Buckets

“Buckets?” he asked.  “Yeah, buckets,”  I answered.

I haven’t cried like that in so long that I didn’t know until then that my right eye doesn’t produce tears.  It is difficult to say much about this movie, called Ocean Heaven, except that my friend was spot-on, I cried buckets.

How do you recommend a movie, made in China, starring Jet Li, the martial arts movie star, subtitles and all, with more enthusiasm than some have shown for Gone With the Wind or Titanic?  Easily, and in my case, more so.

I cannot think of a movie that has moved me more than this.  It was better the second time, when I watched it with my husband, even though I knew how it would end.

All I can add is that this movie looks at the perspectives of both the autistic person and the struggles of the caregiver with compassion that I have never seen in any movie or documentary.

Goldilocks Syndrome

Some cute bears just because bears are in the story.  Irrelevant, really.

Some cute bears just because bears are in the story. Irrelevant, really.

I’m assuming that you all know the story of Goldilocks and the three bears. If not go read it here before it gets banned or something.

Anyway, the key is that the little home invader keeps trying stuff out in the bears’ house – food, furniture, whatever – and goes through a “too much, too little, just right” dialectic each time.

Coming to the help of caregivers is similar. You can come on too strong and amp up our anxiety, or you can stand back and make us angry because you just don’t seem to care. Finding “just right” is not easy.

We wish there were a magic something something that would make our situation all better. So why wouldn’t you be tempted to come on too strong and try to fix our world from top to bottom?

At the same time, our situations overwhelm us and we want to escape. So why would you want to wade in at all?

Caregivers (especially the lame kind that blog) complain about this stuff all the time. “I can’t believe the way grandma walked in here like everything I do is wrong and she’s gonna fix our kid.” Or, “I’ve been going to that church for twenty years, and not a single person’s offered to help me with this mess.”

A care giver in another city had a bunch of church people show up at her house without warning, packing all kinds of cleaning supplies. And clean up they did – not just the house but what little remains of calm and sanity she had that day. It was embarrassing for her and stressful for her family. Other help might have been welcome, but the church folk did what they thought was important rather than ask what the family might need.

The flip side (anybody know what a flip side is anymore?) is in this Facebook comment from another care giving friend,

All we got from our parish was ignored.

Our church recently tried something that we hope will be “just right.” We identified people we knew to be family caregivers. There were lots when we pulled out the parish list and gave it some attention. Some of it is the normal course of aging and one spouse needing to do more for the other. Other families have a loved one with chronic or terminal illness. There are grandparents caring for grandkids, and kids caring for parents. And there are the special needs families like our own.

We sent a personal note to each, expressing our respect for their efforts. We included a care giver resource sheet from a local community center, and this Bible verse,

God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them. (Hebrews 6:10, New International Version)

IMG_20150703_115452_701Before the letters went out, they were placed on our church altar and the care givers and those in their care were prayed for by name.

Our hope is that these letters will land in the “just right” place. For those who value privacy and self-sufficiency, we hope to communicate a bit of recognition and encouragement. For those who might want more, we hope the letter is an invitation to ask for help on their terms.

To take it down a few notches and give some workaday examples, it is like dealing with customers in retail. You can put them off by hard sell, and you can put them off by ignoring them. Same with visitors to a church – they don’t want to be pounced upon and they don’t want to stand in a corner while everybody else gabs and swills all the coffee after the service.

If you know a care giver, try to find a “just right” overture. Don’t try to barge in and fix everything, but don’t stand aloof.

And if you are a care giver, don’t make others guess. They are just as intimidated by your situation as you are, but you’ll find they can be very loving and helpful if you’ll give them a bit of guidance.

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?


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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?”

Love vs. Cooties (a thought for Lent)

There are all kinds of care givers. We are parents of a child living with autism. There are adult kids caring for a parent with Alzheimer’s, spouses caring for sick or disabled partners, and all kinds of other arrangements where folks are living a typical life one day and thrust into the world of medicine, therapy, advocacy, domestic labor and who-knows-what the next.

One of the frequent complaints I hear from care givers is the way that family and friends start to draw back from the situation. Some folks feel completely abandoned in their efforts to take care of a loved one. A few quotes from other care givers:

I have found that we have become more and more isolated as time goes on.

Maybe it’s too much to ask for somebody to just be there to listen or hold your hand or just exist in the same space…

I guess my question is why You’ve taken every single earthly, tangible aspect of faith from us? Church. Sacraments. Spiritual support. Friends. Family. You’ve given us both loneliness.

There used to be a similar complaint from divorced people, although the culture has changed so much I’m not sure if its’ still a reality. But over the years, I heard divorced people lament how friends, especially other married couples, floated away from them.

I think that we all share a human tendency to turn away from situations that scare us. There’s a primitive fear that another person’s dilemma is contagious, like cooties. Maybe the roots are some evolutionary impulse to separate from that which could introduce a defect into our gene pool. Maybe they are spiritual – we don’t want to stand too close to someone who seems to be suffering the wrath of the gods.

Whatever the source, a Bible passage I heard on Ash Wednesday reminded me that the real God wants us to overcome the fear and to love those is distress as though we are part of one another:

“Is not this the fast that I choose:
to loose the bonds of wickedness,
to undo the straps of the yoke,
to let the oppressed go free,
and to break every yoke?
Is it not to share your bread with the hungry
and bring the homeless poor into your house;
when you see the naked, to cover him,
and not to hide yourself from your own flesh?

(Isaiah 58:6-7 ESV)

That’s a tall order, to see someone else’s distress as a hurt to “my own flesh.” The passage puts it in the context of “fasting.” It is to starve my selfishness and fear of “cootification” in order to reach out and make another’s burden lighter in any way for which I am equipped. As that one care giver lamented in the quotes above, sometimes that’s as little as to “just be there to listen or hold your hand or just exist in the same space.”

That Ash Wednesday lesson went on to say that God blesses such love,

Then shall your light break forth like the dawn,
and your healing shall spring up speedily;
your righteousness shall go before you;
the glory of the LORD shall be your rear guard.
Then you shall call, and the LORD will answer;
you shall cry, and he will say, ‘Here I am.’

(Isaiah 58:8-9 ESV)

I pray that God’s Spirit will cleanse fear from hearts and bring loving people alongside isolated care givers.

Joey and the death of Robin Williams

The breaking TV news about the suicide of Robin Williams stopped Melissa and me in mid-conversation. It just shut us up and made us sad. At least one newscaster looked like she’d been in tears.

Over dinner as a family, as Joey downed two big Jimmy John’s tuna subs, we realized that we would not have to explain this to him. I thought I should say something (boy, how many disasters start that way), but thank God I refrained.

Joey loves Mrs. Doubtfire and Disney’s Aladdin, and he knows that Robin Williams is the star of those flicks, because the previews say so and Joey repeats what they say as Gospel truth.

One of the strange blessings of his autism is that Joey will not be part of generalized human sorrow. As long as he has TV, video, DVD, YouTube or whatever technology comes along, he’ll have Robin Williams. He has no reference points to comprehend “That face you see and voice you hear isn’t with us anymore.”

Cold, clinical explanations are clear that autistic people tend to lack empathy. So, Joey won’t be moved to grief (or, for that matter, anger or any other strong feeling) by the news of the day.

In some ways, that can be reinterpreted as a blessing. He won’t live in fear of Ebola or whatever the news says he should fear. He won’t be whipped into a frenzy against any particular group of people.

I’m rambling, I know. No deep conclusions in this – just some observations. And I’m glad I shut up and just observed and didn’t fill the dinner conversation with useless words. And I’m glad that Joey isn’t twisted this way and that by all of the stuff that twists the rest of us.

Out-kicking your coverage

Sure, I felt like bringing in a football term in this long, bleak, no-football season.

Of course the joke is on me because “out-kicking your coverage” now means “dating someone waaay too good looking for your mediocre self.” But I’m going to stick with the old football usage for this post.

A178744_000A_1Out-kicking your coverage is about your strength working against you. It is when a place kicker or punter blasts the ball so far that the receiving team has time to field it and set up strong blocking before the kicker’s team can get there to make a tackle. It can result in the other team taking your big ol’ kick back a long way in your direction, maybe even into your end zone for six. (Yeah, I know, I know, I’m desperate for football).

But here comes the care giving part. I gave a sweet lady a ride home from church on Sunday. She’s in her high 90s. Other than some absent mindedness she’s still sharp, with a great wit that lets her goof on people. She’s always well groomed. And, unless she’s going for a very long stroll, she doesn’t bother with her walker… she just goes with her almost-100-year-old legs.

But she lamented how she’s outlived everybody close. Husband, siblings, close friends. She lives in an adult community that has skilled nurses, so she has professional care givers 24/7. But not the folks who’ve shared her decades of life, who have personal, precious memories to laugh about with her, who could live right there in her apartment with her as part of her. None of those care givers remain.

It’s a strange thing to think on. You can be so strong that you “out-kick your coverage.” Like a punter who put in too much leg, you’re suddenly facing the oncoming stuff all alone.

Worries me a bit, I have to say. I’m one of those people who Melissa describes as “hardy.” My health tends to be pretty good, and I don’t have any of the super bad habits that would change that. Heck, I had the obligatory GI scope, and they told me not to bother coming back for another 10 years.

Now that should be awesome news. But after that little Sunday drive, it has me thinking.

Valentine’s Day Buzzkill

Valentine’s Day should be super-romantic for us.  It’s the two day running start to the anniversary of our engagement, February 16th.   (The engagement is a great story, but has nothing to do with care giving so you miss out on this blog.)

So you would think that we would spend the better part of a week on flowers, champagne, oysters and lust.  And we could.  We’re aging, not expired.

Except…

We have in our house a just-about-to-turn-19-year-old autistic kid.  If he needs us, he simply jars open the door and walks into our room.  Any time.2012-12-22_09-13-56_966

Sometimes, it is to push the “on” button on our TV because he likes the glow it casts in the hallway when he’s in bed.

Sometimes, it’s because he got up to play on the computer and it isn’t doing what he wants.

Sometimes, he wants to carry on a conversation about a movie company logo he saw in a video preview.

Sometimes, he can’t get the bottle of juice open for a midnight drink.  (He expects us to cover just about any fine motor action.)

Sometimes, it’s “clean up on aisle 5” conditions with which I won’t sicken you right now.

He can come busting in any ol’ time, and we’ve become masters at positioning sheets and blankets, and keeping bits of fast-on clothing within reach.

It’s another of those things, like helping him with his bath, that should have been a few months of inconvenience when he was a toddler.  But here it is, still with us after almost two decades.

And we should count ourselves among the lucky.  There are plenty of couples in which a healthy spouse is taking care of a seriously ill spouse, and romance isn’t even on the menu.  Here’s one wife describing the last months of caring for her husband:

“Michael’s illness was just plain hard. I’m not complaining; it could have been a thousand times worse and I know that. Yet from the day he got sick in late November until he died on April 5, he never again had even one good day. His life became throwing up in a bucket or trying to sit perfectly still so he wouldn’t throw up. My life became driving him to medical appointments in the dead of winter through rain and sleet and snow and fog and sometimes all of the above. I’ll condense the story for your reading enjoyment. Michael got worse. Life got harder. Then he died.”

 

Can’t imagine their February 14th that year.  So I guess I should cease my whining here and just keep my shirt on.  Literally.

 

Care giving and the horror in Connecticut

I’m sitting here sick, almost to the point of nausea, about the school massacre in Connecticut.

Teachers and school staff. Children. Families. A young man with a “personality disorder.” Care givers and those in their care. Dead. Or dying inside because those they love and care for are gone.

Both social and mass media are full of opinions. Loud, political pronouncements about how SOMETHING MUST BE DONE.

I won’t jump on those here because that’s not what our blog is about. But I will throw in one thing to consider:

The killer, the one with the known “personality disorder,” appears to have lived at home with his mother. As we’ve commented before on this blog, there comes a point where family members, however loving, skillful and motivated, are not up to the needs of those in our care.

Amidst all of the political hot air blowing, perhaps we need to bring up the less sexy subject of funding for institutional placement and care for those who are not criminals but cannot function safely in society. To stop looking down our collective nose at families, expecting them to go 24/7/365 as if they are clinical settings, because “it’s their problem.”

That’s all I’ve got this weekend. Words really fail. Melissa and I pray, but in all humility finding the right words is hard so I’m not going to say any platitudes about that. There are times when even prayer is cloudy and drizzly,

Psalm 88

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?

(Book of Common Prayer, 1979)

Togetherness or Privacy? Care giving at the end of life.

My dad was in the hospital for the last week of his life.  There was a family member at his side every minute – except on the last day, when he died during a 15-minute gap between visitors.

I don’t  write that with regret.  I think that my dad represents a number of people I’ve known over the years who, for whatever reason, needed a bit of privacy to die.

We had a friend who was physically incapacitated for his last three years of life.  His wife was an amazing woman who maintained a gentle, joyful disposition while maintaining him at home as his 24/7 care giver.  Her affection for him was radiant.

She decided to take a short respite break, not out of desperation but just to catch up with some out of town relatives.  She found a local program that let her husband spend a few days in a skilled nursing facility so she could go.  While she was gone, he died.

I was able to get over to the facility before his body was removed.  His face, contorted with strain while he lived, was relaxed, youngish and serene in the privacy of his passing.

On the other hand, there are many people who need companions as they cross over.  We’ve all heard of people who were on the edge of death but hung in there for days until the last relative was able to fly in from Lapland to say goodbye.

My dad’s mother was one of those.  He grew up on a subsistence farm in the Ozark Mountains.  His mother died when he was 11.  He recounted how my grandmother, without the benefit of modern hospital care and life support, lived long enough to have every member of the family get to her bedside, where she spoke words of faith and encouragement to them.

I knew a beautiful wife and mother, killed in her 40s by an aggressive cancer.  She was emphatic about spending her last days at home, with her husband, teenage son, a view of the ocean and a small, scruffy dog that I used to tease as “wimpy.”

She died watching a beautiful Pacific day, with those she loved at her side.  When the team came to remove her body, the little dog I’d mocked as wimpy proved to have a lion’s heart.  He planted himself by the couch where she lay and barked and growled, feinted and lunged, forbidding them to take her.  It took her husband ten minutes to convince the dog it was OK to stand down from loyal duty.  The woman did not die alone.  She had all that she needed for her final journey – a loving send off and a formidable escort.

Sometimes those in our care will be able to tell us if they want us there as they die, or if they prefer privacy.  We can do only our best to honor those wishes, since none of us control the details and timing in any but the most extreme life support cases.  The important thing is to hear those in our care and honor their wishes to the extent that we can, even if that means denying ourselves some of what we might want out of the situation.

We might stay close, in great misery, because they want us there.  Or we might long to be by their side but not get there “in time” as they pass away privately.   Stinks for us, but it works for them.  And I think that gives us room to be gentle with ourselves, not assuming guilt over the workings of a profound mystery in which we are more audience than actors.