Because

I’ve been whining about the sorting of post-care-giving issues, haven’t I?

OK, here comes a celebration of the freedom that seeps back into life.

Hatch 2018Today I’m roasting Hatch Chiles.  Most people are all about pumpkin products as summer turns to autumn.  But these beauties from New Mexico make the season for me.  Wish I could share the aroma with you.

It is not a fast process, but I can take my time on a blessedly slow Saturday morning.  Did I mention the aroma?

I’m not having to watch over my shoulder, or listen for booms and bangs, or make sure someone isn’t too close to the oven.

Because today I don’t have to.

Last night we had friends over for some prayer and Bible study, and we sat out on our recently cleaned deck because it was a lovely evening and because nobody had to stay in the house on safety patrol, or to administer meds, or clean up a bathroom, or or or or anything else.

Because we didn’t have to.

If you’re in the midst of care giving (as we were for more than two decades), savor your respite time.  It is a break from what you’re in all the time, but it is also a taste of something that is coming.

Because what you’re doing today will not be forever.

The Book of Common Prayer captures what I’m trying to say, albeit in the cosmic sense,

Almighty God, who after the creation of the world didst rest
from all thy works and sanctify a day of rest for all thy
creatures: Grant that we, putting away all earthly anxieties,
may be duly prepared for the service of thy sanctuary, and
that our rest here upon earth may be a preparation for the
eternal rest promised to thy people in heaven; through Jesus
Christ our Lord. Amen.

 

Leaf me alone!

adult alone autumn brick

Photo by Pixabay on Pexels.com

Leaf me alone is ethnic humor that could once pass between friends of different backgrounds.  It was cool when my Mexican American friend used it 40 (are you kidding me?  Forty?) years ago in our Army barracks in (then West) Germany (quite a history lesson here, eh, kids?)

When my friend John C. (whom I annoyed by calling him Juan Carlos) was having a bad day, he would exaggerate a stereotypical Chicano accent and tell the world, Leaf me alone, esay.

It’s Wednesday as I type this.  Hump Day, midweek, and, deep down inside, a caregiver somewhere is screaming at the cosmos.  Leaf me alone, esay.

My morning meditation turned up that very scream, aimed at no less than God, albeit in an ancient Hebrew version:

Take your affliction from me; I am worn down by the blows of your hand…Turn your gaze from me, that I may be glad again, before I go my way and am no more. (Psalm 39)

While our insides might scream Leaf me alone and Turn your gaze from me, family caregivers are good at smiling for the outside world and thanking people for well intended compliments like You must be a very special person for God to entrust you with this.

Some friends are perceptive enough to make a face and say, Man, I’d go crazy if I had to do that.  Or, as one counselor told a family caregiver, You’re very skilled at living in hell.

I’ve noticed on doctor visits that the “depression inventory” forms the nurses sometimes require include feeling like you would be better off dead alongside the more direct any thoughts of harming yourself?

The former is more common.  It’s not necessarily a threat of suicide but is an inner dialogue by which overwhelmed people say leaf me alone.

That doesn’t mean we’re just “venting.”  It is horrible to be in the place where life (or at least our place in it) is no longer viewed as a gift to enjoy.  Such thoughts can indicate the need for medical help, and we shouldn’t be ashamed of that.  Care giving takes a toll.

No great advice for you here.  You already know the responses… things like

  • Take respite.  I know, I know, IF it’s available.  Which it sometimes ain’t.  Like a prison inmate, you might have to create it in your own head.
  • Have friendships/activities not tied up in care giving issuesLeaf me alone is about the grind, not about all relationships and activities.  Some are welcome – so welcome them.
  • Try to prepare and eat healthy foods.  I can tell you that I’ve become a decent cook over the years.  It is more work but if you fight off the urge to microwave junk and get on with preparing more fresh stuff, you’ll feel better and you’ll find some fun and good mental activity in it.  And talking about recipe ideas with others is a great way to keep conversations from wallowing in care giving stuff.
  • Exercise – even if just walking the dog around the block.  As Mrs. Obama said, Get up and move.  Get your blood flowing and your heart and lungs working.  Turn some of the boring household chores into opportunities to stretch and flex yourself.  If you normally reach with one hand to do a task, try using the other hand.  If you tend to favor one knee while kneeling to pick up stuff, bend the other one.  Your whole system will benefit from little efforts like these.  Taking on one resented chore each day can give a sense of accomplishment, too.

I know – these things are hard to establish and maintain in many care giving situations.  But they are the antidotes to Leaf me alone, which was funny the way my friend said it but not funny in care giving.

Sprechen Sie my stuff?

Back in my Army days in Germany, I was sitting with some friends in a restaurant bar.  There was another American at another table, trying to pick up a German woman.

She didn’t speak much English, it was clear, so he attempted to connect by… getting louder.  As if raising his voice could overcome their lack of common language.

I ran into a couple of interesting articles today, each about building connection with people in our care.

In Getting Into Their Heads, Carol Bradley Bursack encourages caregivers to refrain from arguing with those in our care who live with dementia.  She encourages rolling with delusions where practical, building a bridge to the caree’s reality,  in one case buying a particular school’s class ring for her dad, who believed he’d lost his (he’d never had one in the first place).  She writes,

This is only one example of the effect of not arguing about “facts” with someone who has a different view of facts than you have. To someone with dementia, what they believe is just as true as what you and I believe to be true is to us.

She is quick to acknowledge that this is not always feasible, but still a tool to keep in our kit,

Sometimes…all we can do is try to comfort them and get them through to the next cycle. But why would we want to do that when we don’t have to? Isn’t it easier to agree that the sky is green that day than swear it’s blue? Who does it hurt?

A New York Times piece explores building social connection with people living with autism.  The two professors who combined on it are concerned that people assume limitations rather than explore possibilities:

Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors and, eventually, social withdrawal. As an autistic participant in one study explained: “I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior. There’s a point where you say, ‘To hell with it, it’s impossible to please you people.’”

The danger of being assumed to be socially uninterested is especially acute for the roughly one-third of autistic people who do not use spoken language reliably. Like other autistic people, they behave in ways that get misinterpreted, and they may not be able to correct the record.

For all of us, whether we are socially motivated at any given time depends on much more than our innate predisposition for sociability. It also depends on how we’ve been treated in the past; our ability to tune out distracting sights, sounds, smells, thoughts and feelings; and the attitudes and behaviors of potential social partners.

They are articulating what many agencies call Person Centered Care.  We do well to learn the modes and means of social interaction that work for a particular person and build from there.

Our son with autism uses movie lines (especially lyrics from musicals) to reach out to others, and can be engaged in return by those who “learn his language.”  He is capable of expressive and receptive social communication, but not always on our expected terms.

So, like the GI at the German table, don’t just raise your voice.

Well, unless the person in your care likes yelling.

 

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.

Dress Rehearsal

With our son’s new life in a group home comes our reclaimed freedom to have company without having to provide tag team care giving.

In recent weeks we’ve welcomed an eclectic group of friends to come over for a Friday night Bible study.  We look into topics brainstormed by the group.

Last night we looked into death.

As you might imagine, that took us in a number of directions.  One point that seemed to resonate was that life is full of dress rehearsals for death.  We suffer losses, not only of people we love but also of dreams, relationships, health, money, fantasies and you-name-it.

Nothing is held permanently and nothing is 100% under our control – As he came from his mother’s womb he shall go again, naked as he came, and shall take nothing for his toil, which he may carry away in his hand.  (Ecclesiastes 5:15)  That death-like denuding goes on all the time, in the midst of life.

play

Jared Cole photo from here.

 

For caregivers, it happens with a vengeance when we hear the diagnosis that turns us into, well, caregivers.  An envisioned future with a loved one dies and we die to the life we were living to that point.  The call to care giving is a blaring trumpet, announcing a cavalcade of casualties.

The Christian spiritual path is one that takes in such deaths as part of life, as dress rehearsals for the physical death that is the lot of all living beings.  I die every day!, flamed the Apostle Paul.  Yet he affirmed that this was not the final word, but always a preparation for a new and unexpected life to flower, 

You foolish person! What you sow does not come to life unless it dies.  And what you sow is not the body that is to be, but a bare kernel… (1 Corinthians 15:36)

And we can find that the dress rehearsals – those death-like losses life brings – can connect us to a death enacted for us, to empower and transform us in the here and now, not to endure losses with a stuff upper lip or daydream about a heavenly pie in the sky,  but to become life-giving blessings to those in our care; indeed to the whole creation,

I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.  (Galatians 2:20)

Let me say it again: the Christian life isn’t stiff upper lip or pie in the sky but, as one of our friends pointed out last night, passionate commitment to life with all its hurts

When Jesus saw her weeping, and the Jews who had come with her also weeping, he was deeply moved in his spirit and greatly troubled. And he said, “Where have you laid him?” They said to him, “Lord, come and see.” Jesus wept.  (John 11:33-35)

and a divine gift to help us move the world with love,

I tell you the truth, anyone who believes in me will do the same works I have done, and even greater works, because I am going to be with the Father.  (John 14:12)

Entertain the thought that care giving is one of these greater works that Jesus promises to load with heavenly power.

And keep rehearsing, even through the death scenes.

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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Transitional objects (or, should Power Rangers really “Go, go”?)

So our son with autism has a new bed coming today.

It is a change made at his request.  He managed to verbalize the desire for a new bed in his old room for visits to our house.

We’ve been buying new blankets to replace frayed old familiars.  But here’s where autism and the need for predictability comes in.  Not only are some of these old items like old friends, they have the ability to make change (e.g. a new bed) more agreeable.

20180504_094038The issue at hand is an old Power Rangers blanket.  It is fraying and, while not presently bleeding out fibrous filler, it will soon be in that dryer-clogging-expensive-appliance-wrecking place.

We want to throw it away.  We want to make the new bed a new bed, dang it.

But this is where a person-centered approach is important.  We need to make such a decision Joey’s.  We need to ask Do you want the Power Ranger blanket on your bed or is it all done?  

If he wants it, we honor that.  If it starts to come apart, then we three have the conversation explaining how it is broken and has to go.

We don’t do stuff only to and for Joey, we do it with him.

Voices

Those in our care have values, pleasures and priorities.  As family caregivers, we are often best able to recognize and interpret those to the world should the people in our care have any communication impairments.

But there are many who receive care who are quite able to speak up for their own lives, like this young man,

Seriously, I have a great life!  I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn’t have to jump the fence either time…Surely happiness is worth something?

Sometimes we have to be advocates.  Sometimes we just need to listen, affirm and encourage.

As many Christians around the world observe our Holy Week, we do well to remember that the One we honor and proclaim listens to voices we ignore or shut down,

People were bringing little children to Jesus for him to place his hands on them, but the disciples rebuked them.  When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”  And he took the children in his arms, placed his hands on them and blessed them.  (Mark 10:13-16)

…Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside.  And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!”  And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.”  (Mark 10:46-49)

Jesus walked through our world announcing that no person was inconvenient or unwanted.  He spoke up for the voiceless and heard the cries that others sought to silence.

He still does.

Quicker to hear, slower to speak

In Raising a Child With Autism, I wrote,

Joey is not what we made or failed to make him.  He’s always carried strengths of his own that we can admire as precious gifts from God.

More people with autism are expressing their own points of view.  For caregivers, these can be challenging but are precious to our efforts to provide care that is loving as well as “effective.”

Dan Jones is an adult with autism who shares his experience and insight via books and articles.  In a blog piece on Applied Behaviour Analysis, he praises ABA for providing tools that give people with autism behavior choices in school, the workplace, and other social settings.  At the same time, he raises a caution,

Another issue with ABA is that it is just ‘identify the behaviours that we don’t want the child to do and change them, identify the behaviours we want the child to do and get them doing those behaviours’. As mentioned, it misses the ‘love’ element, the respect for the child and what they are communicating by their behaviour and their inner world and emotions.

Care giving needs that love element.  There are all kinds of efforts we apply to teach skills and eliminate unpleasant and even dangerous behaviors, but we should not overlook the day to day relationship exchanges that can help those in our care express and embrace things that enrich their lives.  In another bit of Raising a Child With Autism, I recall how

Several doctors praised us for our son’s emotional connection, affection and happiness. Those who live with autism, whatever they might feel within, are challenged in their ability to express it and seem aloof if not completely detached from the feelings of those around them.    We didn’t have special knowledge or strategy to cultivate Joey’s warmth toward us. We just stayed close to him early on.

Melissa sang to him on days when he didn’t seem to hear a note; as a young adult he can enjoy an entire musical at the local playhouse.  We talked to him as though part of our conversations even when he didn’t make eye contact or walked away; now he can attend social events even if he just stands smiling on the edge of the party.  We made his place at the dinner table even when he had the habit of taking a bite and then running a repetitive pattern around the house (we would shrug and say, “Hate to eat and run…”); now he eats in restaurants.

There’s a nugget of spiritual insight in play here.  In the New Testament, the Letter of James encourages those who would be loving people to

…be quick to hear, slow to speak… (1:19)

Those in our care might not be able to express their hopes and disappointments, joys and hurts, dreams and fears with words.  But their’s is a language of the heart that can be shared over time if we slow our anxious antics enough to hear it.