Grieve

August 26, 2008

Tom Graboys, M.D.
taught at Harvard.
He was regarded as
a leading cardiologist
not just in Boston
but in the U.S.
Then at the height of his illustrious career
he developed Parkinson’s Disease
and Lewy body dementia.
He continued his practice for a short while,
but then he had to relinquish this work
that meant the world to him.
In his memoir, Life in the Balance,
he recounts the many changes he’s now making.
He writes not just about himself
but about his caregiving wife too:
“In the summer of 2006, unbeknownst to me until recently, Vicki called my office just to hear the message on my voice-mail, a message I recorded long before the slowness descended, just to hear the voice of the old Tom. She grieves, as I do, the person I used to be.”

A person with a progressive disease
will grieve their associated losses
as the incapacitation runs its course.
This also holds true for anyone close to them,
including any caregiving family member.
The person who’s suffering the debilitation
can no longer do what they once did
or be as they once were,
and that’s sad.
Similarly, the life the two have shared
can no longer be the same either.
In such a situation
grief is a very natural response.
This is as true for the caregiver
as for their care partner.
Any grief, of course, can be painful.
This particular sort of grief
can be unexpectedly sad.
But it’s important to remember
that such grieving is not bad for you.
It’s not wrong.
It’s certainly not unhealthy.
It’s not at all unloving.
Indeed, it is because we caregivers
love as much as we do
that we may grieve as much as we do.
Our love and our grief are interconnected.

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Minuet

August 21, 2008

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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End

August 18, 2008

We know clearly
when caregiving starts.
We know how it feels
as it begins.
But what about
when it ends?
What happens then?
Our family has been caring for Dad
in various ways for several years.
At first we “looked in on him”
at his home on the lake.
Later we provided more direct care—
bathing and dressing him,
monitoring his medications,
negotiating his wheelchair,
handling all his finances.
On July 4 we took him from the nursing home
for a picnic at his beloved lake.
What a lovely day!
Until he fell, that is, breaking his leg.
He had surgery the next day.
That night he suffered a heart attack.
Eight days later he died.

It’s been five weeks now.
Not only do I miss him,
but I miss the caregiving.
I miss the natural contact it provided.
I miss holding him as he shuffled along.
I miss shaving him as he sat quietly.
I miss conversing with him
as I clipped his nails.

Our caregiving always comes to an end.
Maybe we want that to happen—
the demands seem too much for us.
Maybe we don’t want it to end—
we’re happy as things are.
Maybe we’re of both minds.
But our caregiving will end,
somehow, sometime,
one way or another.
Whether we dread that,
or hope for it,
we dare not forget its truth.

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Voice

May 6, 2008

Dad moved into
skilled care Friday.
This may be temporary,
but probably it’s not.
He’s getting continually weaker.
His moments of real clarity
occur less frequently.
My sister Patty came from Colorado to see Dad,
not knowing she would be spending her time
overseeing this transition.
The doctor had ordered a diagnostic procedure
during Dad’s hospitalization,
but Dad’s blood was too thin at the time.
The procedure is painful and a little risky,
especially for an 88-year-old.
Dad was to be brought back in this week,
so the procedure could be done as an outpatient.
At one point Patty asked the physician,
“If he were your father,
would you proceed with this test?”
The doctor paused, then said, “Probably not.”
“Then please remove his name from the schedule,”
Patty said. “He’ll go without it.”
When aides were not putting up guard rails
on Dad’s bed, Patty said,
“It’s important to raise those rails each time,
otherwise he’ll fall again.”
These are only two of many examples
of how Patty has spoken up for Dad this week.
As his energy has waned and his voice has weakened,
she has stood tall beside him
and said what he was unable to say
or did not know how to say.

Being the voice for the one in our care
can be one of our most important tasks.
When doctors move and talk rapidly, we can say,
“Please repeat that more slowly
so we both can understand you.”
When complex medical procedures are proposed,
we can ask about risks and benefits, saying,
“After we talk this over in private,
I’ll tell you what my care receiver wants.”
When the one in our care is ill-equipped
to speak their concerns or state their case,
we can be their sound voice for them,
speaking their truth with authority.
If we don’t do that, then who will?
If we don’t serve as their advocates,
who else will step forward?

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Journey

May 2, 2008

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

April 28, 2008

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

April 25, 2008

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

April 22, 2008

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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