Archive for August, 2008

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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