Archive for February, 2008

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.

Click on this image to enlarge it. Then right click to print it, send it to another, or use as your desktop wallpaper.

Please select this LINK for a printable version of this image.

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.

Click on this image to enlarge it. Then right click to print it, send it to another, or use as your desktop wallpaper.

Please select this LINK for a printable version of this image.

Respite I

February 21, 2008

Last week I spoke
with a woman
who’s the main caregiver
for her husband.
A serious brain injury
now prevents him
from working, driving, walking very far,
even from being alone for very long.
Her daily life has changed radically
since he was hurt eight years ago.
I asked her how she kept going.
“Respite care,” she replied.
“I take him to an adult day care center
three days a week.
I’m able to work part-time,
plus have a little time to myself.
Having this new-found freedom,
while knowing he’s cared for and safe,
has made all the difference.
My spirits have really lifted.
I’m a better caregiver for this, too.”

Respite has several dictionary definitions.
Among the oldest is this: “to relieve
by a pause or interval of rest.”
A caregiver respite is a temporary relief
from the responsibilities related to the one
who’s in daily care.
Allowing for such help when it’s offered
and arranging for it when it’s needed
are invaluable aids to healthy caregiving.
A break from caregiving refreshes.
It can provide a needed perspective.
It helps one become more grounded,
more steady, more stable.
It protects one’s individuality
and preserves one’s sense of independence.
Clearly, respite is not a caregiver luxury.
It’s a caregiver necessity.

Click on this image to enlarge it. Then right click to print it, send it to another, or use as your desktop wallpaper.

Please select this LINK for a printable version of this image.

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.

Click on this image to enlarge it. Then right click to print it, send it to another, or use as your desktop wallpaper.

Please select this LINK for a printable version of this image.

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.

Click on this image to enlarge it. Then right click to print it, send it to another, or use as your desktop wallpaper.

Please select this LINK for a printable version of this image.

GivingReceiving

February 11, 2008

My brother Mike
created a company,
then sold it.
He was employed
by the new owner
for a while.
Without much notice that contract ended
and Mike found himself suddenly retired,
a vigorous 61-year-old.
All this happened while he was engaged
in some carpentry work in our home—
a new digital darkroom for me,
a quilting room for my wife.
Mike is very handy in that way;
I look foolish with a hammer.
He finished this volunteer work yesterday.
We thanked him with gusto.
I gave him some of my photographs.
Bernie gave him one of her lovely
quilted wall hangings.
This morning I had an email from him:
Working on your projects has been good for me. It meant the reawakening of my woodworking energy after fifteen years of dormancy while I built my company. It has smoothed the transition of my daily activities and goals from being business-oriented to being avocation-oriented. That’s a huge change for someone as hard-working as we Millers tend to be.

Technically Mike has not been my caregiver
these recent weeks as he has done
so much to create our “happy rooms,”
as Bernie calls them.
But unquestionably he has shown caring for me
with all his hard work,
which he did just because
he’s such a sweet and generous man.
Some days it was a little difficult
to accept all his kindness
which flowed from him so freely.
But his email today reminded me—
he got something in return.
His transition became less painful,
more purposeful.
He reconnected with his creativity.
This morning he’s excitedly designing
his own new “happy room,”
as he dismantles his home office.
And me?
I was on the receiving end
of so much that Mike gave.
But in allowing him to give,
appreciating and valuing all he did,
I gave to him too,
without even quite knowing it.
In giving, Mike received.
In receiving, I gave.
It all merged together.
Mike gavereceived.
I receivedgave.

As with the two of us,
so with caregivers and care receivers
everywhere.

Click on this image to enlarge it. Then right click to print it, send it to another, or use as your desktop wallpaper.

Please select this LINK for a printable version of this image.

Weird Perspective

February 7, 2008

Julia Glass had cancer,
and more:
Surgery.
Chemotherapy.
Pain.
Fear.
She and her husband Dennis
also had something else after a while.
As she relates in An Uncertain Inheritance,
Wit, I came to realize, is a precious and essential kind of care when one is ill—not jokes; just the weird new perspective of someone who stands on the outside yet loves you and wants to see you well and happy. Dennis had recently spotted bicycle messengers zipping around town with LED strips mounted behind them, clever advertising space for all manner of local commerce, from ministorage to livery cabs. My bald head, he suggested, might be useful to sell as an advertising opportunity. We decided I could wear an LED headband with a revolving commercial similar to the strip of headlines that orbits the center of Times Square. “How about,” I suggested, thinking of all the pharmaceutical ads lately proliferating on TV, “‘Adriamycin! Ask your doctor if it’s right for you.'”

Comedy, Lenny Bruce once said,
is tragedy plus time.
As caregivers, we may face the tragedy
of another’s disease or accident or serious loss
as we go through our days with them.
Early on, the sadness can be severe,
the misery unavoidable.
But over the course of time,
often something begins to shift.
Even if the gravity of the situation is
no less real, no less daunting,
it somehow becomes more familiar,
more usual.
So what do we do next
when the heaviness becomes old hat?
Sometimes we joke about it,
as one way of facing this hard reality
and including it in our conversation,
without succumbing to it,
without giving it complete power over us.
As we jest in a manner
that has a dark humor to it,
and as we smile at these weird thoughts,
we partially diffuse some of the fear,
some of the dread.
We lay claim to our humanity
by choosing to laugh freely
at what once brought tears.
Sorrow, we’re reminding one another,
is only part of the story.
When we can laugh,
even with a quirky sense of humor
that others may not understand,
we look unflinchingly at what we’re facing
and say clearly, “Joy still exists.”
So does hope.
So does our bond,
strengthened by this amusement we share.

Click on this image to enlarge it. Then right click to print it, send it to another, or use as your desktop wallpaper.

Please select this LINK for a printable version of this image.

A Lot

February 4, 2008

Young mother Julia Glass
struggled with side effects
of her chemotherapy
after breast cancer surgery.
Some nights she sat up
in bed, unable to sleep,
her bones aching.
Her husband would sit beside her,
sometimes feeding their baby.
“My body really, really hurts,” she’d moan.
“I wish I could do something,” he’d say.
Just touching her, however,
caused her even more pain.
So he’d lean against the pillows beside her
in the darkness, often in silence,
holding the baby,
accepting whatever his wife wanted to say,
whatever she needed to do.
Julia makes an important point about this
in the book An Uncertain Inheritance:
What I didn’t tell him, but should have, was that he was doing something just by being awake with me. I began to understand that taking care of someone doesn’t always mean doing something for that person; there isn’t always a hot toddy or a water bottle or an ointment to soothe. Being is just as important as doing. Being awake. Being present in the next chair. Being funny. Being smart in a surprising, useful way. Being sympathetically perplexed. Being a mirror for the expression of pain.

Julia knows.
So do legions of other care receivers.
You and I do a lot as caregivers,
helpless as we may feel,
when we remain awake,
listening in the darkness.
When we nod our heads,
showing that we’ve heard,
that we understand as well as we’re able.
When we look them full in the face,
letting them see our face too.
When we remain close,
sensing that’s what they need.
When we give them their space,
if we sense that’s what they need.
When we still our bodies,
so that we’re not fidgeting,
not creating a distraction.
When we willingly witness their tears,
without showing discomfort or alarm.
When we smile,
just because.
We can be doing something very important,
something that makes a real difference,
when it doesn’t appear
we’re doing anything at all.
Maybe we’ll be told about that difference,
and maybe not.
But the difference is real,
whether the message comes back to us
or it’s kept inside.
The difference itself is what ultimately matters.

Click on this image to enlarge it. Then right click to print it, send it to another, or use as your desktop wallpaper.

Please select this LINK for a printable version of this image.