There’s nothing like glue for the holidays

I came across a piece from Canada’s National Post that describes family care givers as the “glue” that keeps national health care in one piece:

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Man, ultimate? Waterproof?  In&Outdoor?  Wish I was this bada**

“Family caregivers provide the vast majority of care that happens in-between appointments with physicians or in-between hospital stays or different interactions with the health-care system,” said Christa Haanstra of the Change Foundation, an independent health policy think-tank dedicated to enhancing patient and caregiver experiences.

“There’s a lot more health care happening in the home, provided in large part by family caregivers,” said Haanstra, noting that caregivers are often invisible in the health-care system, with their contributions going unrecognized as well as unrewarded.

“We really think about them as the glue that keeps the health-care system together.”

The article goes on to describe the cost to the care givers:

…61 one per cent admitted they took on the role because they believed they had no choice, with many at times feeling trapped, helpless, frustrated and overwhelmed.

The survey found 36 per cent of caregivers felt depressed and 33 per cent were resentful of their role, with almost half overall saying caregiving had negatively affected their ability to have personal time, engage in travel or enjoy a social life.

One-third said they had experienced financial costs due to caregiving, including out-of-pocket expenses, time off work and turning down career opportunities. Eight per cent lost their jobs due to caregiving responsibilities.

Beyond the statistics are the personal accounts.

(76 year old Don) Mahood was Mary Charlotte’s 24-7 caregiver, until his wife of more than 50 years was moved to a long-term care facility about a year ago.

“At the end, I had to dress her, bathe her. I had to do everything, she couldn’t brush her teeth,” he said. “When I look back, I don’t even know how I did it myself.

“I was worn to a frazzle.”

Though caring for his wife was a labour of love, the disease put an end to their plans to spend part of their retirement years in Florida. Mahood also had to give up activities such as playing hockey, and his social life faltered as long-time friends dropped by the wayside.

The winter holidays are here.  There will be funds appeals of all kinds, and Facebook memes of appreciation for those who work while others party.  And all of those are good things – not knocking them at all.

But don’t miss that rapidly drying out bit of glue that helps keep society together – the amateur, shanghaied-by-circumstance army of folks in homes all around us, trying to keep things festive and “normal” in situations that ain’t.

To mix metaphors, I’ll recall what Jesus said to his disciples, You are the salt of the earth, but if salt has lost its taste, how shall its saltiness be restored? It is no longer good for anything except to be thrown out and trampled under people’s feet.  (Matthew 5:13)  Care givers around us know what it’s like to lose their vigor and be trampled down by routine.  We look like ourselves but we lose ourselves.

Reach out.  Help the glue stay sticky and the salt stay salty.  Some practical ways to do that are suggested by another care giver and blogger.

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.

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.

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.

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.

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.

 

“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)

A different kind of death

The days after parents hear their child has a disability or special need can be difficult days… Most parents go through a mourning process. The expectations and dreams they may have had for their child die and new ones must take root.  (Sandra Peoples)

003Easter is about an empty tomb.  The expectation that “It’s all over, all is lost” gives way to new life so amazing that, at first, it’s beyond words,

And they went out and fled from the tomb, for trembling and astonishment had seized them, and they said nothing to anyone, for they were afraid.  (Mark 16:8)

May the surprise of Easter give you new hope – new LIFE – in place of whatever you’ve had to give up.  Don’t worry if you can’t hang words on it right away.  Just live it and the One who gives it will help you understand.

One plan and many question marks

The staff at our son’s new group home are encouraging us to have him there full time instead of just weekends.  People with autism benefit from (heck, generally insist upon) predictable order, and Joey needs greater regularity in the new place.

But for our part, Melissa (mom) had a good insight for keeping him close at this time of the year.  Joey loves Christmas, and to let him spend time in familiar company, decor and activities showed him “that things he loves are not going away.”

He’s having a very merry Christmas.   I can’t remember one more smiley and less moody.  Last night his brother and sister-in-law took him to dinner, and this picture reveals how much that meant to him.  He’s not one to smile for the camera, after all… Joey Tim Carly

Later they went out to visit some old friends and he was not happy to see them go.  He opened the drapes and watched them get into the car and even verbalized feelings about wanting them to come back in.

We get it, this inevitability of change.  But it is going to be some hard going in our hearts in the short term.

below zero

 

Accenting the emotions is an Arctic cold front sitting on us for the time being.  At first it was just our usual hard winter cold with blue skies and bright sun, but yesterday it went to bleak gray along with… with… well, I’ll let my Chevy do the talking.  I could start a post with “It was a dark and stormy night” and be only a tad melodramatic.

Work is kicking my butt.  We set a sales record in my little department but my body is not what it was and the aches and pains never seem to go away.  I’m not sleeping well stewing about Joey and work and bills and and and and.

But that’s another point in favor of making Joey’s transition happen.  Melissa and I are not getting younger and our skill set and energy for care giving are not going to improve.

The church family from our last place in California is suffering through several members’ deaths in recent months.  These were folks around our age and younger, and two were without warning.   So that’s more pull on our hearts and our minds are grappling with this life’s impermanence and fragility (yes, yes, another point in favor of getting on with Joey’s transition).

Then there’s the coming transition in our marriage.  Don’t even have my heart and head fully wrapped around what empty nest will be like.  How will we be when all the decorations come down and Joey is moved out and the flurry of holiday happenings is over and we’re sitting here staring at each other across years of deferred relationship?

Might as well end this with that question mark, since there are so many things in process, unfinished and unknown swirling through our lives right now.