Target

May 11, 2017

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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Gone

April 8, 2017

I’m gone for several days, photographing springtime in the Charleston, South Carolina area, looking for some visual themes for future entries here. I’ll return to writing The Thoughtful Caregiver on Thursday, April 17. In the meantime, I wish you thoughtfulness.

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Web

April 3, 2017

Mary and my wife Bernie
are very good friends.
They see one another
regularly.
Mary is very engaged
as a caregiver.
Her husband is in poor health,
with three separate medical conditions,
each very serious.
I spoke with Mary by herself recently
and asked about her caregiving—
what was hard and what wasn’t,
what helped and what didn’t.
She was clear about what helps a lot:
“I don’t like to burden family members
with all that continues to happen
and all that I feel in response.
It helps so much to turn to Bernie
to get things off my chest
when I need to.”
“Bernie finds your time together meaningful,”
I said, knowing that to be true.
“But,” Mary went on, “I don’t think she realizes
how much good it does when she listens
and lets me talk all I want.
It always helps me.
It also helps my children
because then they don’t have to hear
the same things over and over,
things that no one can change.
And it helps my husband
because after ventilating my feelings to Bernie,
I return to my role with more energy
and more acceptance.
When Bernie helps me,
she is helping many others too,
even if she doesn’t always know it.”

That’s a magic of thoughtful caregiving:
one act of care often splits off
in several different directions,
whether that’s intended or unintended,
touching the lives of unseen others.
It becomes less a direct line of care
and more an expanding web of care,
branching out every chance it gets.
Rather lovely, isn’t it?

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Away

March 31, 2008

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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Complex

March 27, 2008

Marty is a family friend.
She’s been a caregiver
for her husband Lou
since he had a stroke.
That was 20 years ago.
We spoke this week
about what those years have been like.
The heart bypass surgery.
The progressive waning of his energy.
The diminished family income.
The decreasing social contacts.
Now the awareness he could die anytime.
In the act of hearing her story,
one detail building upon another,
I came to realize how all-encompassing
her caregiving journey has been.
I felt admiration for her strength and stamina,
for how she has carried on so long
without drawing attention to all she does,
all the changes she’s had to make.
Marty paused in the telling of her story,
looked away, and then looked back.
“Right now I worry more about Amy
than I do Lou.”
Amy?
Amy is her daughter, age 39 and single;
the two are best friends.
Amy has not been feeling well.
“It appears she may have lupus.”
Lupus: a disease both progressive and irreversible.
Marty shook her head,
wiping the tears from her eyes.
Feeling the weight of her fears,
and the complexity of all her caregiving,
I shook my head too.

Marty’s quiet voice forcefully reminded me
of an important truth:
Family caregiving is seldom a simple, single story.
Wives give care to husbands,
and husbands to wives,
while simultaneously having to care for
one or more children with needs no less great.
Adult children care for aging parents,
as many as three or four,
sometimes in different, even distant, settings,
each parent requiring unique, changing support.
Grandparents care for a loved one their own age,
while bearing responsibility for family members
one or two generations below them.
These multiple, intergenerational relationships
often go unnoticed by those
on the outside, by the world at large.
But make no doubt:
simple caregiving can be quite complex.

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Watching Over II

March 24, 2008

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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Watching Over

March 20, 2008

My daughter Christen
is a hospice chaplain.
Recently she told me
about a patient of hers.
(I’ve changed the name
to assure confidentiality.)
Though Amanda is in her twenties,
she has the mind of a six-year-old.
She is dying, and she knows it.
Christen paid her regular visit last week.
She looked slowly through the scrapbook
Amanda has been making about her life.
They talked of the many memories
all the photographs held.
Amanda was not feeling well that day,
so Christen drew the blinds,
pulled a quilt over Amanda’s feet,
and began to sing to her quietly.
“He’s Got the Whole World in His Hands.”
“Jesus Loves the Little Children.”
“This Little Light of Mine.”
After the last song, Amanda raised up,
grabbed a notebook and said with insistence,
“Chaplain, we need to make a list.”
Amanda cannot write,
so she dictated her list to Christen.
“Put at the top,
‘Things Amanda Wants When She’s Too Sick to Talk.'”
Christen wrote.
“Number one.
I want you to talk to my mom.
She’s going to be really sad.”
Christen took it down, word for word.
“Number two.
I want you to sing that light song.”
That was the end of Amanda’s list.
Amanda inspected Christen’s handwriting,
repeatedly folded the page until it was a tiny cube,
and gave it to Christen for safekeeping.
“Now you won’t forget, will you, chaplain?
Especially the part about my mom?”
“No,” Christen assured her, “I won’t forget.”

Amanda reminds all of us:
our care receivers are often
quite good at caregiving too.
Sometimes they’re watching over us
without our even knowing it,
just like Amanda is watching over her mom.

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Slow III

March 17, 2008

I’ve been advocating
Slow Caregiving.
I see this approach
as much an attitude
as it is a speed.
It’s a decision
to always keep the care receiver’s needs
in clear focus.
In an interview in The Washington Post yesterday,
travel expert Rick Steves described
the culture in Italian restaurants.
“Slow service,” he said, “is good service.”
How is that so?
It’s their way of showing
they respect you, they like you.
“Please feel free to stay all night”
is what they’re communicating.
Unlike most American restaurants,
where it’s frowned upon to linger too long,
the Italian attitude is,
“Take whatever time you wish.
It is, after all, your meal.”
Carl Honore makes this distinction
in his book In Praise of Slowness:
“Fast is busy, controlling, aggressive, hurried, analytical, stressed, superficial, impatient, active, quantity-over-quality. Slow is the opposite: calm, careful, receptive, still, intuitive, unhurried, patient, reflective, quality-over-quantity. It is about making real and meaningful connections—with people, culture, food, everything. The paradox is that Slow does not always mean slow.”

Slow Caregiving means bring receptive
to what’s ultimately right for the care receiver.
Maybe they’d like certain things
to happen more quickly.
Slow Caregiving says, “We’ll try that.”
Maybe they’d like time to interact,
to talk, to reminisce, to linger.
Slow Caregiving says, “Let’s tarry here.”
Maybe there’s an emergency.
Slow Caregiving says, “Let’s hustle now!
Time is of the essence!”
Then a Slow Caregiver rushes ahead
with, as much as possible,
a Slow frame of mind—
intuitively, assuredly, calmly,
and with great caring.

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