The weekend’s getting long

Holidays are seldom restful for caregivers.  Supports like schools and community centers are closed, the ones in our care can be upset by disrupted routines, and our instinctive savoring of “time off” crashes into extra hours of greater demand.

The need to pace ourselves and embrace our reality is acute.  Family care giving is not contained between punches of a workplace clock and seldom gives the satisfaction of “done.”

Memorial Day provides a long weekend.

The long Memorial Day weekend honors those who died in combat.  As one hears at funerals, they rest from their labors.

The long weekend indulges the living who have the freedom to travel, party or just be couch potatoes for a bit.

For family caregivers, it’s just long.

If you have a care giving family on your block, they might not be able to come to the park or even the party in the next yard.

But you might knock on the door just the same to drop off a plate of barbecued goodness and with your kindness make the weekend a little less long on their end.

 

“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…

 

 

Antiquetism

Our son’s 25th birthday is at hand.

Joey at DavesHe’s picked out a fave place for dinner.  They serve up his favorite burger & fries and a mound of vanilla ice cream sporting sparklers for birthday dessert.

But on the gift front, we are stalled.  We were messaging with his older brother last night, and at a loss for ideas.

His gift choice for most of his life has been movies – – – in VCR format.  (The link takes you to a piece from the Wall Street Journal, which, if you can get past the subscription sales pop-ups, speaks fondly of the technology as antique and having reached its demise.)

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Actual morgue photo.

You can still find VCRs for sale, but they’re increasingly expensive and impossible to maintain or service.  Our son is a button pusher extraordinaire, and the contraptions give up the ghost to that or to the funk of his very old video collection.

We are feeling for him.  Melissa points out that this has been one of the principal pleasures of his life, and now it’s gone.  He’s chafing at our suggestions of watching his movies on his computer, but that seems the best way to go.  He’ll trash or lose discs, thumb drives and other such media.

Anybody else made this transition?  Wide open to suggestions, both on replacement media and techniques for helping him embrace it.

Holidays and Expectations

Ah, the holidays.  Happy memories of childhood magic float into our thinking, only to crash upon rocks of present reality.

This can be acute for caregivers.  We want to enjoy the season; we want to make magic for those in our care.

48362608_10217973652521354_2826689720354865152_oWe’ve been fortunate.  Our son with autism loves Christmas.  I’ll just share this picture-worth-a-thousand-words…

But he’s also done numbers on our memories and expectations (and property and bodies) over the years.  As I wrote in Raising a Child With Autism,

Joey has taught us a lot about saying goodbye to things we valued and enjoyed. We had a set of stoneware mugs from the bed-and-breakfast where we honeymooned. He threw one and shattered it. We kept a little mesh bag of Jordan almonds from a place setting at our wedding reception. He ate them.

The smiley kid by the Christmas tree?  You mean that happy child?

As I went on to write in the same chapter of the book,

Taking care of one off-the-wall, scary child of God means that a bunch of our nice stuff will get trashed. We can go down with our things and drown in a lake of resentment. Or we can find the love in our hearts that makes the well-being of that one person worth all the losses. More than this, if we open our eyes of faith, we can see God’s love for us.

Prayers that your holiday – holy day – catches even a bit of the holy.  A little goes a long way.  Little town of Bethlehem, a baby in a manger, from what seems small comes divine blessing.

Little you in your little part of the universe – you are a blessing to those in your care.

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.

Flurry of memories

20180414_132115Much of our region is shut in by a massive blizzard today.  The City of Sioux Falls is asking people to stay off of city streets, let alone risk country roads or the Interstates.

Now that we are empty nest, I find myself remembering the anxiety that would have accompanied this kind of day when we had our son at home.  Everything would be wrong and a potential meltdown: if the weather cancelled an anticipated outing; if it prevented fulfillment of a whim for some particular food that wasn’t in the house; if any daily routines were in disarray.

Boredom would make him edgy and mounting stress could issue in a seizure.  But he wouldn’t engage in activities we tried to share.  He’d generally vocalize some demand that was impossible to meet and his tension would escalate.

Today he’ll be in his group home.  He has his own room with a computer and movies in case he wants to be alone.  There are common spaces with things to do if he wants company.  And there are staff there with the residents doing what we used to do, and we are grateful.

Stressful days are not limited to snow days when it comes to autism and care giving.  School vacation or “in service” days, when routine is removed, can be walks through hell.

My respect goes out to all who are shut in today, be they people with special needs or their caregivers.  Whatever inconveniences and challenges most of us endure, they have an extra helping or two.

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.

Voices

Those in our care have values, pleasures and priorities.  As family caregivers, we are often best able to recognize and interpret those to the world should the people in our care have any communication impairments.

But there are many who receive care who are quite able to speak up for their own lives, like this young man,

Seriously, I have a great life!  I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn’t have to jump the fence either time…Surely happiness is worth something?

Sometimes we have to be advocates.  Sometimes we just need to listen, affirm and encourage.

As many Christians around the world observe our Holy Week, we do well to remember that the One we honor and proclaim listens to voices we ignore or shut down,

People were bringing little children to Jesus for him to place his hands on them, but the disciples rebuked them.  When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”  And he took the children in his arms, placed his hands on them and blessed them.  (Mark 10:13-16)

…Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside.  And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!”  And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.”  (Mark 10:46-49)

Jesus walked through our world announcing that no person was inconvenient or unwanted.  He spoke up for the voiceless and heard the cries that others sought to silence.

He still does.

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.

Transition

Miss me yet?

Nah, if your life is like mine, you’re up to your posterior in reptiles.  Who cares if some dork blogs about stuff when you have more stuff than you can handle?

About a month ago I wrote happily about our son’s move into a group home.  Reports from the staff continue to be positive.  Heck, last weekend Joey was selectively communicative but smiley just the same when we asked him about the group’s trip to see Disney on Ice. (Random thought: with temperatures dropping here I could probably show a Disney movie in my backyard and call it Disney on Ice.  But I digress).

For now, we have him stay at the new place Friday night through Monday morning.  He spends the “work week” here with us.

So, what’s this like, this zone between empty nest and care giving?  It’s a bit of both.  No, a lot of both.  A word that my wife taught me comes to mind: Transition.  Of course I knew that word in some contexts, but she taught me about it as applied to childbirth, 

This is the hardest phase but also the shortest

Well, let’s hope it’s short.  I mean, the last “phase” was 23 years so this should be a flash in comparison.

Here are some stray things I’m observing and processing.  Hope they might be helpful to you if you are thinking about or in the midst of this kind of transition:

  • Yes, some chores go away.  But others pop up.  He’s technically a tenant now, so I’m writing his rent, utility and activity checks.  So all of a sudden I get extra of one of my favorite tasks, bill paying.  Yep, there’s a flurry of new paperwork in my life.
  • The peace and quiet and laid back pace when he’s not here are wonderful.  All that stuff you hoped/are hoping for?  Yep.  No middle of the night interruptions.  No bathroom accidents.  No holes drilled in your head by verbal perseveration about this and that.  No structuring your day around care giving routines. Coffee tastes better, hot strangers ask you out on dates, the moon is in the seventh house…  OK, I’m exaggerating.  But this big change is a real and overdue blessing.
  • Life continues to dole out rations of crud.  All the other stuff that you were ignoring comes into focus.  Our years-past-the-average-lifespan-of-her-breed dog is having various symptoms of her advanced age.  And so we have the discussion of spending lots of bucks to keep her going or to play the bad guy and have her put down.  Yes, the new freedom is nice.  But life continues to do its thing in your face.
  • Emotions bounce around.  And I mean for all of us.  The other day Joey kept bringing up “donuts and pizza,” a sweet dad and son routine we’ve been having on Saturdays for years.  He misses it.  When he vocalized it, it went right to my heart and it frigging tugged.  No, not tugged.  Applied a wrestling finishing move.  Mom reads the emotions in Joey’s eyes.  She can see he’s struggling with the change – not that he can’t handle the routines and activities of the new place, but that he’s homesick for our place.  So is the lesson that providing a loving home will come back to break your heart?  (Man, sorry, now I sound like sappy pop “Christmas” muzak.  But I digress, again.)
  • Challenging discussions come up.  Should our response to his objections be to immerse him into the group home more aggressively or to prolong his weekended status until he stops lamenting?
  • Holidays are a mixed bag.  The house is filled with familiar decorations and activities that Joey loves.  Having him home much of the week is, we hope, reassurance that life as he knows it isn’t over.  We’re still including him in fun with people he knows and adores (and who reciprocate that affection!)  But the emotional upheaval of a big transition in these tender times adds pangs of pain.  (Dang, this does sound like childbirth).

In other news, Joey brought home some seasonal arts and crafts pieces from his day program, among them this little wreath ornament:

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It’s the only ornament on our tree right now.  We are having a bunch of friends over on an upcoming night to have pizza and other good stuff with Joey and to help us finish decorating the tree.

The green holds the hope of spring against the winter gloom. Transition is the short, painful phase that gives way to the birth of a new life.

Hope to share more soon.  Meanwhile, my prayer is that you find blessing in all of your transitions.