Archive for the ‘Caregiving & Feelings’ Category

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.

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Thank You

January 24, 2008

Earlier this week
I was in Sioux Falls
presenting about caregiving.
Three sorts of people
were in the audiences:
family caregivers,
volunteer caregivers,
and professional caregivers.
I ended my talk as I often do,
expressing words of appreciation to them
as individuals and as a group.
As I looked into their faces
while speaking my feelings and thoughts,
I saw tears in people’s eyes.
I believe that was because
they were not used to having
their dedication so publicly recognized,
their work so honestly affirmed.
My words to them that day were impromptu,
so I cannot recreate my exact message.
But this is the sort of thing
I attempted to express then,
and what I express to you now,
you who are finding meaning
in reading The Thoughtful Caregiver:

The work you do as a caregiver
is far from easy.
It requires not just physical energy
but mental discipline and emotional stamina.
And not just occasionally but day after day.
Much is asked of you:
your positive attitude,
your compassionate stance,
your openness to feelings,
your willingness to listen well.
Much is needed from you:
your nonjudgmental acceptance,
your heartfelt honesty,
your unashamed humility,
the courage to be vulnerable,
to be authentic,
to be human.
Sometimes it may seem
that your work is never done.
It may feel as if
the responsibilities are much to bear.
You may experience a loneliness
that you wish you didn’t.
On top of all this,
you may not hear many words of appreciation
or be shown many signs of support.
But know this:
you are doing something very important,
even if recognition of this is overlooked,
even if gratitude is in short supply.
You are making a difference in another’s life,
perhaps in more ways than you know.
You are living out the meaning of love,
even if that is not always obvious,
or sure, or comfortable.
So for all these reasons and many more,
thank you.
Thank you for all your caring in the past.
Thank you for what you are doing
and what you are standing for,
right now, right where you are.
Thank you for being ready to carry on tomorrow
with every bit of determination
that you can lovingly muster.
Just this: thank you so very much.

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Imperfection

January 21, 2008

Lynn’s mother was,
in many ways, charming.
She was also,
in as many ways,
an accomplished perfectionist.
Not surprisingly,
she and Lynn had their difficulties
through the years.
When her mother became seriously ill,
Lynn arranged to spend extended periods
at her mother’s side, half a continent away.
At first things went well—
they were pleased to be together
after many years of being apart.
But eventually old patterns emerged.
Lynn felt she couldn’t do much that was right
in her role as a caregiver,
no matter how hard she tried.
Terribly frustrated and distraught,
Lynn went to see a counselor.
“I can’t measure up,” she said,
“to my mother’s sense of perfection.
I’m always falling short.”
The counselor asked, “What are your options?”
“As I see it, there are only two:
perfection and imperfection.
I can keep trying to be perfect,
or,” Lynn said, almost laughing,
“I can strive for imperfection.”
Said the counselor with a smiling nod,
“Bingo.”

Striving for imperfection is not at all
the same as settling for mediocrity
in our roles as caregivers.
To strive for imperfection means to let go
of pursuing impossibly high standards,
ones that no human being
can meet without fail.
Rather than working feverishly to achieve
the ideal of spotlessness,
might we not aim for allowing
a few spots to appear here and there?
Rather than imposing incessant orderliness,
why not endeavor to accept—
perhaps even to welcome—
some casual disorder now and then?
Rather than chasing flawlessness,
why not relax a bit and resolve to admit
a random flaw in how we do our work
without becoming horribly upset?
Rather than letting someone dictate
what’s impossible for us to achieve—
knowing that “someone” might be us—
why not let ourselves dabble
with our natural, God-given fallibility?
Why not sometimes favor inexactness
where exactness matters not at all?
Why not choose to be hopelessly human,
realizing that’s actually the same—
some would say perfectly the same—
as being hopefully, blissfully, genuinely human?

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The Paradox

December 19, 2007

In “The Vital Role”
Amanda Fortini describes
the unusual illness
she got in Belize.
For several years
she experienced waves
of weakness and nausea very unpredictably.
She tells how a near stranger
became her caregiver.
“J” is the only name Amanda gives
this spirited woman, 20 years older,
who first moved into Amanda’s apartment,
and later took Amanda into her own place.
J cooked, cleaned, and cared
for Amanda months on end,
quite willingly, always without pay.
While Amanda enjoyed J’s companionship,
she felt something else too:
One of the most trying aspects of being sick is being cared for, as counterintuitive and thankless as that may sound. Nothing makes a person feel out of control—and illness by definition is a loss of control—like having to cede it to another person.
Later on she quotes Virginia Woolf
before making her point again:
“Always to have sympathy, always to be accompanied, always to be understood would be intolerable.” This is the great paradox of being cared for; as much as you want someone there for you, you also, in the end, don’t.

Amanda Fortini’s writing invites us to consider
the situation of the one in our care.
After putting ourselves in the other’s shoes
(or slippers or pajamas or hospital gown),
we might pose several questions.
What are the dominant feelings nowadays
of this person in our care?
Are these feelings comfortable or uncomfortable?
What are the changes they have undergone
as a result of their illness or incapacitation?
Are these changes wanted or unwanted?
What has happened to their sense of identity?
Their sense of worth?
Their sense of life satisfaction?
How might all this influence
how they relate to us?
And how might they be feeling
about this caregiving of ours
that they’re regularly receiving?
Might any part of them identify
with Amanda Fortini’s feelings,
not wanting us to be there as a caregiver?
Our answers to these questions deserve
to inform how we do what we do
if thoughtful caregiving is our goal,
don’t you think?

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Wishes

December 14, 2007

The Diving Bell
and the Butterfly
is a true story.
Jean-Dominique Bauby,
a 43-year-old Frenchman,
suffered a massive stroke.
He was left with his full mental capacities,
but he lost control of his body.
Literally he could do only one thing—
blink his left eye.
He was victim of what’s called
“locked-in syndrome”—
he was locked in his body.
Arduously he learned to communicate
through the help of a speech therapist.
She devised a special tablet
on which he could identify alphabet letters
by the use of his blinks,
laboriously creating words, then sentences.
In the movie version of the story,
he finally blinks his first message.
It is, “I want to die.”
His caregiver, the therapist, is outraged.
She responds fiercely,
“How dare you!
That’s a terrible thing to say!
I’m not putting up with that.
You think of something else!”

Sometimes we caregivers may not like
what the one in our care expresses
in all apparent honesty.
We may be troubled by what they feel
and by how strongly they feel it.
We may be tempted to respond
in the manner of that speech therapist.
“No, don’t say that!
No, don’t feel that!”
In situations less extreme,
we may find ourselves wishing that
this other person acted happier,
or chose to talk more,
or showed greater interest in life.
Such wishes, and others like them,
can be common among caregivers.
But I’d like to ask this question
of all caregivers, including myself:
Who are such wishes really for?
Entirely for the one in our care?
Or do they involve us too?
How much are our wishes
a reflection of our own needs?
How much are we wishing to avoid facing
the other’s despair,
or the other’s loneliness,
or the other’s fears?
How much are we wanting to feel better
about how well our caregiving is going?
How much are we pushing away,
whether it’s conscious or not,
our own uncomfortable feelings?
True, our desires may relate only
to the one in our care
and not be about us at all.
But it’s worth our looking within
and becoming honest with ourselves
and owning what is ours to own.
The other person deserves that.
So do we.

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Protection

December 12, 2007

Grace, age five, fell
and broke her arm
in dancing class.
After surgery, strep infection
invaded her bloodstream—
a very serious situation.
Her mother, the writer Ann Hood,
did all she could for her daughter,
sleeping at night on the hospital floor.
But the infection could not be stopped
and, tragically, Grace died.
In a memoir Ann laments,
“Somehow I had let this horrible thing
come to her.
I had not done my job.
I had not protected her.”

There really wasn’t anything more
Ann could have done for Grace—
the story makes that clear.
Still the mother felt
she had failed her daughter, critically.
She had not prevented what happened.
Ann’s situation was extreme, to be sure.
But the feelings she had as a caregiver
are not all that unusual—
feelings of yearning to protect
while being unable to protect.
This is especially true if the one
in our care is a child,
or someone younger.
However, it can also happen
with anyone we love,
anyone we’re connected to,
whatever their age.
We want to protect.
We’re geared to protect.
More, we ought to protect—
it is our role.
And often some part of us believes
that we can protect,
no matter the circumstances.
But reality teaches us a lesson:
it is physically impossible for us always
to “be a cover in front of,”
which is the derivation of protect.
We cannot hold a screen against
every hurt, every accident, every illness.
We cannot serve as a shield
against anything ever going wrong
with someone we’re close to.
We cannot be a barrier
to another’s disappointments,
to all their sorrows.
We cannot stop natural aging,
natural weakening, and natural dying.
But that doesn’t mean we’re incapable
or that we’re failures in our role.
In fact, it is the capable caregivers
who understand the limits
of their ability to protect
and—however much they wish otherwise—
make their peace with those limits.

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Limits

December 7, 2007

Andrew Solomon has written
“Notes on Accepting Care”
in the new anthology
An Uncertain Inheritance.
He describes a time
when he was clinically depressed.
Even getting up and taking a morning shower
was more than he could handle,
so he would stay in bed all day.
His mother had recently died,
so it fell to his father to care for
this unmarried adult son.
Andrew depicts what it’s like
to be on the receiving end of care
as a very depressed person.
He makes two points (among others):
“A depressed person cannot be drawn
out of his misery with love.”
Love alone will not do it,
however hard we try as caregivers,
however much we care.
A truly depressed person
may not believe that love,
or be able to accept,
or know how to respond to it—
that’s beyond them.
The second and related point is,
“You cannot undepress another person.”
As people who want to help,
we may not wish to read Andrew’s words.
They seem to call into question
our ability to make a difference.
But that’s not the case, really.
For his complete sentence reads,
“You can’t undepress another person,
but don’t leave.”
Choosing not to leave—
that what we can do.
As trying as it may be, we can stay,
refusing to desert them.
We can sit with them in their woeful place,
so they’re not left entirely alone.
We don’t have to talk—
in fact, talking may get in the way.
We don’t need to hover—
in fact, waiting around the corner
may be what works best at times.
We can resolutely remain within reach,
performing small everyday acts of care,
while believing and hoping
and patiently continuing to love.
And those acts of ours
can help make a real difference,
in the fullness of time,
as other factors come into play,
as healing comes to work its magic.
We cannot undepress another person,
but we can accept them as they are
in their bleak darkness.
We can wait with them there,
holding a light that glows
more than it penetrates,
believing that their own light
can one day return.

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Clouded: The Depression Series IV

December 5, 2007

Our friend Patty cared
for her husband Walt
until he died of cancer.
I can still remember
how Patty looked
during those long months.
Sadness clouded her eyes,
replacing what had been a twinkle.
Her voice lost its inflection and energy.
“This is so depressing,” she said.
“I know,” I said, nodding,
not knowing what else to say.

Patty was depressed
as she cared for Walt so valiantly,
yet also so helplessly.
Their retirement plans were dashed.
Their long marriage was ending.
Walt was suffering on some days.
Who wouldn’t be depressed?
That’s what I told her:
“Your depression makes sense.”
Another time I said,
“Hang in and ride it out.
Things will eventually look different.”

We’re inclined to push away dark times.
We don’t see value in them.
We think there is something wrong
about being depressed.
But I wonder.
Is it wrong?
To be clear: I would never advocate
that anyone seek depression.
Yet it seems to me
that when depression accompanies a time
of suffering or loss or helplessness,
it comes with some reason behind it,
some meaning attached.
It comes with a message:
“This is sad and unfortunate;
this does hurt.”
There are times when that message
is the unavoidable truth.
When that is the case,
then avoiding truth means avoiding life.
So if we move toward the depression,
if only a little,
rather than running from it,
what might happen?
Might we come in time
to an honest and compassionate acceptance
of our natural human limits?
Might we come eventually
to a more serene understanding
of life’s inevitable realities?
Might we someday arrive at
a surer awareness that we are held in love,
even when we wonder?
Might we come to realize
that depression need not hold
the final word—
that joy may hold it,
or perhaps peacefulness,
or deep, deep gratitude?

By the way,
the twinkle has returned to Patty’s eyes,
though it’s a little more radiant.

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