The Thoughtful Caregiver » Caregiving Lessons

Minuet

James Miller — Thu, 21 Aug 2008 08:51:08 +0000

I spent the day
with good friends.
He has Parkinson’s.
She’s the caregiver.
It’s been a long,
trying journey for both.
He is different than when we met 38 years ago,
when we became colleagues,
as he became my mentor.
Today he’s both here and not quite here,
aware and not entirely aware.
It was hard for me to see.
Yet it was still a meaningful day
and I’m glad I went.
I was so impressed as I watched
the evolving relationship of this couple.
She would say gently, kindly,
“Maybe you’ll enjoy walking with Jim
to lunch rather than driving.
It’s such a beautiful day.”
She knew he couldn’t drive,
that he’d make an effort to do so,
and that he didn’t always remember
that driving is now out of the question.
He nodded, and we enjoyed our walk
in the bright sunshine.
“You can lie back on the couch,”
she said to him after we returned.
“It’s just fine; Jim won’t mind.”
So he sporadically dozed,
feeling free to do so in my presence.
Twice she handed him tissues, quietly,
almost unnoticed, without his asking.
A runny nose is characteristic of the disease.
On the long drive home
a word came into my mind: minuet.
A dance between two, and only two, people.
It’s a slow dance, in 3/4 time.
It’s performed thoughtfully, carefully,
yet it unfolds smoothly, naturally.
It’s an art form,
graceful and flowing in its appearance.

Caregiving is often like a minuet.
Two people dance closely together,
with steps that may appear simple
but can be rather complex.
They move, not with the rest of the world,
but in 3/4 time.
They communicate without always using words.
They glide in tandem, each seeking synchrony
with the other’s rhythm.
It takes real effort, and much practice,
and great sensitivity on the part of each.
The minuet of caregiving also takes this: love.
As I drove home, I felt blessed
to have been in the presence
of this couple I so respect.
Their dance is lovely,
and more than lovely.

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Journey

James Miller — Fri, 02 May 2008 16:45:49 +0000

The call came
at 4 a.m. Tuesday.
“Your father’s on his way
to the hospital
in an ambulance.”
He had fallen again.
I drove to Warsaw where our youngest brother
was already watching over Dad’s care.
Dad was weak and disoriented,
unable to stand, much less walk.
He has improved slightly day by day,
but this morning he’s being transferred
to a skilled care setting.
I find it difficult to have him make this transition,
to make the transition with him.
But this is the next step,
the appropriate step,
the responsible step.
But, oh, it’s sad to watch,
sad to participate in.
His world keeps narrowing,
as he’s no longer able to see well,
or hear well, or think well.
Life still beats within him,
yet he makes it clear that he’s ready
to let life go.

For some of us,
this is where our caregiving inevitably leads.
Despite our best efforts,
the one in our care will not always get better.
All our love and assistance will not reverse
what has been set in motion
within the body and the mind.
As the one in our care surrenders
to that unavoidable journey,
we must surrender alongside them.
As we practice this letting go,
maybe we can find comfort in coming to believe
that this is not just a letting go of,
but a letting go into.
Into a place where memories and dreams
begin to unite in ways they never have.
Into a space that allows for a quiet, gentle preparation
for the completion of this pilgrimage on earth.
Into a territory that has plenty of expanse
for received grace, for gathered meaning,
and for ageless love.
When I began this writing,
I visualized our leading Dad
on that next leg of his journey.
As I conclude this writing,
I see Dad leading all of us
on the journey that we will all take,
that we are all well into already.
He is a wonderful guide.

May you have your wonderful guides too.

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Beauty II

James Miller — Mon, 28 Apr 2008 16:54:23 +0000

My friend Steve and I
had been photographing
in the Smokies
and were headed home.
It was late at night.
Sheets of rain were falling.
A semi traveled ahead of us,
pulling a huge stainless steel tank
designed for hauling some sort of liquid.
“Wow! Look at that!” Steve said, sitting upright.
I didn’t see anything other than slanting rain
and columns of headlights in the darkness.
“Look at those gorgeous light reflections
swirling on the back of that truck!”
Steve said, leaning forward.
I squinted to see what he was seeing.
Sure enough, there it was—
a surrealistic display of dancing light,
taking on ever new and dazzling forms
each time a car passed by.
It was as if we had our own kaleidoscope,
eight feet in diameter, right before us.
Steve was the one who excitedly recognized
that nighttime appearance of beauty.
I had not seen it myself.

Remembering that drive home, I state my belief:
beauty is everywhere around us.
We need not stand on a mountain peak
or linger beside a sunset-lit sea
to witness true presentations of beauty.
Loveliness may show itself in the way
sunlight filters through a nearby window
or radiance filters through a loved one’s eyes.
Beauty may make itself known in
an unexpected flash of color,
an interesting arrangement of shapes,
or a lovely design where you wouldn’t expect
such design to appear.
Life-giving beauty often manifests itself
ever so simply—
one solitary flower,
one dangling wisp of hair,
one luminous look on a face.
Ultimately beauty is a gift we’re given,
wherever we are,
whatever we’re doing.
We need only our eyes to open it.

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Beauty

James Miller — Fri, 25 Apr 2008 12:32:12 +0000

I’ve been reading
recently about beauty.
What is beauty?
How do you know
when you see it
or hear it?
What are its signs?
What is its purpose?
In the midst of my readings
I came across this quotation
from the French writer Blaise Pascal:
In difficult times you should always carry
something of the beautiful in your mind.
My initial response to his advice,
well over three hundred years old,
was mild surprise.
The paying of attention to beauty,
I had tended to think,
was for other sorts of times.
Times of leisure, for example.
Or when we’re feeling particularly creative.
Or when we’ve become inspired.
But Pascal says,
“Be sure to maintain a connection with beauty
when times are tough.”
I believe his words must have arisen
from the truth of his own life.
He was in frail health
most of his adult life,
and often in physical pain.
He lived his last years without much companionship
and in relative poverty.
He died when he was only 38.

For some of us, this may be a time
of great difficulty.
Even if that’s not entirely the case,
we each have those moments that try us,
those days that wear on us.
Those are the times, Pascal says,
to carry something beautiful within,
in our minds, in our hearts.
Such are the times to let beauty shine its light
on our spirits, in our souls.
We’re encouraged to allow
what is lovely to see and hear and touch
to be close enough to us
that we can see it and hear it and touch it.
How close?
As close as our own minds, our own hearts.
The reason is simple.
When we carry something of beauty within,
that beauty will carry us.

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Time

James Miller — Tue, 22 Apr 2008 13:31:08 +0000

Bernie and I were
in Charleston last week,
photographing springtime.
We spent three days
at Middleton Place,
an old plantation.
This is the home of the Middleton Oak,
a huge, lovely old tree, laden with Spanish moss.
It’s been around more than 500 years.
Photographing that particular tree was one purpose
of our journey.
Bernie made several pictures when we arrived.
I chose to wait.
People were standing under its extensive canopy;
I wanted to photograph the tree by itself.
Besides, the position of the sun wasn’t just right.
I would come back late in the day
when the sun was lower in the sky.
That evening I made my way there
only to be met by yellow police tape
fencing in the gigantic tree.
A mammoth limb had crashed to the ground,
creating an unsightly hole in its profile.
That night a second, larger branch broke off,
making the Middleton Oak even more lop-sided.
The next morning tree experts discovered
that many branches are becoming hollow.
It’s unsafe to go near anymore.
There’s nothing to be done.

Why do I write about this tree
in a space dedicated to thoughtful caregivers?
Because of the lesson I learned last week.
I waited to photograph that venerable tree,
sure I had all the time in the world.
But I was wrong—
the time I had was quite limited;
I just didn’t realize it.
So I missed the image
I had traveled 800 miles to make.
I learned that if we keep waiting
for the perfect time to do something,
we stand in real danger
of missing our opportunity.
If we hold back from saying
what we’d like to lovingly or joyfully say,
it may never get said.
Equally sad, it may never get heard.
Even if it seems we have all the time in the world,
we never know how much time
we really have.
So when an opportunity arises,
let us not dally.

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Target

James Miller — Thu, 17 Apr 2008 15:19:25 +0000

Bill never regained
his full physical health
after his stroke.
He lost his job,
his sense of security,
and his independence.
Mostly he lost much of his self-esteem.
All this, of course, was very hard to deal with
and his feelings easily overflowed.
Often they came out as sadness or depression,
and understandably so.
But sometimes his feelings took another form:
anger.
He got angry at his wife, Ann,
very quickly and quite loudly.
He yelled at their children
about the smallest of matters.
Even the family dog didn’t escape his outbursts.
As the pressure within their home built,
Ann sought out a counselor
to help her understand and cope.
What did Ann come to understand?
Bill had lost his former sense of control.
He felt embittered about the unfairness
of what had happened.
He was resentful at those who lived normal lives
and who didn’t appreciate all they had.
He took offense at those who pitied him.
In truth he was mad at the world at large,
at life itself.
Who was within convenient range
when his feelings boiled over?
Not those who no longer came around.
Not the whole world at large.
Just those within easy reach—
the members of his family.
And with whom did he feel safe,
whether he understood it or not,
to ventilate such strong feelings?
Those who had long known him, long loved him,
and would do their best to accept him,
whatever he said or did.

The story of Bill and his family
is a common caregiver story.
Those who are most available to,
and most trusted by, a hurting care receiver
are also the most convenient targets,
and usually the safest.
That awareness may not make the anger
any more agreeable,
but it makes it more clear:
somewhere way down deep
love is at work.

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Away

James Miller — Mon, 31 Mar 2008 17:13:39 +0000

I’ve known Shelley
for twenty-five years.
She is very sweet,
very caring.
She has always been so.
So she surprised me
with her response when I asked her,
“Did you spend time with your father
this past week?”
Her father has emphysema.
He had an especially debilitating ten days—
he was on oxygen constantly, and mostly bedfast.
“No,” Shelley said, “I didn’t.”
I didn’t expect that response from her.
I knew that distance wasn’t an issue—
her parents live quite nearby.
I knew that she has always been good
about making time for them.
My face must have registered my surprise.
“He didn’t want me to see him that way,” she said.
“You know, lying around all day,
hooked up to an oxygen tank,
looking and sounding very weakened.
So I honored his wishes.”

Shelley’s father serves as a reminder
that not everyone who deserves care
wishes to be shown care.
In his case, he didn’t want his daughter
to witness firsthand the sight of him
as a man who was less than robust,
less than able to walk out the door
and play 36 holes of golf.
Some people are embarrassed
about the way they look or sound or act
when they’re ill or incapacitated.
Some don’t want to worry
their family members or friends,
or see the worry of those faces.
Some don’t want “to put other people out”—
they feel they don’t deserve the attention.
Some simply value their privacy
and want to protect their sense of independence,
even if it more or less isolates them.
Whatever the reasons given or not given,
we caregivers are called upon to remember
that our presence is not always wanted,
even if that is what we want.
And then we can show our care
by not showing our care,
at least in person.
That need not stop us from using the telephone,
or sending a note or gift,
or holding them in our thoughts,
or offering the most loving of prayers,
not just once but regularly.
If it is their wish,
we can be at our most caring
by not being there in body.
Mentally, emotionally, spiritually—
that’s a whole other matter, of course.

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Watching Over II

James Miller — Mon, 24 Mar 2008 12:07:18 +0000

I spent Saturday
with Dad.
He had forgotten
I was coming,
tho I had reminded him
ninety minutes before.
He was already in the dining room,
eating with his friend Virgil,
so I joined them.
The talk was of being a foot soldier
in France and Belgium in World War II.
Later Dad and I hung out in his apartment,
doing some random chores.
Mostly we chatted.
I organized the currency in his wallet,
since he now has a difficult time of it
when it comes to counting money.
Late in the afternoon the sun came out,
so we decided to take a short walk
in the 30-degree springtime air.
We Millers call this “getting out a bit
to blow the stink off.”
I zipped up Dad’s winter coat
and helped him with his gloves,
before I donned my insulated jacket.
Then we ambled outside.
Less than a minute into our walk,
he turned to me and asked,
“Are you warm enough in that coat?”
“Yes, Dad, quite warm.”
He nodded.
We took a few more steps
before he stopped again.
“Now, you’re wearing gloves, aren’t you?”
“Yes, Dad, I am. Leather ones, like yours.”
He nodded again.
A few more steps.
“You’re okay without a hat?”
“I’m fine, Dad—I seldom wear one.”
He studied my balding head.
“I just don’t want you to be cold.”

I’m Dad’s 62-year-old little boy.
He still wants to protect me,
tho he can barely protect himself anymore.
He wants to guide me
in that quiet, loving way that is his,
tho he requires guidance himself at every turn.
He’s still watching over me,
while I am learning to watch over him.
I assume it will be that way
for quite a long time.
As in, eternity.

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