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.

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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.

Who cares for prisoners’ carees?

A friend who visits prisoners shared this piece that crosses into both of our areas of concern.

state penitentiary

A view of the South Dakota State Penitentiary, Sioux Falls

Care giving tends to be accepted rather than sought out.  It lands on many of us more like a meteor than like Santa sliding gently down the chimney with gifts.

Spouses, grandparents, foster families and others care for the dependents of people in prison.  They accept difficulties that none of us would choose:

FINANCIAL IMPACT OF INCARCERATION ON CAREGIVERS

Financial problems are extremely common for caregivers. Consider these key factors:

  • Family income averaged over the years a father is incarcerated is 22 percent lower than family income was prior to the father’s incarceration. (Western and Petit)

  • Seventy percent of children’s caretakers are over the age of 50. About 55 percent of children live with a caregiver who doesn’t have a spouse. And 19 percent live in households with four or more children living there as well. (Hairston)

  • Caregivers may have to make the decision to leave their jobs in order to take better care of the children. Those caregivers who are no longer working often exhaust their retirement savings in order to pay for the children’s needs. (La Vigne)

  • Forty-one percent of children in kinship care live with families with incomes less than 100 percent of the federal poverty level. (Hairston)

Prison Fellowship and others have creative programs aimed at supporting the care givers outside of the walls.

Care givers are easily overlooked as it is.  The shaming and marginalization of those with a loved one in prison can only add to invisibility.

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.

One of those days…

…on which I woke up at a mellow pace, had a fruitful time in prayer, went to the gym, and am now brewing some coffee with little on the agenda until a friend’s graduation party this afternoon.

In other words, the kind of dawning weekend most folks desire, but which is too often eclipsed.  This is especially true over the years of care giving.  Weekends?  Holidays?  Vacations?  HAHAHAHAHAHAHAHAHA

20180515_123848I read a novel for a library book club (yes, I can go to things like that if so inclined these days).  The title evokes some of my perception.  Care giving calls on us to bury a good chunk of life, especially our many preferences if we are true to the task.

Aspects of who I am are being excavated these days.  It’s uncomfortable rediscovering them.  Was I lazy or a failure to have let them get buried?  Shouldn’t I have kept life in better balance?

Or are such burials loving sacrifices?

These and questions like them exercise my heart today.  I am thankful that I have the time and space to ponder them.

 

The traumatic difference a vowel makes

I lived in Germany for several years of U.S. Army service.  No, nothing to do with Memorial Day.  I’m alive.  Call me back on Veterans’ Day.

Now and again German words or phrases come back to me from some deep recess of my brain.  I find German a complicated language and lack of use has degraded my familiarity with what little I learned way back when.

I was thinking about the German word for dream because I had a bunch of bad ones last night.  Träume* is the word, which makes me roll my eyes, because it looks a lot like trauma and my Träume were pretty much replays of emotional traumas. (*German capitalizes all nouns – see why it’s hard to learn and easy to forget?)

I had to go Googling because meaningless academic activity helps me cope with upset feelings, OK?  I wondered if Träume und uh, and trauma have the same linguistic roots.  They don’t.

Träume is Germanic and seems to go back to old Norse for joy, music, merriment.  Hardly what my dreams contained but there you go.

Change out the final e for an a (and lose the umlaut…the stupid little two dot thingy I can never remember how to type) and you’re in a time portal to ancient Greece, where the word we now vocalize and transliterate as trauma meant wound.

scary moonSo accumulated wounds from years of care giving and from all kinds of life events that were irradiated with fallout from care giving are having a nightly film festival in my head.

At least they have the decency to be in English, so I can experience acute emotional distress without having to read subtitles.

Dubbing just makes me laugh, so the trauma would lose something.

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.

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Missing Cushion

Our 28th wedding anniversary comes up toward the end of this month.

We’re coming up on half a year since our 24 year old son with autism, a presence for all but four of our married years, moved to his group home.

20180516_074005Someone described empty nest couples (sorry for the mixed metaphor ahead) as two people finding that “the cushion is gone.”  Two people with a relationship… what? invested in?  distracted by? absorbed with? filtered through? children wake up and find this empty space between them and start trying to scoot together across it.  Or refill it.  Or whatever else people do with empty spaces.

Deferred desires long stuffed under the cushion become visible.  Missed time with friends and extended family, skipped travels, unmade personal touches to home and yard, shrugged off study and career opportunities and piles of other hoped-for endeavors are there, but harder to pick up now that the restrictions of age, time and overworked finances have fallen into that space with them.

Old grievances come into the space.  The demands of the special need were exhausting but they buffered deeper discussions and discoveries that the couple should have shared.  Now these flop in with all of their emotional distortions and disputed memories and toxic colorization of today.

There’s pleasant stuff, too. A gentle pace of life was buried under the cushion and can be restored.  Daydreams can be shared over coffee or cocktails. Decisions can be talked out at length.  There isn’t a frayed and fragile cushion sitting there demanding urgent care.  Life doesn’t have to be lived as a constant emergency response.

The two shall become one flesh says God through Moses, Jesus and the Apostles.  With the cushion gone, the two can dare to shimmy across the couch, risk a hug, chance some words from their hearts, and get on with it again.

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.”

ellielacey

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.

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,