Shannon has pancreatitis.
It was caused
by a genetic defect.
It started 6 years ago
when she was 27.
Always healthy and adventuresome
when she was younger,
her life has now taken an unwanted turn.
First there is the abdominal pain.
It strikes without warning, a couple of times a month,
lasting hours on end.
When it first happened,
she thought she was dying.
Now she knows she won’t die,
but sometimes she says she wishes she could—
the pain is that excruciating.
All she can do is increase her pain medication,
curl up in a ball, and wait it out.
Extreme nausea has become her way of life—
most every morning, most every evening.
Sometimes the nausea strikes unpredictably, embarrassingly,
wherever she is, whatever she’s doing.
Daily she must conserve her energy carefully.
Indeed, she will always have to—
she has been told her condition cannot improve.

Shannon has become a friend of mine.
I watch her carry on day after day
with true grit, with remarkable resilience,
with persistent courage.
Her efforts, every single day,
are nothing less than heroic.

In this space that’s dedicated to the issues
of being a caregiver to family or friends,
Shannon is an important reminder to us.
It’s true that caregiving can be demanding.
It’s true there may be something of the heroic
in how some of us caregivers live out our roles.
But we dare not forget that sometimes, if not often,
the one in our care is engaged in a battle
that is even more heroic.
They may grapple with unceasing pain,
or unnerving fear, or unrelenting depression.
They may be forced to deal with symptoms
that are fatiguing, or alarming, or humiliating.
They may be adjusting to diseases or conditions
that limit not only the quality of their lives
but even the length their lives.
Such individuals are examples of heroism personified.
We dare not forget that.

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A letter from me
is on page two
of Willowgreen’s catalog,
mailed last week.
It includes a photo
of four generations.
This is some of what I wrote:

“The image you see here holds many associations for me. The baby is Grayson James, my grandson and namesake. We waited years for him to arrive. We came close to thinking he would never come to be. My daughter Christen holds Grayson. She’s a hospice chaplain. Last year she co-authored Willowgreen’s small book This Time of Caregiving with me. The older man is my father. He lived with my wife and me for a while. Recently he was in and out of various levels of nursing home care between hospitalizations….
“Caregiving circles around and around in this picture. I cared for Dad extensively in his final years. During the same period I cared excitedly for Grayson in his early years. Christen and I both do professional caregiving among our other duties, while being caring with one another as occasions call for it. Last year I underwent surgery myself and most everyone in our family cared for me as I healed, including Dad.
“I believe our family is as ordinary as anyone’s, which means that caregiving commonly happens on and off through the years. Caregiving occurs between generations and within the same generation. It occurs at expected times and unexpected times, in ways we can plan for and in ways we could never predict. Oh, the experiences we’ve had in our family!”

I believe our family’s truth
is the truth of most families:
caregiving encircles us, endlessly.
While it may appear to start and stop,
from that larger perspective
it loops around and around,
tying us together in rings of love
and comfort and hope
and every feeling imaginable.
Caregiving was there long before us
and it will continue its orbit
long after us.
We are privileged to take our place
in that gigantic, looping, circling universe.
Fortunate are those who can sense that privilege
amidst whatever it is our caregiving
may ask of us.

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Vicki Graboys cares for
her busband, Tom.
He has an aggressive form
of Parkinson’s desease.
Life in the Balance
is the book he wrote
about their story.
He needed to write it promptly
before his dementia made it impossible
to pull his thoughts and memories together.
He included this about his wife,
whom he married just before he was diagnosed:
“I will try, often to excess, to express my gratitude and profess my love, which only makes her burden heavier, for it reinforces the unequal distribution of power in our marriage, power she doesn’t want and wears uncomfortably. I sometimes call her my angel, but she doesn’t want me to hang a halo on her. She feels she can’t—and doesn’t want to have to—live up to such lofty, unrealistic expectations.”

I find this to be a common feeling
among the caregivers with whom I speak.
They don’t see themselves as angels
or as saviors
and they don’t want to be seen
in that way by others.
They’re not do-gooders.
They’re simply loving family members and friends
who have risen to the occasion—
the occasion of doing what they can
to support, guide, and encourage,
to cook for and look after,
to walk with and sit beside,
to hold the other’s well-being
as a sacred trust.
Is what they do laudatory?
Yes, very.
Do they fulfill a role
that is life-giving, perhaps even life-saving?
Absolutely.
But do they wish to be stuck on a pedestal
for what they do?
Not really.
Most caregivers I know
are content with being recognized
from time to time,
and validated,
whatever the source of that validation.
But they’re not prepared
to serve as saints.
They have more important things to do.
Like give good care.

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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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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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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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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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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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