Killed by life

The idea of grieving the living isn’t new to me.  A grief counselor opened it up at an autism conference I attended years ago.  There are crossovers between disability and death – dreams are lost, so are familiar comforts and joys.

Today I bumped into a good article on this topic, from the American Academy of Bereavement.  In a 2015 piece entitled Unconventional Grief: Grieving Someone Alive, AAB shares good insight,

jesus-weptThis form of grief, just like grieving someone who is deceased, does not change the level of attachment to the person. Simply, this person is no longer acting how they were before and have had a dramatic shift in personality… Unlike when someone dies, you are unlikely to experience positive emotions while grieving someone alive. When someone passes, you are surrounded by the comfort of their loved ones and are often able to look at the joy of their life. This rarely happens with unconventional or ambiguous grief. Just like when someone dies, you are likely to be overcome with sadness. However, the reminder of your sadness is constant…

The article focuses on sudden change in an adult, such as drug addiction or the onset of mental illness.  For caregivers of children with developmental disabilities, the loss isn’t so much who the person used to be, but who you dreamed of them becoming.  There’s grief either way.

Read the whole thing.  There are some positive suggestions for the grieving caregiver, including this one which has been so true of living with our son’s autism,

Open yourself up to change. One of the hardest parts of grieving someone alive is that you are forced to accept a changed relationship that you do not want. It may be difficult for you to look on a loved one in a different life, but you may be able to experience a rewarding relationship with them in new ways than before. Focusing on finding joy in your new relationship will help keep your mental state positive rather than gloomy.

Finding joy in Joey-as-Joey, rather than as the Joey of our daydreams, has been an essential care giving tool and its own reward.

And Jesus opened his mouth and taught them, saying:  “Blessed are the poor in spirit, for theirs is the kingdom of heaven.  Blessed are those who mourn, for they shall be comforted.”  (Matthew 5:2-4)

 

What’s left

We are almost sitcom laugh track worth ’round here today.

Joey, our 23 year old with autism, has a nasty cough and is home in a NyQuil haze.  He’s intoning Disney movie lines in a voice that sounds like the audio of a slow motion replay.

Melissa (mom/caregiver) is suffering from a double shot – one shot of staying up all night to care for Joey and the other a shot of recurring pain from a chronic illness.  She’s closed her eyes for a few minutes (btw I think she’s pretty when she sleeps but that’s just editorializing and so I’ll move on).

Tyrion Aftermath-of-the-attack

Tyrion Lannister visits our living room today.  From here.

I (Tim – dad/caregiver) am sittin’ here typing this while my eyes keep closing and head drops on the verge of sleep.  I have the day off but I’m sleep deprived from some kind of phantom leg pain (possible arthritis although disc problem is another one the doctor threw in to consider).

We are all beat up in one way or another, but not by one another.  If anything, there’s a tenderness in the house that is surprising given how cranky pain can make any one of us.

When all else fails (and hey, what doesn’t when you’re a caregiver?), your kindness remains a gift to those in your care.  On days when all of you are hurting, you find out that everyone in the household is a care giver and a recipient of care at the same time.

Letting another’s head rest on your shoulder is a successful intervention, “How are you?” is deep communication and “Sit down, I’ll get that for you” is heroic service.

Sometimes what’s left is you, and you’re plenty.

I sent a prayer request to a friend in the midst of our family sick day, and what he sent back says it pretty well,

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (2 Corinthians 1:3-5)

Stop and stare

Today’s e-mail regarding a residential placement for our 23 year old son with autism:

Unfortunately, from speaking to XXXXX there will not be any pre-move meeting to discuss potential dates to move Joey into YYYYY. This is due to being short staff and not having staff in place at YYYYY to best serve Joey safely. According to XXXXX, staffing should be figured out by mid October I was told.

It was only a few weeks ago that we were given a tour of a place, told we had five days to decide, decided, and then received an offer for him to move in.

Now, the whole thing is

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How about a little One Republic while life’s on hold?

Stop and stare
You start to wonder why you’re here not there
And you’d give anything to get what’s fair
But fair ain’t what you really need
Oh, can you see what I see

Reading while waiting

clock

Pic from here.

On this end, we’re still waiting on a new meeting date to get our son’s residential placement going.

This morning while waiting for the bus to his day program, I ran into a young woman’s blog piece about living with her brother and his autism.

What she describes gave me a brief shiver of memory.  We endured some of this stuff for years.  Yes, our son has come a long way; no, that doesn’t erase the gut reaction when reading

First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.

And the decades between the young woman and our aging (aged?) selves evaporate as she describes our common worry,

I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?

OK, back to waiting.

Are we awake or dreaming (or both?)

Well, here it is…

Joey move invite

For those new to the game, ISP is Individualized Service Plan.  Or Ineffective Stammering Parent.  Or something like that.

Yes, that’s this week, so there won’t be much blogging going on.  The wheels or gears or whatever are in motion for our son with autism to move into a group home setting.

There’s exhilaration.  The daily chores and crises pulling me away from every thought or pleasant experience are about to end.  No more watching the clock when out to a meal or social engagement.

But there’s worry, too.  I (Tim) am having dreams in which Joey gets lost and I’m running around trying to find him, hindered by various circumstances.  I am going to miss his presence in ways I can’t even anticipate.

Your prayers and cheerleading are welcome.

Taking the show on the road

Sunday I preached at a church in Watertown, South Dakota.  That’s about 2 hours north of us.

Because our son with autism has had a string of sleepless (read active, boisterous) nights, and my wife has been up with him so I could sleep enough to work, I decided to chance some chaos and take Joey on the road with me so Melissa could sleep.

The risk is that Joey is an excellent traveler but a terrible arrive-er.  He’s fine on a long car ride or even a plane flight.  He loves looking out windows-in-motion.  But once at the destination, he starts saying, Go back to Joey’s house and doesn’t want to take part in the doings at the new location, at least while it’s strange to him.

On the way up to Watertown, I played music he likes.  He’s a big fan of The Guess Who.  He likes all kinds of music but he’s especially attentive to vocals, and Burton Cummings is no slouch.  I’ve had this Guess Who collection to play in the car for him for more than ten years.  It was important when we moved halfway across the country back in 2004.

20170723_100133Soooo… we arrive at church and Joey is calm but not social.  One person said, Joey, you can sit down wherever you want.  Which of course led to him sitting in the pastor’s seat, unwilling to budge.  The folks weren’t bothered, and they got me a matching chair.

Joey was calm throughout the service and endured listened to my sermon.  I sat next to him when other people offered readings or prayers, and he was responsive to my requests that he use indoor voice when others were speaking.

20170723_110957After the service, he wasn’t interested in visiting, even when pastry appeared.

<–This picture presents Joey’s version of what church-types call fellowship.

Again, he wasn’t agitated.  He just looked out onto the sunny day while the rest of us swilled coffee.

He was patient while I signed a copy of my book for a church member and visited with folks for a few minutes.

I was blessed by one person’s account of having worked at a state facility.  She pointed out the great changes in a very short span of years – it wasn’t long ago that such facilities were, by design, a way for families to keep members with special needs out of sight and out of mind.  Now, family caregivers are more active participants and advocates in the lives of their loved ones, even those who are in institutional settings.

I offered to take Joey to lunch, and listed some of his favorite foods to help him choose.  He resonated with quesadillas, so off to Guadalajara we drove.

20170723_114044Here’s Joey downing some tortilla chips while waiting for the quesadilla to come.  Glad he was in bright primary blue – he fit right into the restaurant’s decor.

We had a very nice lunch and drive back, with more Guess Who.

All in all, it was a sweet day.  Mom got some overdue and well deserved rest; dad and son had an enjoyable road trip.  The fear of chaos didn’t pan out and a few minor misadventures at church were more humorous than anxious.

In case you’re wondering, here’s Joey’s favorite Guess Who track,

Loneliness

Just caught some stats from across the pond,

  • Research by Sense has shown that up to 50% of disabled people will be lonely on any given day…
  • A report by Carers UK revealed that 8 out of 10 carers have felt lonely or isolated as a result of looking after a loved one.

That’s right, half of people with special needs experience loneliness in the course of a day.  But on top of that, 80% of those who care for them feel lonely or isolated – and care giving is cited as the source of the emotion.

We get that here.  Care giving wipes out spontaneity, for one thing.  A friend calls and says, “Hey, wanna go down to the bar and watch the game?” and all you can say is “I can’t” or, at best, “Well, I can watch the first quarter but then have to get home.”

Social life withers because the needs of the people in our care keep us pinned down with tasks or plain old being “on watch, just in case.”

When some neighbors invited us to join them around a fire pit on a cool evening, Melissa and I had to take turns. One of us stayed in to watch our son, the other socialized, then we switched. We couldn’t have fun as a couple.

And many folks are uncomfortable coming into a care giving environment, and friends or family who are willing can come only so often without being turned into exhausted, lonely care givers themselves.

Tony Gaines Starz

Tim (right) and his lifetime pal.

We just enjoyed a great weekend.  A childhood friend (of Tim’s) and his wife spent two days here as part of their drive around America.  They didn’t ask much of us – in fact, they were clear that they wanted to see us, not go sightseeing around Sioux Falls.

So we relaxed and shared great memories and ate and laughed and talked about what was on our hearts and minds and… were anything but lonely.  It was wonderful.

Melissa StarzOur son with autism, Joey, was his usual self, staying on the periphery until he was comfortable with the strangers.  You can see the “I’m not sure about this” posture in this picture.  But notice that he’s not detached – he’s looking right into the camera (eye contact is elusive when autism is in the house).  Melissa (middle) is obviously not feeling lonely, stressed or like a caregiver for the moment.  (Note: being a caregiver doesn’t mean you can’t be cute, too.)

The point is that any and all of you who know families in care giving mode – and by that I don’t mean just with autism, but Alzheimer’s, chronic illness, aged parents, disability and just about any situation that can confine one person and others to provide care – have great power to intrude on loneliness and isolation.

YOU are a gift.  Yeah, it’s great when a neighbor clears my driveway in winter.  That saves me some stress and strain.  But even greater is time to laugh and talk and BS about stuff.  All of that human social glue that care giving dries up, you can spill afresh by your time with caregivers and those in our care.

And don’t forget the goatherds.  They get lonely, too.

 

Wasting away in virgin Margaritaville

Warning: this post contains a graphic crime scene photograph.

Just for fun, we introduced our son with autism to virgin Margaritas.  He liked the fruit-slush result from our blender, so we’ve had them several times and it’s kind of nice to share faux-cocktail time with him when he comes home at the end of a day.

We had them again last night, and were looking forward to finishing the bottled mix off this afternoon.  Melissa suggested we have ours with tortilla chips and guacamole before Joey got home, since he tends to bogart all the chips.

So I filled the blender with what ice we had left, then opened the ‘fridge to get the Margarita mix… (here comes the graphic crime scene photo)…

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Mr. “I don’t have enough fine motor skill to hold a pencil and write” found the skill to unscrew the top of the bottle and drink all of the mix during the night.

We are retaliating by eating all of the tortilla chips without him.

Makin’ a list…

In my energetic youth I spent summers on a church camp staff.

We had a string of international participants who were building up camp director credentials.  One of them was from Switzerland, and his English was a work in progress.  One day I came into the camp office to hear him singing Santa Claus is Coming To Town, which was strange enough in summer time but on top of that he only had three words down and was singing the whole song with those.  C’mon, sing with me now,

Makin’ a list, makin’ a list, makin’ a list, makin’ a list…

Anyway we had company last night, and they’d made a list.  Some local folks who visit this blog messaged us about our son’s upcoming move into a group home.  As caregivers to more than one kid with special needs, this is ground they’ve covered and they reached out to offer help with our upcoming journey.

They’d taken the trouble to sit down and think through issues – some small and practical, others big stuff like money and emotions – and written a list so they wouldn’t forget to open up any of the subjects.

Actually, they had a couple of lists.  One was a record of residents’ share of house expenses so we could start wrapping our heads around the budget.  Stuff like trash pickup:

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The care giving community is rich in hard won wisdom.  It is worthwhile to write notes, keep records, journal, *cough blog cough* and/or just go out for coffee with other caregivers to share info and insight.  We’re all holding some great resources with which to help one another.

While I’m at it, a good spiritual habit is to list moments of grace – those unsought, unplanned moments of God’s favor.  Those unexpected Thank you, God interventions. Reviewing these can lift our spirits when the inevitable hard days show up,

And I said, “This is my fate; the Most High has turned his hand against me.”   But then I recall all you have done, O Lord; I remember your wonderful deeds of long ago.  (Psalm 77:10-11)

Last night’s visit goes on that list of God’s wonderful deeds.  Our guests shared that it was one of those God things that the first post up on their Facebook feed was our last blog about our son’s placement.  We received kind help and good company (and an addictive dessert) through that divine timing.

Allies: we have the Greatest in the heavens and so many He appoints upon the earth.  Too many to list, but how moving it would be to try.

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