The last month has been less than pleasant for me – in fact, some days were miserable. We were clubbed with ridiculously high, out of budget bills for medications and home furnace repair. In other news, folks with whom I’d been on good terms became unhappy with me and were arrogant and unkind in expressing it. Work sucked for about a week. And that’s for starters. I could share TMI but some of it is too painful to type.

So this stranger, basically saying, “Hey, over the last couple of years I’ve been watching you, and you are a good guy” was like medicine. Or at least a soothing shot of Tequila (good stuff only, I don’t drink swill).

Good spiritual advice is to never, ever get so hung up on compliments that you start to believe your own press releases. But I didn’t take this praise unrealistically – I know my failings as a dad but I am also aware that I’ve done things and endured in situations that send plenty of other men running out the door. And Joey’s happiness and well being is something to which I’ve contributed considerably.

I’ve never watched the show Dr. Who (that confession causes a number of my friends to roll their eyes), but someone recently shared this clip from the series. The Doctor is a time traveler, and in this scene, he’s fetched mentally tormented artist Vincent Van Gogh from the past and taken him to a present day museum display of his work. What happens is… well, watch the video clip. It’s just a couple of minutes long:

We all need affirmation. It is a blessing when it comes in some out-of-the-blue intrusion of grace.

I believe that life is full of dress rehearsals for eternal things. Coming up a few Sundays from now, many churches will hear ultimate words of affirmation,

His master said to him, “Well done, good and faithful servant. You have been faithful over a little; I will set you over much. Enter into the joy of your master.” (Matthew 25:21 ESV)

The great and eternal affirmation will come for those who did “holy” things unknowingly while muddling through “normal” stuff. Grace, out of the blue, affirming that in ways known but to Him, God made us vessels of his grace to help others through the painful world that is passing away, and toward eternal joy.

I dream of Joey

Joey was away for a couple of respite nights at a group home. Melissa and I planned to take a trip and visit some friends, but stuff of a maximum suck nature came up at work. So I had to stay closer to the “shop” and its drama and games.

It wasn’t wasted time, thank God. Still got to think through some things, put work in a better perspective, and remember that care giving isn’t always the stinkiest thing in the world. In fact, it can bring some warmth into a cold world. More about that in a bit. It will be dreamy.

sakeHis first night away, Melissa and I went out for sushi and sake. Lots of sake.

The next day, we went to a little girl’s birthday party with a princess theme. Well, pirates, too, but it was mostly girls so piracy was a nod to the few males present. And we weren’t all that swashbuckling but we talked a lot of baseball.princess

Auction to raise funds for a young husband and dad who is losing his sight was our Sunday afternoon. From there we went to pick up Joey.orange me

The three of us enjoyed our little reunion. The group home staff reported that they’d made some won tons and that Joey had consumed most of those. Joey had spent a bit of his activity cash but wouldn’t tell us how. But he was happy to be home and I found myself enjoying the return of his routines (I’ll be whining about them again soon, I’m sure).

OK, I said I’d share about the dreamy stuff. The stress of work kept me up late, thinking through this ‘n’ that. I fell into sleep and Joey showed up in a dream that went like this:

Joey and I arrived near the beach in my Chevy Cobalt. We found a parking lot with a crowd of people who were impressed that it didn’t cost anything to park there. But most of them were bicyclists, lamenting that there were no racks to secure bikes.

My bike was parked there, which makes no sense since Joey and I had arrived in a car. But there it was, and I decided to store it in the Chevy. Which makes no sense because the car is too small.

But in the dream, the seats could flatten out and make the whole interior a storage bay. So I started taking out the beach supplies to make room for the bike. Joey stood alongside the car, clapping his hands and doing autistic stuff.

When I turned around to swing the bike into the car, Joey had put all the beach stuff back in. He was smiling and chortling about it.

So I set the bike down and started taking stuff out, only to find him putting stuff back in.

Thing is, I became happy. The stress of my waking thoughts about work stupidity was displaced by this dream that had me ready to laugh. And Joey was key to that dream.

I suppose the dream has deep meaning that some wise person will bring out.

But for me, it seems that the familiar frustrations of taking care of Joey (even in dream form) can be a sweet and welcome contrast to the vicious crap that supposedly “normal” life can bring.