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)

 

Worth reading, discussing and doing

Forbes Magazine has a #LifeHacks piece called 4 Critical Things To Do Before Becoming A Caregiver.  It is concise – almost a simple checklist of ways to prepare “General, Legal, Medical and Financial” documents and plans before becoming a care giver to a family member.

Ideally, discussion and preparation should go on while the family is in good health.  Spouses should talk about plans as they age; extended families should talk things out with parents, grandparents or other aging loved ones.  Families like ours, engaged in long term care of a special needs child, need to get ahead of these matters as well.

Unfortunately, care giving falls into many lives without time to prepare, as the result of a catastrophic illness or accident.  This article will still serve as a valuable resource, even under difficult “catch up” conditions.

While the article does mention getting “Names and phone numbers of religious organization and points of contact,” we would amplify this to include discussion and documentation of funeral/burial wishes, whether religious or not.  Don’t underestimate the wear and tear on care givers and other survivors;

  • the unexpected cost of a funeral, often setting up stress between unexpected price and available budget, leading to guilt and family squabbling;
  • the bombardment of questions – “What music at the service?  Burial or cremation? Who is going to speak?” – that comes in right when survivors just want to be still, remember and grieve;
  • the challenge of providing an event for a large number of people, many of them strangers to the survivors, on short notice;
  • oh, so much more.

It is a great gift to the family to have talked out and written down the loved one’s wishes in advance.  Most funeral homes and many churches have worksheets that ask all of the relevant questions, and having these available at the time of death takes a great deal of strain off of those dealing with loss.

…when such a thing happens…

Everyone reading this book – indeed, every human being – needs to know that when such a thing happens, we are not alone.  Victor Lee Austin, Losing Susan, Brazos Press 2016.

If you are a family care giver, or if you know one, Victor’s book (and it really turns out to be his late wife Susan’s book just as much) can be at once a splash of cold water that wakes you up and a strong arm around you for comfort.

20170206_141154He tells the story of his wife’s long terminal illness and his efforts to care for her with great love and humility in a pure sense of that word, by simply being objective and not forcing any judgments.  Some questions are left hanging, and this book gets across how normal and necessary that is.  No tidy answers to the big questions, but great insight into family care giving and a gift of compassionate companionship for those who are caregivers.

Just as many combat veterans need others who’ve been in battle to process what’s happened in their lives, care givers will find in Victor and Losing Susan a level of understanding and acceptance that helps process uncomfortable emotions and experiences.

Reading this is a reminder that care giving thrusts orderly souls like Victor’s into chaos, free spirits into stifling routines, thoughtful people into impulsive action, rational people into irrational situations, spontaneous people into detailed planning, extroverts into isolation and introverts into a land of disintegrating boundaries.  And what’s worse is that this all involves the loss of the person most a part of us and most able to buffer us in life’s hardships.

As I read this book, I was struck by how much I would like to see couples read it while preparing for marriage.  God forbid that they should have to walk the same course as Victor and Susan, but they will walk some part of it.  This book, by telling a family story rather than framing a lecture, brings out the deep reality of

In the Name of God, I take you to be my wife (to be my husband), to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, until we are parted by death. This is my solemn vow.  (Book of Common Prayer, 1979)

That kind of promise will take us into situations for which we are radically unprepared and, in all honesty, incompetent.  As Victor describes so well,

I never had any confidence about how much I should push or encourage her and how much I should step back and just let her be.

I’ve talked to a lot of people who have to care for others whom they love, and we always recognize this point of commonality.

This common lack is why care giving can’t be pulled off all on one’s own.  We need companions and, if we can recognize it, we need God’s grace.  Losing Susan is a voice for both.

“Could be worse”

That saying is too often dropped on a person when they are in pain.

I mean, how often does it really result in, Wow, you’re so right.  Because you said that, my hurt just went away and I feel all better!

Guys (literally, guys for this illustration), did that gorgeous stranger ever jump into your car because you yelled Hey, baby, you fine! out the window?

Could be worse is like that.  Tends to be counter productive.

I was musing on it last night.  My son with autism went with me to a fund raising dinner for a family who’d lost a young man in a construction accident.

joe-eating-ice-creamHere’s my son eating ice cream at the event.  He didn’t like the volume of the loud band, so we made a contribution, said a few passing hellos, ate and left.

I sat grieving the loss of social normalcy in our family.  We couldn’t visit with friends, ask if so-and-so was there or any other normal stuff because our son needs us close at hand and his needs control much of what we can and can’t do.  I was able to give the deceased’s mom a quick hug but couldn’t really spend time with the mourners.

And of course Could be worse played in my head, louder than the band.

Our son isn’t dead, after all.  We have him to enjoy in so many ways, even with all the crud that autism brings.

But one of the struggles for caregivers is prolonged grief…

Grief for lost dreams, when a child’s disability wipes out traditional expectations;

Grief for lost intimacy when a spouse’s or partner’s illness takes it away;

Grief for loss of golden years when something like Alzheimer’s annihilates connection and shared memories;

Grief for… fill in the blank with one of many living losses caregivers experience.

Sure, could be worse.  But it is real, even when one holds all the relative losses in perspective.

grief-meme

From lessonslearnedinlife.com

We’re all the wilderness together, as the old graveside prayer reminds us…

In the midst of life we are in death

Permanent Markers

After the death of her spouse, the woman who cared for him through his terminal illness wondered if she could still attend her caregiver support group.

Nobody in the group had to think twice – “Of course you can come here.  You’re always one of us.”

My wife and I wonder what life will be like once our son with autism moves into a group home.  I think it safe to say that he’s changed us both in some permanent ways; we’ll always be “care givers” even when not running around cleaning up messes and dealing with emergencies.

thomas-by-carravagio

Caravaggio’s rendering of Jesus’ appearance to Thomas – “And this one’s from washing bedding at 2 a.m.”

The Bible says that when Jesus rose from death, his great victory was not a complete makeover.  He carried the wounds of his execution.

Eight days later, his disciples were inside again, and Thomas was with them. Although the doors were locked, Jesus came and stood among them and said, “Peace be with you.” Then he said to Thomas, “Put your finger here, and see my hands; and put out your hand, and place it in my side. Do not disbelieve, but believe.” (John 20:26-27 ESV)

Care giving leaves marks on our souls, if not our bodies.  Some marks are wounds.  We tense up at certain sounds.  We continue to sleep with one eye open.

But other marks can make us glorious treasures to others.  Empathy.  Hard earned wisdom.  Humor.

We stay in the care giver club, not only to be cared for but to be good companions to those still giving care hands on.

Look on my works

People with autism perseverate.  They can grind you into powder repeating some word or phrase over and over.  I mean, for hours.

For them, it’s connection with the world.  For the world, or at least the caregiver in their little part of it, it is numbing at best and torture at worst.  Just say Soon there will be presents to my wife.  Especially after our son has plopped next to her and put himself on auto play for a few hours.

But then plenty of neurotypical people get pop tunes stuck in their heads.  OK, I do that, too.  Or some fish story we have to share again and again, no matter that our long suffering spouse has been there every time we shared it and is getting nauseous as we launch into it again.  Or a joke we think is the greatest of all time and have to keep telling, forgetting that the folks who are hearing it this time were the ones who heard it last week.

Sometimes something more highbrow gets lodged in my brain.  I hoard those to myself, but then I’m an introvert and I know that if I share my deep thoughts the listeners are likely extroverts who will let me speak a few sentences and then use something I said to shift the conversation to themselves.

OK, back to my top shelf perseverations.  A couple of days ago it was Percy Bysshe Shelley’s poem Ozymandias.  Here’s a recitation by Bryan Cranston, the Breaking Bad guy,

I even found an Islamic scholar upacking this famous Western poem for his students.

OK, OK, back to my thoughts.  Let me perseverate all over you.

I think the line Look on my Works, ye Mighty, and despair! is brilliant.  It is so loaded with irony and makes a gigantic philosophical, even theological point in just eight words.  Read with a mind to the king who commissioned his own statue, it means Ha ha ha, losers.  No matter how great your achievements, mine will make you feel puny.

But read from the narrator’s (and our) point of view, it says, All human accomplishments crumble into dust.  Stay humble.

So what’s that have to do with care giving?

We spend a good deal of time lamenting might-have-beens.  There are works we assumed would be monuments to our lives, but they seem to be pre-crumbled.

We are all too aware of dreams that we had to put on hold and which hung up on us rather than wait for us to get back to them.  Career development, travels for pleasure, even that movie matinee we had planned go away while we are tied up.

Even on our most chipper days, we know that those in our care are not living out our hopes and dreams for their lives, either.  I know some counselors who treat caregivers with the same techniques used for people grieving a death.  A life we anticipated was aborted by some syndrome, illness, genetic code or catastrophic accident.  Someone is there with us, but not the someone with whom we expected to share our lives.

What Ozymandias reminds me is that everything, even the achievements we admire, envy, covet and resent on everybody else’s happy Facebook, Instagram or whatever pages, are part of that colossal Wreck, boundless and bare.  The picture at the top of our blog?  Sure, our yard is ratty and the neighbor’s over the fence is paradise.  But in time The lone and level sands stretch far away for one and the other.

Which is an ass backwards way of saying that you are no less than anybody else as care giving pins you down and hems you in.  No, they won’t build a statue to you.  But the ones who get the statues don’t fare any better when all is said and done,

Man in his pomp yet without understanding is like the beasts that perish.  (Psalm 49:20 ESV)

And what you do as a care giver can be part of what will always be said and will never be “done,”

Love bears all things, believes all things, hopes all things, endures all things. Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. (1 Corinthians 13:7-8 ESV)

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?


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?”