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)

“To The Other Mother”

Greet Rufus, chosen in the Lord; also his mother, who has been a mother to me as well.  (Romans 16:13)

Joey 21 McNally

Mother’s Day is here  – let’s show some love for all the moms!  I want to honor Melissa, not only for giving birth to our two sons, but for the long term momming that went into raising a son with special needs to adulthood.  (re: the picture – no, he doesn’t drink.  It was just a milestone to celebrate his 21st birthday in a place that required him to reach 21.  Strictly a burger run).

I know from years of church experience that piling on the Mother’s Day sentiment can have unintended consequences.  Women who are not birth moms, or who can’t be, or who lost a child, or who are estranged from their kids might perceive a “second class female” label being slapped on them when church services set aside the Gospel and function more like a Hallmark holiday.

I don’t think that means we should eliminate Mothers Day but we should be aware of its limits.  Giving birth is not the only value to a woman’s existence and, frankly, there’s more to being a mom than giving birth and having a baby shower. We need to watch out for romanticizing and minimizing what should be serious, sacrificial and lifelong effort.  (Motherhood in this fullest sense is quite Christ-like).

The full expression of motherhood involves care giving.  I’ve watched Melissa’s role continually evolve as our boys age.  She’s always their care giver, even as they grow in adult independence.  She continues to be a source of “home” for them, even across distance.

I quoted Saint Paul at the top of these thoughts.  In an easy-to-skip ending to one of his letters, where he’s writing a lot of “Say ‘Hi’ to so-and-so” pleasantries, he mentions a fellow Christian named Rufus and then asks his readers to greet Rufus’ unnamed mother, who, Paul writes, has been a mother to me as well. 

What form this took we don’t know.  We know that Paul’s ministry kept him on the road; perhaps Rufus’ mom gave the Apostle a sense of home base and family when he visited Rome.  Paul mentions ailments in some of his letters; perhaps Rufus’ mom gave him respite and comfort.  And Paul’s life was full of hardships and hostile confrontations; perhaps the mothering he received from this unnamed woman was in simple hospitality, human warmth and affirming words when they crossed paths.  In a world that beat Paul physically and emotionally, this lady’s glad hug and smiling “Welcome back, stranger!” would have been the medicine of motherly love (I remember the days when our kids seemed to get better from bugs by just sitting on Melissa’s lap for a bit.)

In her book Teaching Diamonds in the Tough, Cleo Lampos includes a chapter entitled To The Other Mother.  She lauds those who step in to give care in ways that make them mothers to the world’s needy children of all ages,

DiamondsIn our family, my Aunt Lois served as our unofficial foster care system.  At one time or another, Aunt Lois took care of most of my cousins for varying lengths of time and for differing reasons.  Her frame house in mid-Iowa became a refuge for my sister and me for over a year as my mother battled with an alcoholic husband in another state.  Aunt Lois provided stability and protection at a time when my sister and I displayed emotional signs from abuse.  She infused us with hope because we had lost ours.  Aunt Lois became “our other mother.” 

To women like… Aunt Lois, a lot of adults owe debts of gratitude that can never be paid.  The “other mother” saved our lives.

So I take this Mother’s Day on the calendar to give thanks for all of the mothers on the job out there; those like Melissa who gave birth and continue to nurture those lives decades later,  and to all the “other mothers” who give care and bring forth new life when others have the blues…

 

 

Two deaths, one love

Jean Vanier died on May 7th.  He was a gentle presence who moved people to significant action and life changes.  I was privileged to hear him speak about twenty years ago in Southern California.

Vanier founded L’Arche and Faith and Light,  now more than 1,500 communities in which “people with and without intellectual disabilities” live more as families than as professional caregivers and patients.  As Vanier said of L’Arche,

Genuine healing happens here, not in miraculous cures, but through mutual respect, care, and love. Paradoxically, vulnerability becomes a source of strength and wholeness, a place of reconciliation and communion with others.

He translated family-style care giving into “institutions,”  encouraging vulnerable amateurs to practice companionship and respect rather than technique.  His approach has been replicated in communities around the world, and to needs beyond intellectual disabilities.

Today…

Bill… I went to the conference center at the community agency that is the home for our son with autism.  They were holding a memorial service for Bill, one of the four other men with whom our son shares a group home.  Bill died late last month.

The seats of the ample conference hall were filled.

The current staff and residents, including our son Joey, were all there.

Other employees of the agency were there.

Other recipients of agency services came.

Former employees who knew Bill, including the Pastor who led the service, were there.

When given an opportunity to share memories of Bill, there was no lack of speakers, prepared and impromptu.

A message that echoed through the memories recalled the values that Jean Vanier carried in his work and that many caregivers who’ve never heard of him carry in theirs:

We’re not staff and clients, we are more like family.

There was a slide show of Bill’s life and a display of his favorite things.  The whole event reflected “person centered care,” valuing Bill not only as part of the community, but as an enrichment of it.

Bill’s warmth – manifested notably in a thunderous Hi! and sweeping wave of his hand to group home visitors  – was a gift to our family as we went through the emotional time of transitioning our son into his new house.  We trusted the staff and liked the house’s set up, but to experience immediate warmth like Bill’s was an extra that softened the big change in our family’s life.

Bill’s loved ones donated his belongings to the home to use as needed, and Joey inherited a recliner chair that he’d coveted and attempted more than once to occupy.  We will still think of it as “Bill’s chair.”

Jean Vanier, known around the world, and Bill, loved locally, merge into one.  Both reflect a community of love – relationships entered into vulnerably – as the model for care giving.

I came away from Bill’s service red eyed but uplifted.  The community is diminished, temporarily, yet lives in love.

Whatever their gifts, or their limitations, people are all bound together in a common humanity. Everyone is of unique and sacred value and everyone has the same dignity and the same rights.  (Jean Vanier)

…we are to grow up in every way into him who is the head, into Christ, from whom the whole body, joined and held together by every joint with which it is equipped, when each part is working properly, makes the body grow so that it builds itself up in love. (Ephesians 4:15-16)

Hi!  (Bill Wilde)

 

Rules of Engagement

APRIL IS AUTISM AWARENESS MONTH.

Yeah, this post’s title is a military term.  Rules of engagement tell you when you’re allowed to shoot back.

Sometimes care giving feels like combat, albeit in non-lethal form.

One particular battle is the effort to engage people with autism in collaborative behavior.  I was going to say meaningful behavior but that assumes that people with autism are absorbed in meaningless behavior on their own, which is not true.  Their behavior has great meaning to them, even if we can’t always crack the code and understand it.  And who knows, maybe they perceive our antics as meaningless.

OK, back to collaborative.

Our 25 year old son with autism, Joey, lives in a warm and supportive group home here in town.  Our custom is to pick him up on Sunday afternoons for dinner and an overnight with us.

We try to engage him in play, household activities or just chit chat.  None of these have ever been among his favorite things.  And as we shared a few weeks ago, his priority right now is to negotiate and nag about an unavailable form of entertainment he used to enjoy on his own.

So there’s some creative combat as we try to get him to say or do anything besides chanting “VCR will be here soon.”

Music usually engages him, but he’s figured out that playing tunes on our computers or phones is our effort to stifle the VCR negotiation.  So he either covers his ears and stomps away, whines “No MUSIC” or, wonder of wonders, forms a sentence to say, “I want quiet, please.”  Which is collaborative communication, except it leaves us all staring at one another non-collaboratively.

So I ran and got some picture books from our years of accumulated kids’ books.  We got a few smiles out of him with our funny character voices,  but he would not sit on the couch with us to look at them, let alone read with us.

So Melissa continued to try an engage him in talk or music while I huffed away to empty the dishwasher (does he think I’m engaged in meaningful behavior when I do that?  Do I?)

Then a little light bulb fizzed on over my head.  I said, “Hey Joe, come in here with dad.”

He glowered at me.

“Come on and help dad,” I chirped.  “This will be FUN!”

He uncurled from the couch and stood looking at me.  I indicated the silverware drawer.

20190331_213344“Help dad put these away.”

I handed him a butter knife.  Lo and behold, he put it in the slot with the other knives.

“Good job with the knives,” I oversold the moment.  Then I gave him a salad fork.

He put it in with the other smaller forks.  That was impressive, as he could have just mixed it up with the larger dinner forks.

I commenced praising him and called out my delight to Melissa.  I was going to move on to spoons, but he made an annoyed face, sounded off with his go-to word, “NOOOO,” and returned to the couch.

We counted the night a success.  Caring for people with autism requires rejoicing in small victories, connections that might seem trivial in what we perceive as normal life.

We’re still refusing to chase after another VCR.  But we are adopting a puppy.  And we’re provisionally excited, because Joey made eye contact and whispered “Yes” when we told him about it and Melissa showed him pictures like this one:

20190330_130429

This little guy is named Henry.  We hope he will help us with some fun engagement with Joey.  That is, once Henry’s done eating Melissa’s glasses.

So, what forms of engagement reach the one(s) in your care?  Always open to new tactics.  What works with one person with autism doesn’t necessarily reach the next one.

Very often, the most loving care is to keep showing up, trying again or trying something new.

And sometimes just showing up and letting them be.

Are you a family caregiver or know someone who is?  Consider getting or gifting our little book for this Autism Awareness Month.

 

Maybe Next Year

Growing up in L.A., I was a fan of the Los Angeles Angels when they were a brand-new American League expansion team. When I was a kid, they played in the stadium named for the “real” team: the Dodgers.

But in my childhood, they were a “maybe next year” team. Maybe next year they would win more games than they lost. Maybe next year they would climb up from the bottom of the standings.

We have a “maybe next year” tree by the street in front of our house. We needed a tree out there to block some of the summer sun that routinely fried our lawn. We also craved fall color, so when a landscaper showed us pictures of a maple called a “Fall Fiesta,” we said, “Wow, look at all those fiery leaves! Put one in right now!” So he did. And all the budding leaves fell off, and the tree went dormant. We looked at our bare little tree all winter, praying that dormant was something different from dead. The tree budded in the spring. Of course, it hardly cast any shade, little thing that it was.

img_20161021_173959

The tree done good!

The next year was better. There was noticeable fresh growth on top. It grew taller. Its leaves seemed fuller. It didn’t shield the lawn from the sun, but it cast a respectable shadow where the dog liked to pee on hot days. There were some deep red leaves in the mix for autumn. Each year adds.

Like waiting on a plant to bloom, taking care of an autistic person requires patient hope. Your heart, and maybe your mind, will break if you are into precise timelines. “Next September our kids will achieve ‘X’” must be held loosely. “X” might happen in October, or November, or the following spring, or September two years out, or not for a very long time.

Like hopelessly loyal sports fans or amateur gardeners, caregivers have to keep telling themselves, “Maybe next year.” And in the next year, or tomorrow, or a few seconds from now, a once-abandoned hope arrives as a surprise.

Gardeners like ourselves must learn and relearn “deferred gratification.” We might want to stick a stalk in the ground and see a tree the next day, and we want to think that one or two sit-downs with an exercise book will have our kid reading literature in time for kindergarten.

But when it comes to caring for someone with special needs, it is important to hold a goal patiently. If it is a good goal, it is worth holding onto in heart, mind, and habits over many seasons.

Like travelers using the four cardinal directions on a map, people who follow Jesus find spiritual orientation from three cardinal virtues: “faith, hope and love” (1 Corinthians 13:13 NIV). Hope keeps us looking to the horizon, to what’s next. We hope for what we do not see or have, but believe what can be out there. Hope allows us to act with purpose, believing that our efforts are worthwhile and taking us toward a good destination. It means long seasons of waiting, of doing the right stuff over and over even when a desired result isn’t coming into view.

When we come to terms with hope, we find that it isn’t really about a particular event, thing, or outcome, but it’s about coming face-to-face with the one who is calling us forward.

Edited and shared by the publisher, from my book.

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:

20181202_083734

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.

Master’s Degree in Grumpy

Sorry to have been incommunicado for so long.  Various aspects of life have run over me like a train of late.

This morning a friend was asked about her laid up spouse, “How is he?”

She replied, “He was very grumpy.”

I actually had something to say about that and I’ll repeat it here,

 

sophia behind me

Sometimes grumpy just sneaks up and whispers in your ear.

…”grumpy” is a frequent state for someone in your care. I interact with lots of other caregivers and it is one of the most frequent laments – “Why is the person I’m taking care of so nasty to me sometimes?” The loss of health and with it the loss of freedom, power, and whatever else gets dumped on the person who is loved, trusted and, unfortunately, in firing range. Praying for your husband… and praying for you as you help carry this cross.

To which she replied,  “Tim, that was brilliant and you’ve changed my life so much for the better.”  “Well my hubby has earned a master’s degree in grumpy lately. Even his legendary sense of humor is in recession.”

Grumpy goes with the territory in care giving.  It’s one more stinky pile of what we walk through.  We need to remember that those in our care would give anything to get up and walk freely through something, even a stinky pile of whatever.  And whether we recognize it or not, they sniff out the bad moods we try to hide from them.

Grumpy goes both ways.  God help us all.

Meanwhile, there’s a little snippet from my book for your free perusal over at the publisher’s site. I think I needed my own words this morning,

All people deal with having familiar things plucked out of our lives. And many of us suffer with minds and emotions conditioned to regard such uncomfortable experiences as punishments.

No wonder we’re grumpy.  Hang in there, friends.

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.