Archive for the ‘Caregiving Lessons’ Category

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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Slow II

March 13, 2008

It all started
with a hamburger.
In 1986 McDonald’s
opened a franchise
in Rome, Italy,
near the Spanish Steps.
The Italians were not happy.
They had always cooked slowly and eaten leisurely,
allowing plenty of time to savor
the food and drink and company.
They had no desire for fast food,
which included fast ordering,
fast cooking, and fast eating.
So they organized an angry protest,
brandishing bowls of penne pasta.
Thus the Slow Food movement began.
The idea soon spread:
Slow Cities,
Slow Travel,
Slow Living,
always spelled with a capital “S.”
Now Dennis McCullough, M.D. has written
a book entitled My Mother, Your Mother
in which he advocates Slow Medicine
for caring for our aging loved ones.
He writes about those over eighty,
“…[T]his particular group of elders has the highest likelihood of benefiting from care that is more measured and reflective, and that actually stands back from the rushed, in-hospital interventions and slows down to balance thoughtfully the separate, multiple, and complex issues of late life.”
I agree with Dr. McCullough’s assessment.
I would go so far as to argue
that all people, whatever their age,
can benefit from measured and reflective care,
beyond emergency situations, of course.
That includes the kinds of situations
in which most of us are involved
as we care for our loved ones,
in our homes, in their homes,
and in healthcare facilities of many sorts.
Following Dr. McCullough’s lead,
I suggest that we practice Slow Caregiving.
I advocate that we go slow enough
so we can have time enough.
Time enough to really look at the other person,
to really see them.
Time enough to really hear
what they have to say,
to really listen to their hearts,
to really connect with their souls.
Time enough to come to understand
how and when our caregiving succeeds,
as well as how and when and where
our caregiving could be more useful,
more appropriate, more caring.
Time enough to savor any joy,
to linger over any closeness,
to fully appreciate every single appearance
of authenticity.
Time enough, in short,
to really care.

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Slow I

March 10, 2008

I can hurry with
the best of them.
I’m easily impatient
waiting in lines
when I’m shopping.
I’m on the lookout
for ways to speed my trip when I drive.
I’ve never been nominated for any award
that is based on leisureliness,
on choosing to go slowly.
These days, however, I’m learning the value
of another way of proceeding.
When I walk with Dad,
he takes short, deliberate steps.
It’s all he can do.
When we eat together,
his arm moves in slow motion,
and so does his mouth.
So I’m learning to adjust my pace
so it’s suited to his.
When I shaved him the other day,
kneeling on the floor
while he sat in his comfortable chair,
we spent a third of an hour
close together, side by side.
The lather, the razor, the towels
all figured into our ritual.
So did our quiet conversing,
and my re-doing that cleft in his chin
four times in a row,
and my running my fingers across his cheek,
searching for any errant stragglers.
It felt peaceful to take our time.
It felt gratifying to rub his skin,
dry his neck, clean his glasses.
It felt like a grace to joke with him
while simultaneously admiring him.
And when we were all done
and he said his gentle “thank you,”
I was as glad as he was
that we had lingered through those moments.
Had I moved quickly and mechanically,
we would not have felt as connected.
Had he not allowed this unhurried intimacy,
we would have missed this opportunity
to be father and son
in yet another way.
I’m learning,
appreciatively and now even willingly,
that slowness carries its own blessing.

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Respite III

February 28, 2008

Every single caregiver
needs time off
and time away.
All caregivers
need occasional freedom
from everyday responsibilities.
All of us deserve to have periods of time
not devoted to caring for someone else,
however much we love that person.
We need to run errands.
We need to keep appointments.
Some of us need to attend meetings,
others, to show up at work.
We may have hobbies to engage in,
friends to spend time with,
other family members to focus on.
And—this is very, very important—
we have something else to do:
next to nothing at all,
if it feels right.
Every now and again,
the best use of an hour might be,
not in “using” it,
but in simply enjoying it.
Working a crossword puzzle, for example.
Playing a computer game.
Reading a second-rate mystery.
Watching a third-rate TV show.
Gazing out the window.
Doodling with colored pencils.
Leafing through photo albums.
Surfing the internet.
Skipping stones across a pond.
Identifying the shapes in clouds.
Or closing our eyes
and not identifying anything at all.
Bertrand Russell had it right:
“The time you enjoy wasting,
is not wasted time at all.”
Sometimes the best management of time
for a really dedicated caregiver
is to become a dedicated loafer,
a serious slug,
a committed dawdler,
a staunch goof-off,
a world-class putterer.
If we have any questions about this,
we can tell ourselves that Bertrand Russell,
the famous and much-published philosopher,
said so.

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Respite II

February 25, 2008

David’s wife, Carol,
is chronically ill.
She’ll never get better.
David watches over her
day in, day out.
A neighbor once said,
“Just ask if there is anything I can do.”
David immediately responded, “I’m asking.”
“What is it you need?”
“Someone to be with Carol a few hours
every now and again,
so I can do things on my own.”
The neighbor happily agreed,
pleased to know exactly what would help.
David happily accepted her offer.
And Carol happily has social visits
from her neighbor and friend,
times she can look forward to.

Caregiver respite takes many forms.
People might come into our home,
or our care receiver might go to another’s home,
or perhaps to an adult day care center.
Arrangements might be made for full-time care
in an accredited facility
for a specified period of time.
Family members can provide respite care,
as can friends and neighbors,
colleagues and community volunteers,
as well as professionals of various sorts.
However respite care is handled,
research shows that it’s most beneficial
if it meets several criteria.
It’s best when the respite is regular—
a time the caregiver can plan for
and look forward to.
Each respite should provide enough time
to do something the caregiver wants to do;
a quick break is usually not enough.
The respite time should be geared
to the caregiver’s needs and desires—
the ideal timing, frequency, duration, and location
will vary from person to person.
It’s most beneficial if the caregiver
plans the use of the time in advance,
even if the plan is “I’m going to read
my favorite author’s latest novel.”
Whether the respite time is spent
in great activity or comparative inactivity,
the benefits readily add up
and healthy caregiving is naturally supported.

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Heroism

February 18, 2008

“It’s really amazing
all she does
as a caregiver!
Her efforts
are heroic.”
Have you ever heard
comments like this before?
I have, a number of times.
A loyal wife quits her job to provide
around-the-clock care for her husband.
A retired man pushes his limits,
refusing to let anyone help him,
as he cares for his increasingly combative wife
who’s debilitated by Alzheimer’s disease.
“That’s heroism in action,”
people say in praise.
Without question, all around us
are everyday caregivers who are also
everyday heroes.
Such people deserve our respect and support.
But I fear a danger can lie
in labeling such behavior “heroic.”
When caregivers disregard their own health,
becoming so ill they can no longer provide
quality care, or any care at all,
is that ultimately heroic?
When caregivers neglect families
or sever ties with close friends,
creating barriers while isolating themselves,
is that heroic?
When caregivers refuse others’ assistance,
especially when their care receiver would benefit,
is that really heroic?
I propose that we rethink our idea
of what constitutes heroic caregiving.
I think truly heroic caregivers find ways—
however challenging this may be—
to watch out for their own health no less
than for the one in their care.
I believe true heroism can be shown
when other relationships are simultaneously honored,
other roles are lovingly preserved.
I propose that caregiver heroes
are those who honor their own needs
over the course of time,
protecting their own wholeness and well-being.
I believe the gloriously heroic
is within reach of all caregivers.
It requires not so much superhuman effort
but very human wisdom and understanding,
for oneself as well as for others.

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Unexpected

February 14, 2008

My friend Paul Johnson
is primary caregiver
for his wife Barb.
Recently he told me
a funny story
from two years ago.
Barb was at the Mayo Clinic,
about to undergo her third brain surgery
in just over four weeks.
There was real uncertainty
about her surviving the procedure.
It was a very stressful time.
Standing beside the gurney,
a nurse asked Barb three questions
to confirm that the right patient
was about to have the correct surgery.
“Your name, birth date, and type of procedure,”
said the nurse.
In an especially clear voice Barb said,
“Barbara Johnson, March 26, 1951,
breast augmentation surgery.”
It took a couple of eyeblinks
following Barb’s unexpected response
before Paul and the nurse, in his words,
“totally cracked up.”
Barb’s lively sense of humor lightened
an uncomfortably tense time,
and it continued to do so
each time Paul retold the story
to her concerned family and friends.

Paul now calls these experiences of finding
the humorous in caregiving situations
“like finding an oasis in the desert.”
It’s cheering and refreshing.
Such joking, especially from the care receiver,
also puts the topic being joked about
out in view of everyone.
It gives gentle permission to talk about
what may have been avoided in conversation
even if it’s been on everyone’s mind.
Often all it takes is a couple of words,
a look on one’s face,
or a wink of the eye.
This slightly unexpected human exchange
can brighten spirits and lighten loads instantly.
An infectious smile or a sudden laugh
can illumine a space that had been
uncomfortably dark only a moment before.

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