Changes

We went to our son’s annual Individual Service Plan (ISP) meeting last week, the first since he moved into a group home.  What the staff said made our hearts glow,

It’s been one of the best transitions we’ve ever seen.  It was hard to think up things for the agenda.

It’s really been that good.  He’s taken to the new arrangement and is healthy and happy.

Here on the empty nest home front, we went for some changes of our own.  When we started this blog we put up our masthead picture of the backyard dog run.  It was built by the previous owners.  Our dog never took to it, whined and barked enough to bug the neighbors and became an inside pet.

Anyway, the old picture captured the increasingly weedy and decrepit dog run with a neighbor’s well groomed yard just over the fence.  It evoked that care giving feeling that says, We’re all messed up while the world just beyond is going fine.

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The old dog run got more and more weedy, run down, rabbit and who-knows-what-else infested over the years.  We decided it was time for it to go.

 

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In came a dumpster and out came a friend with sledgehammers and a power saw and assorted other demolitiony goodness.

 

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And, voila, our yard is nice and orderly like the rest of the world.  Guess we’re not caregivers no mo’.

Of course this blog has sounded off before about how we are dealing with all kinds of deferred maintenance on ourselves as individuals and as a couple.

There are good PTSD sites out there and this won’t try to do what is already being done better.  It is enough to say that the fallout from care giving sticks around long after the work is done.

But doesn’t the yard look nice?

Recovery reversal

Our son with autism has Seizure Disorder in his overall diagnostic and safety data.  The seizures came on with puberty and were terrifying intrusions in his teen years.

Now he’s in his 20s and the seizures have faded but not gone away.  They show up now and again with much less intensity.  Well, for him.  Not for us.

It used to be that a seizure knocked him out for a good 24 hours.  He would sleep and snore or at least breathe heavily until a groggy reentry into our world.  ‘Twas up to us to stay alert and watch over him.

Last night he was here for dinner and a small seizure broke through.  He knew it was coming; he knelt on a big beanbag chair in our front room and hugged the dog, protecting himself from the risk of a fall.  (Confused the heck out of the dog, though, as our son seldom interacts with the pets).

We thought, Wow, that’s sweet!  He’s hugging the dog… Then we noticed his forearms were rigid and vibrating.

It ended quickly.  We rolled him on his side on the beanbag chair but he was up and talking in a few minutes.  He went on to have full dinner and a pleasant evening amusing himself and deflecting our efforts to engage him in anything that seems like work (that’s normal – a sign that he’s fine).

Today he was all smiles, had a big breakfast and is off to his day program.

We, in contrast, continue to recover.  Neither of us slept well, as we hovered on the edge of sleep listening for sounds of another seizure.  I took a sick day from work to recover.

It is good that he’s moved on to his group home, because we are so absolutely aging out as caregivers.

Today I feel for the folks who care for (and age with) their spouses, who don’t have group homes or agencies to take over the work.  As one said,

They looked at my diet. They looked at my life style, my BMI and they are like “There is no reason for this!” I am almost diabetic and there is nothing to indicate WHY I should be – STRESS!!!!! That is one of the worst things on a body – my body can’t take much more STRESS! Despite the yoga, the chammomile, the meditation, the walking and support -being a caregiver is MONOTOMY PLUS and horribly stressful. There is no cure.

Pardon my language, but…

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.

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.

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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…

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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)

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.

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.

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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.

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.

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.