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.

Every Note Played

I am a commuter these footloose and fancy free days.  Yes, that’s sarcasm.  Care giving rides with me all the time.  It knows when I’ve been sleeping, it knows when I’m awake, it knows that I’m trending badly and never good enough… Whee!  Everybody sing!

Still, the time in the car lets me enjoy reading, by which I mean listening to audio books.

Every Note PlayedI just finished Every Note Played by Lisa Genova.

This simultaneously brutal and beautiful novel is primarily a call to compassion for those suffering with ALS, commonly called Lou Gehrig’s Disease.

It’s also an honest and sympathetic portrayal of care giving.

The story follows world renowned concert pianist Richard as the disease takes control of his life.

At the same time, it gives voice to his decidedly estranged ex-wife Karina.  As the disease progresses, it falls to her to become his primary care giver.

The fictional Karina will become an immediate confidant to any real life care giver who reads or hears the story.  Like most of us, care giving falls in on her.  Her life is taken over by ALS, too.

The author brings out the full range of care giving emotion.  There are all of the bitter, ugly feelings and daydreams.  There are also the splendid discoveries and inner healings that would never come without the demand to take care of another in ways above and beyond “normal.”  There’s painful honesty about playing the victim and blaming others or an out-of-our-control illness for life choices we did have and failed to make – or made poorly.

The story also brings in the perspectives and significance of others called upon to care for Richard; there’s Bill, a home therapist who found his calling by caring for a partner with AIDS; Grace, Richard’s and Karina’s collegiate daughter who must slog through the fallout of their divorce to reconnect with her father; and an array of medical and therapeutic specialists whom the author imbues with distinct personalities and gifts that they bring to bear as Richard’s need escalates.

Genova does noble work in articulating, through Richard, the point of view of the person receiving care.  There’s the flood of gratitude for what seem like minor gestures, and the cold indifference or flaming hostility to big ticket technology that can add convenience but deepen feelings of imprisonment and humiliation.  There’s the need for power to make some choices, from the right music to play to life and death decisions about treatment options.

By exploring Richard the caree and Karina the primary care giver with depth and honesty, the story makes their struggle to be at peace credible, dramatic and moving.  If your tear ducts still work, they will find opportunity to represent as this story unfolds.

My minor quibble with the book derives from its core strength.  It is a detailed explanation of ALS in story form, but the quest to get in all the info about the disease sometimes overflows the narrative and comes out like a lecture.  A chapter that mentions a palliative drug cocktail lists the specific medications at least three times by name.  There’s an infrequent but noticeable tendency to wander away from expressing the disease through what Richard is experiencing, thinking and feeling to sentences that seem disembodied and didactic.  The info is worthwhile, to be sure, but sometimes intrudes on the connection with the characters that is the heart of the book.

But taken as a whole it is an excellent novel.  It is a story in which the heroes are the villains and vice versa.  Richard and Karina are each, as Charles Lamb said of Coleridge, An Archangel a little damaged.  Although their story is driven by ALS, their struggle will ring true for family caregivers in any setting.

The national need grows

Sobering stats in the Minneapolis Star Tribune:

Soon, Minnesota and the nation will reach a demographic crossroad. In 2030, the first wave of the baby boom generation will turn 85, an age when people are twice as likely as those even a decade younger to need help getting through the day.

Family sizes have been shrinking for decades, which means there will be fewer adults to care for older relatives in the years ahead. By 2030, the ratio of informal caregivers to those in most need of care will be at 4 to 1, down from a peak of 7 to 1 in 2010. By 2050 in Minnesota, which has one of the nation’s longest life expectancies, there will be fewer than three family caregivers to care for each family member over age 80.

And this isn’t just in our homes, but in the institutions we assume will handle the need:

The need is great and getting greater.  Many care giving agencies are recruiting help.  If you know folks who might have an aptitude for caring (qualities like compassion, patience and resilience), the opportunity for meaningful work is out there.
I was invited to speak at a care giving agency in April, and the staff brought up the encouragement of others to enter the field as an important contribution the wider community can make to their efforts.

We’re being followed

Here’s a bit from Raising a Child With Autism, courtesy of the publisher,

I was more on top of weed-pulling in our first garden. I had the energy of youth, the pride of a new homeowner, and it seemed urgent. Likewise, in the early years of Joey’s life, we were young enough to run ourselves ragged trying to do everything: work on every skill and learning drill, coach him through every small task, try to keep him engaged, clean up after him, visit and consult every expert, and go to every seminar and meeting. As each year passed, we accepted more freedom just to say “no.” We accepted that there would be all kinds of needs and issues all the time.

We also learned more about depending upon others. I pay friends’ kids to pull my weeds these days. In raising a person with autism, there are free services and activities out in the community, and some for which you have to pay. Either way, there are good and competent folks who can enrich the life of a person who lives with autism.  

You can spend all of your time pulling weeds. You’ll have a nicer garden, a sore back, and a growing sense of futility. The job is never done.

20160317_153607

They helped me out of the hole.

A very insightful piece. She blogs more often about relationships but her insights here are VITAL to caregiver survival.

“If there’s anything I’ve learned during this season of my life, it’s that we all NEED people and that we weren’t made to be alone.”

ELLIE LACEY

Hi world,

It’s me, Ellie. I know it’s been a little while since I shared my thoughts on here but I am backkkk. Quite honestly there was a reason for my MIA-ness. I have been going through some things in my life over the past few months that were too personal and deep to share via online. Don’t worry, I wasn’t depressed or anything like that but the things that I was dealing with were too raw and personal to share online. I didn’t know how to verbalize them and I’m still not sure when, if or how those things will be shared on here. I’ll keep you posted 😉

I really wanted to share these things that I was going through with people who asked. People who I have been doing face to face life with, not the whole wide internet world. It can be such a positive thing…

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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,

The Dignity of Risk

Tim had a chance to speak to the staff of a non-profit community support provider.  Many of the attendees wore blue in support of Autism Awareness Month.

ABS Blue April 2018It was a chance to remind these care giving allies how much they mean to families like ours.

Tim shared a story from our book, recounting how we threw a little party to offer a personal goodbye to one of our son’s music therapists before we moved to another state. He noted that educators, medical providers, therapists and all kinds of other direct support folks don’t hear from families unless and until something is wrong.  Our interactions tend to be steeped in bad news. We need to find ways to say thank you and, as the New Testament puts it, encourage one another and build one another up (1 Thessalonians 5:11).

As we shared in an earlier post, community support agencies have the heart and vision to provide all kinds of help to people with special needs and their families, but are hindered by lack of staff.  When Tim asked his audience what things families, churches, community groups and other neighbors could do to enhance their work, responses included

  • Identify people suited to care giving and encourage them to consider it as a career
  • Help the public understand the work of service providers and why they do it
  • Provide meaningful interactions and opportunities in the community for the people receiving services
  • Express gratitude to caregivers
  • Engage in advocacy work on behalf of community support agencies

One of the people present spoke of care giving as possessing the dignity of risk.  Caring for people with special needs means going down unfamiliar paths, trying out the untested, sometimes trusting intuition in opposition to common sense, and learning to center efforts on the person in our care instead of our own expectations of “what’s best.”

Families have this risk, dignity and all, dropped upon us when our loved one is diagnosed.  We accept the risk out of love and duty.

We are blessed when folks who don’t have to accept it choose the dignity of risk as a way of life.  May their tribe increase.

The harvest is plentiful, but the laborers are few. Therefore pray earnestly to the Lord of the harvest to send out laborers into his harvest.  (Luke 10:2)

Not another list

I know, I know, you try to chill with some time surfing the internet and you are bombarded with the 5 Things You Must Do and the 10 Things You Should Never Do and the 3 Things You Absolutely Must Stop Doing.

So many experts available to overhaul and repair our lives.

Bumped into a list this morning, but it’s good.  It’s not loaded with absolute, must, always, never or any of that arrogance.  Just four good ideas, especially if you’re not a caregiver but care about someone who is.

This one most resonated with me:

Time is the greatest gift. Many caregivers have told me that caregiving locks them into whirlwind daily routines of attending to others’ needs. Above all else, they miss time for themselves — to go to the salon or bank, read a book, clean the house or catch up on sleep. The greatest comfort you may offer is the gift of time. Offer to sit with care receivers while caregivers take a break. Pick up supplies for caregivers so they can stay home and relax. Try to make yourself available to listen as often as they need to vent.

Tony Gaines Starz

Yes, me (on the right) doing stupid guy stuff with a friend makes me a better caregiver.

Things you might consider small favors are solid gold to a caregiver.  YOU just being around can be a gift.  Even in the midst of a tornado of chores, an adult friend with whom to joke, whine, opinionate or otherwise have a peer level, non-care-giving interaction is a blessing.

Go check out the list of four suggestions.  You’ll find you have a lot to give by just being you.  And in caring for us caregivers, you are improving our peace, strength and focus to help those in our care.

 

Flurry of memories

20180414_132115Much of our region is shut in by a massive blizzard today.  The City of Sioux Falls is asking people to stay off of city streets, let alone risk country roads or the Interstates.

Now that we are empty nest, I find myself remembering the anxiety that would have accompanied this kind of day when we had our son at home.  Everything would be wrong and a potential meltdown: if the weather cancelled an anticipated outing; if it prevented fulfillment of a whim for some particular food that wasn’t in the house; if any daily routines were in disarray.

Boredom would make him edgy and mounting stress could issue in a seizure.  But he wouldn’t engage in activities we tried to share.  He’d generally vocalize some demand that was impossible to meet and his tension would escalate.

Today he’ll be in his group home.  He has his own room with a computer and movies in case he wants to be alone.  There are common spaces with things to do if he wants company.  And there are staff there with the residents doing what we used to do, and we are grateful.

Stressful days are not limited to snow days when it comes to autism and care giving.  School vacation or “in service” days, when routine is removed, can be walks through hell.

My respect goes out to all who are shut in today, be they people with special needs or their caregivers.  Whatever inconveniences and challenges most of us endure, they have an extra helping or two.

“I need help, please.”

I need help, please was a bit of expressive language that some good teacher or therapist helped our son with autism to use years ago.

For a person like our son, navigating an array of impairments like fine motor and personal care skills, the request is vital for opening a bottle of juice or getting to the bathroom on time.  (Of course he also learned to use it to enlist mom and dad for remedial action; I need help, please could signal a wardrobe change or a bathroom cleanup.)

It’s a sweet phrase in our family life.  It’s entered that volume of cute things the kids used to say, so my wife and I might raise our voice to a childlike tenor and say it if we can’t  find some item around the house.

But it came to mind in a more serious context this week when I asked a clergy friend about his Easter service at a residential care facility.

He shrugged and said, Well, there aren’t that many there to attend because they don’t have enough staff to house the population they used to.

help

From here.  They need help, too.

I need help, please.

People with special needs need family caregivers.

Family caregivers need professional allies in public and private agencies.

Public and private agencies need good human and financial resources to support individual and family needs.

The need for help is broad, but energy, money, time, staff, space, love and other resources can be in short supply; either hard to find or quickly exhausted and slow to replenish.

It’s a tough and perennial problem, even for the ultimate caregiver,

And Jesus said to them, “The harvest is plentiful, but the laborers are few. Therefore pray earnestly to the Lord of the harvest to send out laborers into his harvest.”  (Luke 10:2)