Parts Unknown

Some say care giving, especially the parenting of a person with autism, can put strain on a marriage. [Let me note that there’s fresh evidence to refute the claim that it leads to a high proportion of divorces – it might actually be that care giving parents pull together in love and service to their child(ren).]

But Melissa and I experience conflict over this man.

I’m into his shows. I like the deep dives into other cultures through food and human interest.

Melissa thinks me weird. She dubbed him “The Food Guy” and, when I really got into his comments about the inner darkness of writers, she put him on her index of people/shows/events that I like but that she can take or leave (emphasis on the latter). She gives her own titles to such people/shows/events. For example, Michael Chiklis in The Shield was “The Scary Guy” (although that show won her over); Jeremy Wade’s show is “Scary Fishes.”

So I bring up Bourdain because he is a chef and his writing and TV work explore the world through food.

I must confess that one of the rewarding, pleasurable things about care giving is that it’s made me a better cook. I was telling Melissa just the other day how much I find myself looking forward to making a nice Sunday dinner for our family.

She’s praised some of my dishes as “better than restaurant food,” and I am encouraged by such praise.

Last night, I made something that Joey should never, ever, not even come close to enjoying. I baked chicken and served it with sauteed fresh green beans and Vidalia onions. After I hand fed Joey enough to get his evening medications down (he won’t take them any other way), he devoured the rest of the bowl. Not even a green bean or onion fragment to be found. I could have cried, I was so honored.

So here I am, cook and blogger, in Parts Unknown – the world of care giving. In some ways, it’s made me a better person, both in skills and in character. But I’m still a writer at heart, and I’ll let Bourdain have the last word,

Writers as I know from looking in my own dark heart, are generally terrible people. Put ten of them together and it’s like putting your head in a bag full of snakes.

Burpees

The gym where I maintain health, release stress, listen to loud music, etc. likes to throw in “active recovery.” What’s that?

Well, it is throwing in exercises as “breaks” between other exercises. Basically some gleeful sadomasochism. (The instructors do this stuff along with us, so it isn’t clear who’s the sadist and who’s the masochist.)

Here’s one of which they’re fond,

Care giving is like a bunch of burpees thrown into all the other crud life brings.

Today I got an email from a friend at church,

Won’t be at Bible Study today. Have to take (spouse) to the doctor.

Over the last two years, she’s had to assume more and more care giving in the follow up to several surgeries her husband’s had for a variety of ailments. Just when things seem to settle down, another problem comes up, more serious than the last.

I should mention that these two are grandparents, who’ve already done decades of care giving in the lives of their kids. It’s like a cosmic gym instructor said, “If you’re not out of gas yet, let’s do some burpees just for fun.”

HOO-rah and woo-HOO

Need New Underwear

That’s what Joey had to say this morning.

It’s not “Happy Father’s Day” but I’ll take what I can get.

JOEY YucaipaOn the other hand, Melissa posted a greeting on his behalf with a couple of cute pics, including his much loved baby face. When it was fine to get him new underwear. 21 years ago.

cat brushingOh well, at least the cat came out and nagged me into her morning brushing.

From all of us, a Happy Father’s Day to all dads. Double that for the caregivin’ dads out there.

The Prayer of the Distressed and Depressed

Psalm 88 is up in my morning prayer cycle. If you’re not familiar with it (not surprising as it’s seldom read in church) have a look and understand that God himself breathed a prayer for those in the darkest, foulest moods. It is a prayer of depression, of sensing the world as dark and hopeless.

Yes, it is in a minority of the prayers offered in Scripture. Rightly so. Jesus Christ is Good News. Faith, hope and love are guiding virtues.

But as one of my church’s Bible study groups read yesterday, Jesus points to himself in the Psalms. Psalm 88 reminds us of his abandonment on the cross, his staring into the absolute darkness and terror of divine wrath, and likewise assures us that the hopelessness of the Psalm is also a space where “he may dwell in us, and we in him.”

Sometimes despair means we’ve misread things, and he will guide us from fear to faith. Other times our hearts are broken as we mourn real tragedy or evil, and he blesses us for sharing his heart. And we know that in some cases what Psalm 88 reflects is organic – a besetting and crippling injury – and he is with as as the miracle of grace, not judging how well we “deal with it” but making us right with God whether or not we can.

Psalm 88 (Book of Common Prayer, 1979)

1 O Lord, my God, my Savior, *
by day and night I cry to you.

2 Let my prayer enter into your presence; *
incline your ear to my lamentation.

3 For I am full of trouble; *
my life is at the brink of the grave.

4 I am counted among those who go down to the Pit; *
I have become like one who has no strength;

5 Lost among the dead, *
like the slain who lie in the grave,

6 Whom you remember no more, *
for they are cut off from your hand.

7 You have laid me in the depths of the Pit, *
in dark places, and in the abyss.

8 Your anger weighs upon me heavily, *
and all your great waves overwhelm me.

9 You have put my friends far from me;
you have made me to be abhorred by them; *
I am in prison and cannot get free.

10 My sight has failed me because of trouble; *
Lord, I have called upon you daily;
I have stretched out my hands to you.

11 Do you work wonders for the dead? *
will those who have died stand up and give you thanks?

12 Will your loving-kindness be declared in the grave? *
your faithfulness in the land of destruction?

13 Will your wonders be known in the dark? *
or your righteousness in the country where all is forgotten?

14 But as for me, O Lord, I cry to you for help; *
in the morning my prayer comes before you.

15 Lord, why have you rejected me? *
why have you hidden your face from me?

16 Ever since my youth, I have been wretched and at the point of death; *
I have borne your terrors with a troubled mind.

17 Your blazing anger has swept over me; *
your terrors have destroyed me;

18 They surround me all day long like a flood; *
they encompass me on every side.

19 My friend and my neighbor you have put away from me, *
and darkness is my only companion.

14 things that people who are addicted to food understand…

Food can become therapy instead of fuel. Caregivers are vulnerable to unhealthy comforts and even addictions to cope with accumulated (and accumulating) stress. Blogger Robynchristi has some fun with it – have a tension cutting laugh but also think on what “comforts” are actually hurting your life.

On a personal note, Melissa and I’ve both made lifestyle changes that have helped us lose lots of weight (close to 100 lbs. between us) in the last couple of years. The gains in energy, emotional clarity, overall health markers and more have been worth the discomforts.

A Girl In Europe

I’m writing this with a face full of pasta and a smile on my face…

1) During one meal, you’ll be already thinking about snacks or about dessert.

2) Salad is simply an addition to dinner not a WHOLE dinner.

3) You think you might have been born a cow because you’re pretty sure you have 3 stomachs.

4) People ask you constantly ‘HOW?’ When it comes to how much you can eat.

5) You spend probably more money on food than clothes.

6) Sometimes you eat so much you get a little food baby.

7) You know food hangovers are a real and difficult danger.

8) All you can eat buffets are a challenge not an offer.

9) People always ask you where you can get the best/cheapest/pretty okayish food from because you know all restaurants (and kebab shops) in a 50 mile radius.

10) When you’re in the…

View original post 100 more words

Care giving stinks but coffee smells good

Here’s a chance to have some fun and also support other caregivers.

Caregiving.com is a great site with lots of resources, including some chats and other forms of real time support for folks in all kinds of caregiving situations.

Tomorrow (Friday, June 19) you can have some fun as part of “Coffee With a Caregiver.”

Now, don’t get yourself frustrated. If you’re not internet or camera friendly, this might not be the event for you. But if you are (and if you’re reading this you must be somewhat of a computer person), go register at the site and prepare to share a picture of your coffee or tea and an encouraging message at 10 EST (9 Central, 8 Mountain, 7 Pacific) tomorrow morning.

IMG_20150618_121832_424You could win a Starbucks card, but more than that you could be the one to bring a smile or an emotional embrace to a caregiver’s day.

This isn’t the mug (or the message) I’ll be featuring there tomorrow, but this one is on my office desk and there are my bride and sons huddled ’round my crusty cup.

S#*t I won’t miss

Traffic 1 I’ve been on a positivity binge of late, haven’t I? I apologize. I mean, how does that facilitate venting? How does it convey “care giving stinks”?

So here’s a click-to-enlarge picture-> of the normal afternoon traffic hell that follows picking up Joey at his program.

The path from the facility to our house includes an infernal intersection. The cars in front of me are stacked in a line with no traffic light to give us access to the major, busy street ahead. And the drivers on that street are inattentive lumps of upholstery filler when it comes to leaving space for us to get in. Fat women in manic conversation on phones tucked in their chins and scuzzy guys fiddling with their cancer sticks pull across the intersection, even when the traffic ahead of them is stopped by a red light. Traffic 2 As you can see in my rear view, more cars are piling up in the lame hope that every five minutes or so a rare alert driver on the big street will let one of us make a right turn to join the moving traffic.

Yes, care giving stinks. Chores – endless rituals of service that are expected rather than appreciated and ordained rather than chosen – are a big part of the stench.

I love our kid. I love the good programs he attends and the great people who provide them.

But this stupid afternoon drive I will not miss.

Sometimes it’s substance, not symptom.

IMG_20150608_151518_420 So this fellow is Scottie.

We are at the reception following his grandfather’s funeral.

Yes, Scottie is wearing a Pittsburgh Steelers’ Mean Joe Greene jersey.

His mom did all the right stuff in the run-up to the funeral. She explained death in terms relevant to Scottie, mainly that grandpa would not be here to visit anymore. They are a Christian family, so Scottie has eternal reference points from which to find understanding and comfort, too.

Several days ahead of the service, she prepared him for it, explaining where it would be, what would go on, and how lots of family would get together to eat and talk about why they loved grandpa. Included in the preparation was the clear understanding that Scottie would wear his suit and tie. (Note: I’ve seen him in it and he is stylin’).

But when the day came, Scottie wasn’t into the suit. He insisted on the Mean Joe Greene jersey.

Folks familiar with special needs might start to think, “Uh huh. Sensory issues. The suit is unusual and uncomfortable and he likes his jersey material better.”

But Scottie was able to articulate that the jersey was important in his relationship with his grandfather. Grandpa was from the Pittsburgh area, and Scottie used to wear the jersey to grandpa’s and root for the Steelers with him.

The jersey was Scottie’s sign of love and respect, in the same way that most of the rest of us might wear a suit or a formal dress to a funeral.

When our son was a little guy, he used to come in our room and yell “t shirt!” It took us a while to figure out that he wasn’t insisting on what he wanted to wear, but was telling me to put on a t shirt. He knew that if I was in a t shirt, I wasn’t going to work and could be home with him. It was an expression of affection.

Some of the choices made (OK, demanded) by people who live with autism and other special needs have an important, well conceived meaning. They’re not all symptoms of sensory issues or other things that need diagnosis. They’re efforts to touch our hearts, if the pathways of our very different minds can meet.

Wat?


See more on Know Your Meme

Denizens of Facebook probably know the “wat lady” meme. It is used to express surprise bordering on incredulity. (Sorry, enough running wild with words. It means that something seems ridiculous.)

One thing that can take care givers down emotionally (and, along with that, physically and spiritually) is the seeming meaninglessness of our efforts. Long, stinky seasons that don’t seem to change anything for the better.

The Caregiver Space is a helpful site and shared a link to one woman’s testimony to her parents’ stinky lives in a care giving situation.

But on my couch with that new ring, I cried hard. I cried because it was in my parents that we were seeing the sickness and the worse. I hated it. I hated their sadness. I hated that it was happening to them. But I also cried because I felt lucky. Here was my husband, knowing what we know, saying, “Screw the worst. I’m here to love you forever.” I cried because it was from my parents that we were learning that kind of love.

It’s a heartbreaking lesson. And a beautiful one.

Others do see the sacrifices, strength, endurance, patience, faithfulness and other qualities that caregivers have to draw upon. And, even when we are broken and the thought of having impact seems like a big “wat?” to our wrung out souls, the good that we do can be blessing other lives.

One of the Bible’s pictures of “final judgment” includes the fact that neither the good or the wicked, the caring or the careless, realized what they were putting out into the world. Confronted with the record of their lives, they all alike said, “Wat?”

“Then the righteous will answer him, saying, ‘Lord, when did we see you hungry and feed you, or thirsty and give you drink? And when did we see you a stranger and welcome you, or naked and clothe you? And when did we see you sick or in prison and visit you?’ And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.’

“Then he will say to those on his left, ‘Depart from me, you cursed, into the eternal fire prepared for the devil and his angels. For I was hungry and you gave me no food, I was thirsty and you gave me no drink, I was a stranger and you did not welcome me, naked and you did not clothe me, sick and in prison and you did not visit me.’ Then they also will answer, saying, ‘Lord, when did we see you hungry or thirsty or a stranger or naked or sick or in prison, and did not minister to you?’ Then he will answer them, saying, ‘Truly, I say to you, as you did not do it to one of the least of these, you did not do it to me.’ And these will go away into eternal punishment, but the righteous into eternal life.” (Matthew 25:37-46 ESV)

It is one of our contentions here that care giving is holy work. In more specific language of our faith, it is “Christlike.” It isn’t about feeling good or being free of doubts and even days of despair. Rather it is sacrifice (often ugly in the moment) that busts the goodness of God into a hurting world.

We believe that there are blessings to come, even if our first response to them is likely to be, “Wat?”

When anniversaries aren’t happy

Ours was and is. We went out to a great dinner with friends while another friend watched Joey. A week later, we are off to see The Eagles in concert as a mutual silver anniversary gift.

But “Happy Anniversary” can ring hollow for many caregivers. A woman caring for her infirm spouse wrote,

47 years of marriage. Not even a Happy anniversary. I should be used to this, but I’m not.

We need another, non-Hallmark greeting for such days.

We need to drop the “happy” and use words like “honorable.” “Honorable Anniversary.” Because it isn’t a joyful day, but it is a noble one.

It isn’t about the fun romantic love, because that’s been trashed. The memories, if there at all, hurt too much as reminders of what’s lost.

But these dates still mark a commitment and a self-offering. They represent a profound kind of love that is offered when the warm fuzzies are long gone.

We should honor those who continue on in circumstances from which many would have run away. Honorable Anniversary if you are one of those.