Guys and grief

…make room for the possibility that your strongest emotion is grief.  Those of us of the male persuasion perceive grief as a weakness…

Our son likes to watch rapid images.  Movie trailers or Disney music videos on You Tube really keep his attention.  I was “playing requests,” loading up movie and song clips as he asked for them.  Then the computer froze.

Autistic people can get violent when frustrated.  Our son didn’t have words to express his displeasure and my repetition of “Ready to be calm?” couldn’t reach him.  He grabbed up a braided rope dog toy and started whipping me with it.

I tried to stop him verbally, but the strikes hurt and all of a sudden I was ready to strike back.  I spun the desk chair around and shot to my feet.  There he was, maybe a third my size at the time, his face contorted in rage.  He just held the rope whip up, not sure what to swing at now that my full frame loomed over him.  I had both fists clenched.

Then I ran out of the room and dissolved in tears.  I didn’t want to hurt him, but I was hurting deep down.  My own child was so messed up that he was beating on me.  He was upset because one little thing that brought pleasure to his confusing life wasn’t working.  Everything looked like pain and impossibility from every angle.  It broke my heart.

You might blow up emotionally from time to time.  The one for whom you care might seem like a total waste of time, space, money, effort, hope and love.

When that happens,

make room for the possibility that your strongest emotion is grief.  Those of us of the male persuasion perceive grief as a weakness.

We often put on anger or physical aggression as the most available masks, because some part of our agitated brain perceives those reactions as strong and effective.

You might feel like you need to raise your volume and smash something, when what you probably need is some privacy and a big box of Kleenex.

Creative ways to give care givers a break

Even care givers have cool jargon.  One of our words is “respite.”  We need some time off from 24/7 care giving.

Community programs that provide activities for those in our care help us as much as them – sometimes more.

Our local paper had good coverage of a creative regional program.  This one specializes in outdoor adventure for critically ill kids and injured military veterans – which means respite for their care givers as well.

One church we attended hosted a weekday program for people with Alzheimer’s.  There were activities and lunch for them at the church, but the main goal was to take over their care for the better part of a day so their care givers could have some free time.

Friends and neighbors can make a big difference in the well being of care giving families with creative ideas that allow respite.

On the other hand…

Yesterday’s post was a tribute to professional and community service people who share the care giving work and make our lives so much better.

Sadly, there are plenty of care givers with horror stories of insensitive, unresponsive or just plain mean folks who add difficulty to the day’s challenges.

A Nebraska family, care givers to a deaf child, is dealing with an unhelpful school district:

Hunter Spanjer says his name with a certain special hand gesture, but at just three and a half years old, he may have to change it.

“He’s deaf, and his name sign, they say, is a violation of their weapons policy,” explained Hunter’s father, Brian Spanjer.

Grand Island’s “Weapons in Schools” Board Policy 8470 forbids “any instrument…that looks like a weapon,” But a three year-old’s hands?

“Anybody that I have talked to thinks this is absolutely ridiculous. This is not threatening in any way,” said Hunter’s grandmother Janet Logue.

Words fail us.  But this brought to mind one of Jesus’ harsh criticisms of earthly authorities: “For you load people with burdens hard to bear, and you yourselves do not touch the burdens with one of your fingers.” (Luke 11:46 ESV)

UPDATE:  The school system backed off on this, according to a follow up link at the article.  That’s a relief.  But feel free to vent your horror stories on this thread if it is helpful.

When a Care Giver is Priceless!

A friend of ours received a letter from someone who had been an aide in their child’s class throughout high school.  In response to a thank-you card sent from the family, the aide wrote:

“I just wanted to let you know I received the card and to see how Alex [not the student’s actual name] was doing.

“My past years at Alex’s school have been the best ‘working’ years of my life.  I now understand when someone talks about a ‘calling’ they have and the need to pursue that calling.

“Working with students has brought such meaning to my life and a tremendous appreciation that I am able to share in their daily discoveries.

“It can come as no surprise to you that I have developed a deep affection for Alex, who was truly a joy to work with and made every school day a truly ‘special’ day.  I enjoyed every day I spent with Alex… The ability to transition to an adult program is a testament to Alex… a remarkable young person that I am truly blessed to have had the opportunity to have in my life.  Alex made tremendous strides at school… participating in classes, interacting with the other students and staff and achieving some independence.  I enjoyed Alex’s sense of humor… such a tease when the mood would strike, but would always end with ‘I just kidding, I just kidding.’

“I hope… the new program is a wonderful experience… I would love to keep in contact.  My phone number is… My address is…

“I hope all is well with you and the family… if you were ever to need anything from me – feel free to call.   I miss and think about Alex every day – please let Alex know for me!  I promise to keep in touch.

“Take care,

“I will never forget Alex.”

Have you been blessed with a care giver, at home or at school, who has been such a gift?

Cared for by those in our care

In his college days, Tim attended a big downtown church.  This was back in carefree days before he ever had a thought about “care giving.”  But he noticed that every Sunday, a dented, rust spotted van brought a group of “different” people to the church.  They were residents of a special needs group home.

At a high point of the service, the whole congregation would gather around a raised central platform and altar, and sing the ancient hymn “Holy, Holy, Holy.”  Most of the people would let the choir carry it, even though all were supposed to be singing out to God.  Most heads were bowed down into hymnals or leaflets, trying to get the notes right and playing it safe by doing a kind of musical mumble.

Except for the special needs bunch from the beat up van. They would look up and bellow, all way off key and each in a personal melody that had zero to do with the sheet music.    And Sunday after glorious Sunday, they taught Tim to get over his twitchy churchy nervous inhibition and really open his heart in worship.  They were doing it right, and by just being themselves they took care of Tim’s soul.

Decades later, our autistic son, Joey, is amused by grumpy male voices.  Disney villains crack him up.  He likes Mr. MacGregor in the BBC version of Peter Rabbit.  And he laughs at Tim, stumbling around pre-coffee and growling “Bad dog” when Lily, our Lab, gets underfoot.  (Not sure if the movie characters remind him of Tim or if Tim reminds him of the characters.)

Our son’s chuckling is a constant reminder that stuff that seems urgent and agitating can be shrunk down to just goofy.   His laughter cares for us, even at times when he’s the one raising our blood pressure.

How about you?  Do the ones in your care teach you stuff?  Do they bring out qualities you didn’t know you had?  In what ways do they take care of you?

Perseverence: when the patient must care for self or others

It is the mid-60’s.  A child has a lactose intolerance.  The parents require him to drink 3 glasses of milk per day because most doctors highly recommend it.  The parents do what they think is right.  However, the child is constantly ill and the doctor gives no reason for the constant congestion, earaches, heartburn, nausea and lethargy.  The doctors and parents label him as pretending to be sick so that they can get out of chores, school, etc.

As we noted in the last post, patients often try to support the family who is trying to be supportive of them.  Sometimes the patients are the only ones who understand their conditions well enough to advocate for the right kind of care.

But sometimes their doctor or even their family say:

“Nothing is wrong with you.”

Somebody feels “flu-ish” for months.  She knows that her body is telling her something is wrong.  She is miserable and has trouble focusing at work, so she “fires” her disbelieving doctor.

A new doctor sends her to specialists, one of whom finds a chronic illness which is known to be a serious disability and which requires much patience and care.  So much for hearing her former doctor, just outside the door, telling someone “There’s nothing wrong with her!”

But the patient’s file might now carry the humiliating diagnosis of “hypochondriac.”

Nurses at a hospital don’t give the patient all of the medicines he normally takes. This is because of a lack of paper-trail, as the patient has to be treated by doctors at two different medical facilities.  The patient is uncomfortable and weak but continues to insist on the meds he knows to be correct.  In the end, the nurses never investigate this and the his illness is more painful because of the sudden exclusion of the daily prescription.

Perseverance!  Have you ever had to persevere to care for yourself or a loved-one?  What was the result?

A Family Copes. Or Doesn’t.

Grandma: Your mother killed my son.

10-year-old: What?

Grandma: Dis-ease causes disease.

10 year-old: I don’t understand.

Grandma: Your mother was cruel to your father. She gave him the cancer.

This real-life horror story points to the sad fact that some families fall apart when a member is ill or dying. Families are in constant struggle when a family member is in need of special care. Some families grow closer together and some do not.

The first question we were asked when we went to a pediatric psychiatrist for our son was “How is your marriage?”

  • A wife blames a husband for their child’s illness. They were his genes that the child inherited.
  • A husband or wife falls apart emotionally. The marriage ends.
  • The siblings are lost.  Their brother or sister is ill or dying and now their parents are unapproachable because they are involved in their own personal arguments.

A friend who is being treated for a life-threatening illness told us, “[My family fights and] I must constantly learn to live with it.  I believe that this has destroyed my family.  We were the closest of families ever; no fighting no nothing then my dad left and everyone separated.

“It’s hard for everyone to deal with.  That’s why I always have to be the strongest for myself and my family to keep going…

“But until I’m locked up and trapped [in the hospital], [I will enjoy my free time.]  Tonight I will be at the Red Hot Chili Peppers [concert] with the best woman in the world my mama!!! Thank goodness I have her because shes such a cheerleader for me and the person I can count on for anything.

“Yeah, I’m not sure how our family is working.  Seems like most of the time its everyone hating everyone [else] only to put pressure on me to keep us together .  I’m the only one who talks somewhat to everyone.  It’ll all work itself out though.  I hope one day when I really need everyone they will show up and come together and realize we all need each other still.”

Post-parade report from the outskirts of hell.

It’s Monday night.  Tim here.  I’m going to rant a bit and maybe Melissa will add.  I’m not up to collaborative writing at the moment.

Yesterday we blogged some affirmations about care givers.  Talked about giving ourselves “a parade.”  Our son spent today throwing up and having seizures.  We’ve been cleaning up blood and vomit and doing constant laundry.  Turning our calendars inside out, cancelling a hard to get doctor appointment, trying to get work done by phone and internet and most of all just agonizing as we watch our guy hurt.

We mentioned on Sunday that we are people of faith.  Doesn’t mean that our God doesn’t catch an earful from us from time to time.  I’m on His divine case just now.  A miracle would have been nice and he provided one – he seems to have made our bottle of cleaning solution disappear.  We’ve looked everywhere.  It is the best thing we have to break up the blood stains and clean up the vomit.  And it has evaporated. What a wondrous, amazing act in our hellish day!  Thanks so much.

Watching your kids suffer is the worst.  Another blogger had a dose of that last week.  It takes everything good out of you – joy, energy, wit – it all gets fried.  I’m guessing the residents of hell don’t feel like throwing parades, either.

Don’t miss your own parade

Tim grabbed a book to pass the airplane hours on a recent trip. It was Gangster Squad by Paul Lieberman, a bit of history from our hometown, L.A.

The author relied heavily on the memories of retired LAPD Sergeant Jack O’Mara. Toward the end of the book, Lieberman writes about Jack and his wife, Connie, in their final years,

“When Connie had her stroke he cared for her at home, lifting her in and out of bed and keeping her clean, doing everything, until he got weak, too, with lymphoma. Only then did he allow her to be taken to a nursing home, where he visited every day…

“I had kept in touch through Connie’s illness and death, convinced that his caring for her was his finest act as a man – far beyond anything he did with a gun.”

That’s some tribute. O’Mara was part of a squad that successfully prevented organized crime from gaining a foothold in L.A., yet his biographer saw care giving as Jack’s greatest heroism.

Care givers aren’t often portrayed as heroic. We can seem like newly divorced people, or like the sick or disabled people in our care – others don’t want to get too close, afraid that our struggles might be contagious.

We need to throw our own parade. Not a celebration of arrogance or self-righteousness, just the occasional affirmation that our care giving is a good thing. Heroic, even.


We envision this blog as a place to affirm and encourage (OK, and to whine from time to time). We don’t intend to preach. But it seems worthwhile, for discussion’s sake, to mention that our faith helps us find affirmation when our work doesn’t look or feel heroic: “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” (The Bible, New International Version, Hebrews 6:10).

Where do you find affirmation of your care giving? Who throws your parade?

Composure

We remember the day our son was diagnosed. It was difficult to maintain composure, but Melissa did not want anxiety to become contagious. She did not remember what the doctor said after the diagnosis was rendered, called a friend after an hour, while alone, and cried.

Another family’s doctor would not confirm their diagnosis because the patient was under 3 years old. Frustrated, they finally asked, “OK, then, when you HAVE diagnosed a patient, did they behave like THIS when they were 2?” It took 1/2 hour to that answer but in this instance, care giver composure was the only way to get it. The diagnosis was needed to get services and early-intervention is crucial.

A seizure that causes injury is complicated because our child is combative after a seizure and will not let anyone examine him. Although too wobbly to walk, he will not sit in a wheelchair. There are the times that there is so much blood that we cannot tell where the injury is.

Composure is essential until the problem is under control.

A telephone call from a school or other daytime program gives news that the person you care for has a medical emergency. The caller is very detailed yet composed. Now it is your turn to stay composed and respond.

If you care for someone who has “melt-downs”, composure in public is difficult. You are angry. Your child doesn’t look as if they have disability. People are looking at you as if all you have is a spoiled child, thus, you are a horrible parent. Your shopping cart is full. You simply leave. For tonight, newspaper will have to replace toilet paper.

Sometimes, patients are so ill that they are rude to their care givers. The caregiver is exhausted and becomes frustrated. The person you care for seems like an enemy.

When have you had to maintain your composure?