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.

You open your email and…

On behalf of the Placement Committee, I would like to offer a tour at [a special needs group home] to Joey Fountain.

I like to write but all of the descriptions of my reaction to this message get trite. You know, my jaw hit the floor, my eyes popped out of my head kind of stuff.

Joey, our son with autism, is 23 now.  We’ve hoped for and dreaded this opportunity for years.  I can’t blog a whole lot on it at the moment because our thoughts and emotions are bouncing off the walls (man, this is getting cheesier by the keyboard stroke).

[Let me throw in one practical suggestion.  If you are a Google user, Google Docs is a great resource.  My wife started a document with our growing list of questions and stuff to get done as we approach the transition meetings and the move itself.  It auto-saves, so you can’t lose stuff by closing it in an emotional haze.  You can use email to invite in others (you know, your spouse and other care giving ally types), so they can open it on their screen and add to it as well.

If you are awake all night stewing about the issue (as are we), you can just add to the document and your allies will be able to see it when they open the document later.  No need to make copies and then more copies as you revise – you can all be online editing together in real time.]

In Raising a Child with Autism, I shared a lovely little vignette about Melissa raising gardenias and then wrote,

Giving away gardenias hardly compares to the “giveaway” in our future.  Joey is on a waiting list to move into a group residence.  It is uncomfortable to think about looking into his bedroom, just down the hall from ours, and seeing an empty space.  Like Melissa’s gardenias, he’s grown in beautiful ways.  And the time is coming to let him go.

That was composed in reflective calm, when the “waiting list” was just a vague background reality, something that wouldn’t really mean anything until…  until a couple of weeks ago when I opened my email and there it was, specific, real and hulking in the foreground of our lives.

I’m sure Melissa and I will share more here as we walk through this together.  Your prayers and encouragement mean a great deal.

For now, here’s a sweet picture of Joey, taken one 4th of July in Sioux Falls.  We know holidays can be a challenge for caregivers – here’s hoping that your family “fireworks” stay far off in the sky.

Smiling Joey

Father’s Day is coming…

And our book would be a great gift for any care giving dads you know!

book-cover

 

Also, we could use your help with reviews that help others take a look.  If you have the book, please go to the link and post a review on Amazon.com.

One caution: if you didn’t buy it on Amazon, they get huffy about posting your review, unless you include something specific like, “I bought this at a local bookstore,” “I received this as a gift,” etc.

Thanks in advance! Hoping to pump up to 30 reviews soon.

What day is it?

No, it’s not hump day, just Tuesday as I’m typing this.

For most folks Wednesday is the celebration of starting downhill toward the weekend.

But for caregivers this can work in reverse. Folks who take care of kids with special needs take our breaks on weekdays when schools and community programs are in session; the weekend provokes anxiety. And the closer it gets the higher the anxiety rises.

People with autism, like our son Joey, like structure and familiarity. Day programs in classrooms or work spaces provide precisely that. The weekend interrupts it. It is no surprise that Joey’s seizures, which are blessedly few and far between these days, tend to break through on the weekend at home. Melissa had to be in-home EMT on Saturday when Joey pitched out of a chair with an intense seizure.

And of course this was a long weekend, what with the Memorial Day holiday to further disorient and agitate both Joey and his caregivers (Melissa and me).

He did, at least, enjoy my grilled hot dogs and brats, of which he ate five. With buns.

Yeah, that hump day thing isn’t as happy for us as it is for most.

Note: I still don’t know why the video refused to embed in the post prior to this one. Well worth watching if you click on the embed code that’s spilled all over the page.

Mother’s Day on the Horizon

Here are a couple of good piece by MOMS of kids (little and grown) with autism:

At The Mighty, check out 15 Things I Hear as the Parent of an Autistic Child – And My Responses.

Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say…

donna reedAnd give a read to Shaunta Grimes’ Coffelicious blog, This is what it looks like to be a Gen-X mom with an Indigo Child who isn’t a child anymore.  (Strong language & content).

It’s so tempting to try to browbeat him into sleeping more. (I have no idea why it would work with a 23-year-old man when it didn’t work for a three-year-old baby.) I also find myself wanting to monitor his computer time, restrict him from drinking and unprotected sex, and refuse to let him get his own apartment because I can’t see how he’ll be able to manage paying his own bills.

It’s easy to forget that having autism doesn’t make him less of an adult with his own mind and the God-given right to make his own decisions. And mistakes.

Me?  I’ll try to get Joey to help me honor Melissa on Mother’s Day, all the while dealing with the reality that he expects any holiday to mean presents for him.