Workplace impact of care giving

Good quick read at ThinkAdvisor.  It won’t surprise you if you’re a caregiver. But I hope it reaches you before you get to the point at which I found myself a few years ago.

…approximately 68% of working parental and spousal caregivers said they were subject to at least one of eight different effects on their jobs because of providing care to a loved one.

There is a link to the full Government Accountability Office report, which includes this graph of the eight workplace effects,

Caregiving workplace impact GAO

Raising our son with autism piled up stress over the years, and in a job which required intense people work and difficult decisions, I began to falter.  I suffered a number of these effects,

  • Care giving situations made me come in late, leave early or miss work altogether on a regular basis.
  • “Leave of absence” and “left work entirely” merged in a catastrophic case of burnout.  The 24/7 stress of workplace and care giving demands led to poor decision making and lack of energy at work, eventually diagnosed as depression and off the charts anxiety.
  • Although I received some kind help that got us through and got me back into the workforce, the financial fallout is still with us.

My advice from hindsight is to trust your instincts.  Don’t try to “fake” or “tough” your way through when you sense you’re in trouble.

When you know that “this isn’t working,” initiate adjustments.  Talk to your employer about the situation – a change of shift, department, location or even position within the organization might be helpful.  Reduced travel time, better synchronization with family schedules and other time impacts might be available.

Begin to crunch numbers and, if you’re married, get into a substantive discussion with your spouse.  I was so ashamed of what I was feeling that I tried to “handle it” myself – working as a couple might have generated solutions that I missed.  What changes of income are needed?  If more, what can your situation tolerate in terms of more hours or travel?  If income must come down, what can be cut out of current spending to accommodate the change?  What options, if any, does your spouse have on the money front?

Don’t make major decisions in the midst of emotional upheaval and don’t make them alone.

Value and stand up for your insights when you know you’re right.  Caregivers get used to being flexible and not insisting on our way in order to roll with the needs of others.  But sometimes we need to draw lines and make decisions for the family good.  It’s too easy to back down and do what we think will keep things “calm.”  All we do is create a ticking time bomb emotionally, financially, in relationally and, if working, professionally.

Yes, follow the constant advice to “take care of yourself.”  I know, I know… I heard and ignored it too.  Eat right, get sleep, exercise and nurture your mind and spirit.  Seek God’s presence – but watch out for magical thinking.  You know, “If I pray hard enough or make enough sacrifices, God will fix this.”  God will help you to endure and will guide you, but the “fixes” will often involve uncomfortable commitments and actions.  Make the right choices, guided by the moral teaching you claim to follow, rather than making compromises that temporarily ease your stress.

It’s never been the position of this blog to lecture you from a point of expertise.  So I hope that sharing my profound failures is a useful way to reach out and help.  Please take good care of yourself – those in your care need you to be you.

woulda shoulda coulda

I’m coming off a very sweet weekend in which Melissa and I marked 29 years of marriage (the large part of it as caregivers) and many kind people graced my retirement from church leadership.

It is one of those forks in the road where I guess I’m supposed to type memoir-like thoughts.  But I’m not.  The fork is not confusing and I don’t need to linger; I know where I’m heading next, at least in the short term.

I’ll be working at a local hospital in a specific kind of work, sterilizing medical implements.  It won’t be the kind of people-work that rides on one’s back all the way home and then sprawls all over one’s family and personal life.

I’m glad for it.  I applied for some other, more lucrative public service positions, but those didn’t come through – and in short hindsight I think that’s a blessing.  I couldn’t have given the emotional quality of work they needed.

The decades of family care giving simultaneous with the emotional demands of church leadership took a toll.  There were various highs and lows, but I’m not going back over them with a lot of “woulda shoulda coulda” self-absorption.  They were what they were.  I lifted a lot of people up and I let a lot of people down.  Such is human life.

20190528_080723Looking at myself honestly in the here and now, I can say that I have a good number of emotional punctures.  Not enough to incapacitate me or require major repair, but enough to know I need to keep things as simple as I can.  I’m like a garden hose with some nicks – sure, it’s not perfect, but it’s not time to throw it away.  It gets most of the water where it needs to flow.  A spot of duct tape and all’s well.

Care giving takes a toll.  I say that without shame.  It’s diminished me in some ways.

And I know it’s improved and enriched me as well.

If you are a caregiver in the trenches, you’re not crazy and, most of all, not a bad person (more than any other ) when you feel your nicks and leaks.   Care giving is costly.  As is anything ultimately worthwhile,

…through many tribulations we must enter the kingdom of God.  (Acts 14:22)

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.

And just like that…

ditch

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)

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.

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)

“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)

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.

No respite, no completion?

Most of what we blog here is about the current stresses and strains of care giving.

This morning I blundered into an article that shows how it can clobber our future.

The sandwich generation — those who have children and at least one living parent — is having a hard time saving for retirement because they are spending a good percentage of their money taking care of family members.

The steady flow of emergencies (they’re often the normal state of things) generated by care giving can lead to job loss or change and the temptation to cash out retirement savings for quick cash,

As of May 22, approximately $26.3 billion in total savings has been cashed out of the retirement system this year, according to the National Retirement Savings Cash-Out Clock. If nothing is done to stem the outflow, this cash-out “leakage” of assets from the retirement system will reach $68 billion by year-end.

This is a major financial health crisis affecting millions of Americans — and industry research indicates that younger workers in the lowest income brackets, as well as women and minorities, are at the highest risk of cashing out. Confronting this crisis requires a concerted, unified effort by plan sponsors and record-keepers to create conditions that facilitate seamless plan-to-plan asset portability for all participants.

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Sure, piggy banks are traditional, but who’s gonna rob a sharky bank?

The article offers some good suggestions, both for caregivers and for their employers. Go have a look – it’s not all gloom and doom but it calls for some work.

And ain’t that just what care giving is all about?

Not Fabio but he’ll do

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After all my work to get in shape, this cover was rejected.  Dang, wish I’d a thunk up that title, though!

The cover design credit for Raising a Child with Autism goes to Elaina Lee, who worked with our publisher on the concept.

Our initial suggestion was that the cover be more cartoonish and humorous – maybe a confused guy holding a leaky hose over a withered plant.  Our working title was Blooming Idiots, intended to reflect the on-the-job, trial and error (lots of error) learning  that comes through care giving.

But our publisher had a wise insight as release date drew near: Can you imagine a Facebook status or tweet something like, “Just read a #book about #autism called Blooming Idiots” ? People are going to think you wrote a book that calls people with autism idiots.

Darn it, we liked that title.  But the publisher was spot on.  Sampling the title around to potential readers indicated that it provoked a negative reaction, as if we were using the R word.

So, we tried to go artsy and suggested stuff like Our Family Garden.  But that made it sound like a book about, well, gardening.

Finally, the publisher decided to go with a straightforward approach, and Raising a Child With Autism went on the cover.

That didn’t lend itself to our original cartoon concept, so the cover art team went with a sweet image of weathered, older hands and tender toddler hands holding some earth with a sprouting plant.

We had problems with it.   One was that it was too gentle.  Our hands and Joey’s hands didn’t always work cooperatively.  Care giving verged on combat much of the time.  Plus part of our story is how Melissa and I labored together as a couple, and the cover concept featured just old guy hands and no mommy presence.  The artists went back and tried to capture that, but the result was too busy and would have cluttered the cover.

book-coverSo Elaina Lee creatively and rightly shifted the focus to the child, and that’s the cover you see.  No, that’s not Joey.  He would never wear a hat because of his sensory issues.  He is seldom that still and focused.  And as we share in at least one chapter of the book, he can be pretty hard on plants.

But he does smile, he does delight in simple things and our reward as care givers comes through those kinds of realities.  So there’s a sweetness in the cover that rightly draws the caregivers toward the person in their care, and the hope and joy found in new life blooming.

Interested in your thoughts on the cover.  What does it say to you?   And how would you symbolize your experience of care giving?