Archive for December, 2007

Joy

December 24, 2007

May you and the one in your care
not just see blessings,
but experience blessings,
not just share blessings,
but be blessings.
May the encouragement
of Ralph Waldo Emerson
invite us all:

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Rewarding

December 21, 2007

Not long ago
Caring Today magazine
conducted a study.
500 family caregivers
were asked about
their experiences.
As we all know,
studies like these often point out
the difficulties and dangers of this work.
The likelihood of increased stress.
The danger of depression.
The low levels of self-care.
So I studied the tabulations of their answers
with particular interest.
First, there was the issue of expectations.
46% of the 500 respondents
said they anticipated they would enjoy
the tasks associated with their caregiving.
How many actually did enjoy
doing what they did?
69%.
Isn’t that interesting?
They were also asked if they expected
to find their caregiving rewarding.
60% said they imagined they would.
How many really did find this true?
79%.
The other issue related to lifestyle.
When asked what feelings or actions
had increased as a result
of their becoming caregivers,
respondents reported the following:
33% said they felt more focused in life.
41% said they had become more organized.
And well over half—59% to be exact—
said the quality of the relationship
with the one in their care
had increased.
These findings in no way deny
the inherent strains and risks
associated with becoming a caregiver.
But they do force us to look at
other aspects of this work too.
Maybe the figures above
confirm our own experience.
Or maybe we’re among those
who experience less enjoyment
and less reward.
Either way, we can know two things:
We are not alone in our feelings.
And the possibility of increased closeness
and deepened meaning
unquestionably exists.

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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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Hope

December 17, 2007

My wife and I
were to make
the hour-long trip
to see Dad yesterday.
A snow storm
had other plans.
I called Dad to tell him
we weren’t coming.
“Are you sure you can’t make it?” he asked.
I started to explain about
the strong winds and drifting snow.
Then I heard him chuckling.
“Son, I was kidding you,” he said.
“You stay off those roads today.”
It felt good to receive his humor,
which I wasn’t expecting.
Before hanging up I joked back.
“Better fire up your snow blower
to make sure it’s ready for winter.
That’s a big parking lot you have
at your assisted care facility.”
Dad had always kept all his engines
ready for the upcoming seasons.
He chuckled again.
“Probably not.
I believe those days are behind me.”
And he spoke those words
not with regret or disappointment,
but with quiet acceptance,
if not a certain contentment.
Those had been good days for him.
Now these days, despite their restrictions,
are good in a different way.

A piece in The New York Times last week
reported on research led by Dr. Peter Ubel,
a physician at the University of Michigan.
What helps people acclimate themselves
to unwanted changes, to life’s adversities?
Interestingly, people who cling to hope
may experience less life satisfaction afterward.
Why would that be?
It relates to whether we see such a change
as temporary or permanent.
As Dr. Ubel explains,
“If your condition is temporary, you’re thinking,
‘I can’t wait until I get rid of this.'”
Ubel believes such thinking keeps one
from moving on with life
and focusing on the good that remains.

I believe that once Dad let go
of hoping he’d return to his former abilities,
he could begin to settle in
with what life now holds for him.
He has an acceptance and peacefulness
I didn’t understand at first.
But Dr. Ubel’s findings make sense
in light of what I see in Dad.
I’m a firm believer in hope,
but I’m also aware that
hope has its legitimate limits.
In some cases reigning in one’s hope
can lead to greater happiness,
as contradictory as that may seem.

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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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Mundane

December 10, 2007

This entry doesn’t really
have a theme.
All I have is
a tiny story.
I spent Saturday
with my father.
He lives in an assisted living apartment
an hour away.
We ran some errands
and ate at his favorite spot, Bob Evans.
In the afternoon he lay on his bed
while I set up an ironing board
in his small living room.
He napped and I ironed.
The staff there does his laundry weekly
but they don’t do ironing.
Nice clothes were never a priority for him,
but I’ve become aware that nowadays
his pants look more wrinkled,
and his shirts have more soiled spots.
Dad’s eyesight is so diminished
that he can’t see the difference.
But I can.
Others can.
So I stood there, cleaning spots
and pressing out wrinkles.
Before long I had two realizations.
First: “I’m happy doing this.”
Second: “This is meaningful to me.”
I was performing this very mundane task
with great contentment
because it was for Dad.
His hands couldn’t do it
and mine could,
so it was perfect that mine did.
He couldn’t see the results
but he deserves being clothed in this way,
so I ironed very attentively,
taking special care.
He didn’t expect this act at all,
but he had cared for me
in so many ways through the years,
and now I could care for him
in a tiny, personal way.
There was nothing more I wanted
to be doing while he slept.
Nothing more I desired
when later he sat in his chair
and we chatted and reminisced
while I stood opposite, iron in hand.
It doesn’t happen all the time,
but sometimes caregiving is so simple,
so basic, so tactile, so natural,
such a minor expression of a major love,
that one feels,
“This is just right!”
And it is.

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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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