Caregiver Health Risks

Not sure we needed research to tell us this but maybe it will awaken some compassion in others who haven’t walked down (yes DOWN, as in stumble, fall, get up, repeat) our path.

Caring for others ain’t good for your health.  And if you fit certain profiles you’re at greater risk:

Participants with emerging chronic health problems experienced the biggest declines in health, with rates of hypertension, arthritis and rheumatism, digestive diseases, chronic lung and heart diseases more than doubling.

Being older, female, not receiving a pension, not feeling financially adequate and having depressive symptoms and functional limitations at the start were also associated with worse health among caregivers at the final follow-up.

deadI don’t have most of those factors working against me but stress about not feeling financially adequate is kicking my posterior.  Well, that and turning 60.  I get short of breath and feel overall weakness after bouts of anxiety – it’s like I can feel my own death settling in.

So, you know the drill.  You go to a doctor or other professional or even a friend you perceive as wise and you lay it all out and the reply is,

Hey, take care of yourself.

Take time for you.

Exercise, diet, sleep.

And of course your anxiety goes back up because these are exactly the things that are getting wiped out of your life and why you asked for help in the first place.

I go to the Bible often because it’s not the pie in the sky that many assume it to be.  Much of it is written to and for people caught in rotten situations.  There’s precious little “here’s how to fix it” and much more empathy and simple encouragement to hang in there, because who you are and what you do has meaning.  Here’s a good bit:

“God opposes the proud but gives grace to the humble.” Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world.  And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.  (1 Peter 5:5-11)

Yes – there are wretched things happening to you and to many folks just like you.

No – it won’t go on forever.

Yes – There are evil voices trying to talk you into despair.

No – those voices aren’t the final say.

Yes – there is divine power on your side.

The Greek word translated cast (cast your burdens) is a verb associated with throwing loads on pack animals.  Which is to say that when you pray – when you try to talk to the divine power about what you’re going through – you do NOT need to be elegant, gentle, proper, pious or whatever you think that talking to divine power entails.

Dump the load on God and insist – insist – that he carry what you can’t.

Did you catch the next line?  God will because he cares for you.

God can be the caregiver to caregivers.  Because the divine power does not get sick and die from taking care of us.  God has no risk factors.

Well trained in dysfunction

You’ve been practicing these habits for a long time and it will be hard work replacing them.

So said a good counselor after hearing another summary of my neurotic accommodations to life’s challenges.

While “normal” life invites us to try out personal training in dysfunctional thinking and behavior, care giving pretty much necessitates it.

Are you angry?  Practice holding it in because if you get loud or take a tone it will upset the person in your care.

Are you a people pleaser with crummy boundaries?  Keep pulling down your fences and pushing open your gates because you’re Just So Needed.  Where will those loved ones be without your sacrificial efforts?  I mean, the whole world might come off its axis if you stop.  And It’s All Your Fault.

Are you the addictive type?  Eat, drink, smoke or otherwise imbibe comfort, ‘cuz you ain’t gonna get it from healthy relationships (of which, it should be said over and over, you’re manifestly unworthy.)

20170715_131800A friend sent me this pro wrestling poster from our younger days.  Pro wrestling is a good simile for what I’m talking about here.  Yes, they train hard.  But it is to produce a product that is fake.

Hey, it draws cheers from the crowd if you do it right.  Even if all the pretense might leave you crippled.

My big discovery this week is that things are worse than I thought.  Why do you try to play God and take the world on your shoulders?, I’ve been asked more than once about my care-giving-supplemented anti-health training.

But that would be easy to address, wouldn’t it?  I mean, it’s a simple confession that my pride is taking on stuff beyond what a normal being can do, so the path of repentance is clear: identify the over-the-top stuff and leave it to God.

But what I realized this week is that I’m not playing God: I’m worshiping a false god, an idol.

Trying to make everybody happy and ensure good outcomes, the focus of my relentless training, IS NOT SOMETHING THE REAL GOD CLAIMS TO DO.

It is a fake god, a demon.  I’m not stepping into the middle of the universe to play God, which reality quickly corrects.  I’m wandering around in a phony universe, a simulation that maintains the lie and never delivers on what it promises and promises and promises.

Although a humiliating discovery, when I was able to express it I felt about 500 lbs. lighter.  Some restoration of health and sanity is already underway.

I wish I could say that it was like an exorcism and now the idol is gone and I’m back to reality and can’t we all just get along?  But there’s much more to do.

My working name for the idol is “FEAR.”  Fear goes back a long way in my life, taking up residence (at least as far as I can consciously regress) in childhood trauma that I’m not going to dump here.

But it now pervades everything. It warps decisions, it mocks every thought and stalks every experience.  It casts a smoggy haze over relationships.  Decades of care giving, with all the could-go-wrongs and worries that accompany it, helped FEAR embed and enlarge in my soul.

So I need to change my exercise program.  I need to pull down and smash the stones of which this great idol is built.

When people were dazzled by a great ancient temple, where political power and profit had displaced prayer and the presence of God, Jesus of Nazareth said, Yes, look at these great buildings. But they will be completely demolished. Not one stone will be left on top of another! (Mark 13:2, New Living Translation)

I’ve been repeating that – not one stone left on top of another – as the voice from the FEAR altar snarls in my consciousness.  My resistance training now must be pushing and pulling down worries and expectations over which I have no control, and stepping up to action where I can be responsible.  Saying NO more often.  Speaking for myself instead of bouncing back what I think someone expects me to say.

I hope this reaches some folks at the start of their care giving years.  Please, please, please: don’t smash yourself.  Smash the stones that are piling up – the false expectations that ask you to do things that aren’t necessary and/or by which you hope to gain some kind of elusive approval from the universe.

Smash your idol before its temple gets built.

Jerusalem Temple Stones Matt Kennedy

Jesus was right about that temple.  Matt Kennedy took pictures to prove it.

Upside Down

Well, not literally.  I’m not flipping the car or other antics described in the last post.

The publisher of my book about the care giving experience occasionally posts excerpts on the web.  One came up today, and it flips into that “upside down” feeling,

I guess it can’t be any other way. There is no magic cure for autism. You have to take in lots of advice and experiment with different approaches because what lifts the life of one autistic kid could be fruitless or even counterproductive with another.

upside down me

Care giving: actual footage.

The universal manual of “normal” parenting fails to help. Normal parenting is to yell if you spot an emergency in progress. But if we’d raised our voices and warned Joey, “Hey, put that down. You’ll put your eye out,” we’d be living with a Cyclops by now. You learn to use soft, reassuring tones to say, “Honey, you’re standing in front of an oncoming bus there. How about standing with Mommy instead?” You find yourself looking at the world upside down.

Care giving is a practice in which common sense and conventional wisdom take frequent beatings.  Which is why I try to share some spiritual perspectives here from time to time.  Misery loves company as it stands on its head, and it also cries out for help that can bring things into perspective.

And just like that…

ditch

He lifted me out of the pit of despair, out of the mud and the mire.  (Psalm 40:2)

…I was at the bottom of the ditch between north and southbound lanes of the Interstate.

I probably fell asleep at the wheel.  I know that one moment my car was heading north and the next it was turned west, running over an orange construction cone.  I managed to control the vehicle, not slamming on brakes and steering to roll with the the terrain.

I bumped down into the culvert, nosed the car north and, as it was running and did not seem damaged, was working to ease it back up onto the blacktop when I became stuck in the muddy bottom.

Smart phone, auto club, yada yada yada.  Just like that, I was winched out and driving home.  After a County Sheriff showed up and told me he wouldn’t ticket me for reckless driving and just chalk it up to stupidity.

Yeah, have a nice day.

Talking with my wife at home, I found out I’d been snoring the night before.  Full disclosure: I have sleep apnea and use a CPAP.  Came on just like that in my late 50s.  The mask must have slipped in the night and I was probably oxygen and sleep deprived.  The sun through the windshield warmed up the car and just like that, I was westbound on a northbound Interstate.

Just like that, we are old and do old folks’ stuff.  We fall asleep at embarrassing times and drive less aggressively but also less competently.

My wife talked about me needing to recognize my age and not turn around from a late night meeting and drive (which I had) to run right back to work early the next day (did that too).

Just like that, we were into a discussion about formerly easy household tasks that now seem like hard labor, changing diets, things with which we used to roll that now cause impatience, and other old people gripes.

Now, these are not unique to caregivers.

What strikes me is the way we didn’t accommodate the changes and evolve with them as we went along.  Just like that, they’re all in our face.  We didn’t age gracefully or go through midlife crises or any of that.  We went flat out as caregivers and just like that the role mostly went away and just like that we looked around and found ourselves aged.

So back to yesterday’s mishap – down in the ditch, just like that, my inner teenager represented as a compulsion to Instagram the picture of the tow truck setting up to pull me out.

I was struck by the cross-shaped apparatus being deployed atop that green hill not-so-far-away.  It’s the sign of life that Christians see by faith, and Jesus planted it right where we live, among the visible, sensually perceived signs of decay and death.

So my heart, mind and spirit are still in working order (assuming that meditating on the cross while being towed from a ditch isn’t a sign of mental degeneration, which can also arrive just like that.)

Anyway, as you come to the end of a season of care giving, you will find that a bunch of changes set in while you were so busy.  Be gentle with yourself as you recognize and adapt to them.

And don’t drive when you’re tired.

And if you’ve neglected it, commence a gentle turn toward things eternal: In you, O LORD, have I taken refuge; let me never be ashamed.  Do not cast me off in my old age; forsake me not when my strength fails.  (Psalm 71)

Strong mind, weak back

When advocating for our son’s placement in a group home, one of our arguments was our increasing age and the upcoming physical challenges of ’round the clock care for an adult with autism.

Now that he’s placed, our incredible wisdom is validated.

This week, Tim was diagnosed with something called “frozen shoulder.”  As the Mayo Clinic reveals,

Certain factors may increase your risk of developing frozen shoulder… People 40 and older… (Note: Tim’s about half past 40).

Even with Joey in a good group home, our age impinges on what we can do for him.  We just bought the new bed he needs, and Melissa’s call to the mattress place went something like,

My husband can come pick it up, but he’s got a shoulder thing.  Can someone there help him get the mattress on top of the van?  And can you tie it down for him?

Which is to say,

Silver Roses

An excerpt from our book showed up on our Publisher’s page today.  Hope it helps you get off of your own back.

One year, my wife and I planted roses all around our backyard. If we knew what we were doing, we would tell you that the flowers were called Lady Wilhelmina Sunburst Spectaculars or some such name. The reality is we went to the nursery and said things like, “Oh, let’s get some of those silver ones.”

Sure, we had red roses and yellow roses, but we were really excited by the bush that would give us silver roses. Our friends would stare and sputter, “Wow, silver roses. Never seen those.”

We planted the silver rose bush in a prominent angle of our fence line. It would be the eye-catching star of the backyard. We followed the nursery’s instructions about how deep to dig, how much to water, and whether it liked red or white wine with meals.

Our dog at the time was a burly malamute mix named Rocky. Evidently, he shared our interest in silver roses. We came home one afternoon to find Rocky lying on the grass, gnawing on the dug-up silver rose bush. After much arm-flapping and loud shouts of, “Oh no!” and “Bad dog!” we replanted the bush. Rocky was a good dog and left it alone. A few weeks later, we had our silver roses. That rose bush didn’t pout because a couple of beginning gardeners forgot to protect it from their dog. It just went back to making silver roses.

Our son Joey endured much because his caregivers were medical amateurs. We never spotted warning signs before a seizure caused him to bang his head on a TV stand, making him bleed profusely. He couldn’t tell us that a stomach bug had him dehydrated, and all we could do was watch the emergency room nurses give him an IV to re-inflate him like a tire.

But after incidents like those, he just took up wherever he left off. Our expertise—or lack thereof—didn’t bother him. He went back to his daily routines and loved us just the same. Joey is not what we made him or failed to make him. He’s always carried strengths of his own that we can admire as precious gifts from God.

We are part of a culture that takes responsibility for too much and assumes that our every word, deed, or thought will have a life-altering impact. Caregivers take that warped thinking to another level since we are in constant interaction with people who have special needs, and we assume that we will do them more harm by our perceived failures.

“For we are to God the pleasing aroma of Christ among those who are being saved and those who are perishing. To the one we are an aroma that brings death; to the other, an aroma that brings life. And who is equal to such a task?” (2 Corinthians 2:15-16 NIV).

We are who we are. Others are who they are, too. Our impact on them is dictated as much by their own inner workings as by our intention and skill.

So let’s drop fear of failure from the one hand and fantasy futures from the other and concentrate on taking hold of what is true in the relationships entrusted to us by God in the here and now. Those placed in our care have special needs we can meet, but they are unique people and not just extensions of our lives.

Silver roses are not our creations; they are the beautiful flowers of tough plants.

Don’t Call Us

Our publisher’s site features a bit from our book today.

If you are grappling with frustration, especially if it’s born of perfectionism and the constant setbacks of care giving, you might find this little selection useful.

pathetic-7If our efforts to raise houseplants have been hit and miss, imagine some of the misadventures of raising a son with autism. Caregiving provides instant and constant experiences of inadequacy. Just as we’ve tried various strategies to keep the plants growing, we’ve sought out an array of therapies, settings, medications, specialists, diets and more to bring out the best in Joey’s life. And even with all that help, there are plenty of withered efforts to report.

It’s not all gloom and doom.  Some of the spiritual uplift (we hope) of the book comes in as well.

Hoping you have some good growth and blooming amid all your fails and weeds today.

A dish best served with a smiley-face flower

The news is that agency staffing issues will delay our son with autism’s move to a group home (which seemed imminent about ten minutes ago) until mid-October.

Meanwhile, he’s descended upon us with increased nagging and bargaining for his Christmas list (yes, he starts early).  Mom and Dad are both on the ragged edge right now after bouts of illness and long work hours, so the din of his demands is a mental and emotional pummeling.

Yesterday we began to dish up a big ol’ plate of vengeance.  He came home from his day program with this very sweet guide to respectful communications:

20170824_173707THINK Before You Speak

T – is it True?

H – is it Helpful?

I – is it Important?

N – is it Necessary?

K – is it Kind?

BTW we stipulate that this is sound advice, not just for empathy-impaired people with autism but also for married couples, workplace relationships, social media, etc. etc. etc.  The world could be a much better place – Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. (Ephesians 4:29, The New Testament)

And yes, that’s a rack of his daily meds at the bottom of the picture.  I’m so tired that I gave up on the photo cropping function and I don’t much care.

So we used this against him with great delight,

Joey:  Be a good boy there will be presents?

Hateful parents:  Joey, is it NECESSARY to talk about presents today?

Joey:  When it’s winter there will be presents.

Atrocious parents:  Joey, is it HELPFUL to talk about this before the snow comes?

Joey:  When the snow comes there will be presents.

Should-be-arrested-and-executed-parents:  Joey, is it KIND to keep talking about presents?

Hey, you find respite where you can get it.  That’s care giving.  And it makes even a smiley faced flower stink some days.

 

What’s left

We are almost sitcom laugh track worth ’round here today.

Joey, our 23 year old with autism, has a nasty cough and is home in a NyQuil haze.  He’s intoning Disney movie lines in a voice that sounds like the audio of a slow motion replay.

Melissa (mom/caregiver) is suffering from a double shot – one shot of staying up all night to care for Joey and the other a shot of recurring pain from a chronic illness.  She’s closed her eyes for a few minutes (btw I think she’s pretty when she sleeps but that’s just editorializing and so I’ll move on).

Tyrion Aftermath-of-the-attack

Tyrion Lannister visits our living room today.  From here.

I (Tim – dad/caregiver) am sittin’ here typing this while my eyes keep closing and head drops on the verge of sleep.  I have the day off but I’m sleep deprived from some kind of phantom leg pain (possible arthritis although disc problem is another one the doctor threw in to consider).

We are all beat up in one way or another, but not by one another.  If anything, there’s a tenderness in the house that is surprising given how cranky pain can make any one of us.

When all else fails (and hey, what doesn’t when you’re a caregiver?), your kindness remains a gift to those in your care.  On days when all of you are hurting, you find out that everyone in the household is a care giver and a recipient of care at the same time.

Letting another’s head rest on your shoulder is a successful intervention, “How are you?” is deep communication and “Sit down, I’ll get that for you” is heroic service.

Sometimes what’s left is you, and you’re plenty.

I sent a prayer request to a friend in the midst of our family sick day, and what he sent back says it pretty well,

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (2 Corinthians 1:3-5)

Stop and stare

Today’s e-mail regarding a residential placement for our 23 year old son with autism:

Unfortunately, from speaking to XXXXX there will not be any pre-move meeting to discuss potential dates to move Joey into YYYYY. This is due to being short staff and not having staff in place at YYYYY to best serve Joey safely. According to XXXXX, staffing should be figured out by mid October I was told.

It was only a few weeks ago that we were given a tour of a place, told we had five days to decide, decided, and then received an offer for him to move in.

Now, the whole thing is

a177555_008.jpg

How about a little One Republic while life’s on hold?

Stop and stare
You start to wonder why you’re here not there
And you’d give anything to get what’s fair
But fair ain’t what you really need
Oh, can you see what I see