Archive for the ‘Validation’ Category

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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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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Caregiver Care

December 3, 2007

Audrey’s husband has
long-standing health problems.
He’s been near death
more than once.
Now her daughter,
who lives by herself,
has been diagnosed with an arterial blood clot.
The prognosis is uncertain,
both short-term and long-term.
Audrey’s daughter-in-law, who lives nearby,
is struggling with her father’s impending death,
as is that whole family.
So fear and anxiety fill Audrey’s days.
She is on caregiver overload.

My wife Bernie and Audrey are friends.
So Bernie invited Audrey over Friday morning.
She prepared special muffins
and coffee in holiday cups.
She started a fire in the fireplace,
lit candles around the living room,
and put on quiet background music.
When Audrey arrived, they sat on the couch,
watched the fire, and talked at length.
Bernie mostly listened and empathized.
Audrey spun out her feelings and concerns.
But after awhile she also spoke about
the everyday events of her life—
her quilting, Christmas plans, other friends.
The warm atmosphere and the set-aside time
worked together to create a space
that Audrey could make her own
and do with as she pleased.
That’s exactly what she did.
By the time she left,
nothing had changed about Audrey’s situation,
but she had changed a little.
She was a little more relaxed,
a little more refreshed,
a little more ready to return to her life.
Audrey had been on the receiving end
of Bernie’s restorative care.

When we think of giving care to others,
we often think of the ill, the disabled, the dying.
Sometimes those who need our caregiving
are other caregivers themselves.
Who will encourage those around us
who strive so hard to encourage others?
Who will care for those
who deserve and need such care
as much as they’re hesitant to ask for it?
We can.
We who have been where they have been,
and understand.
We who have, at the moment,
the time and freedom to do that,
or we can make both of those.
We who know that caring for caregivers
is tremendously important,
and easily overlooked,
and beneficial beyond words.

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Equal

November 14, 2007

I read an interview
with Lonnie Ali,
wife of Muhammed Ali.
He has Parkinson’s disease.
She referred to herself
not as his caregiver
but as his care partner.
I believe the language we use—
as a culture, as families, as individuals—
indicates the values we hold
and the principles that guide our lives.
So I lingered on her deliberate description
of who she is in her role.
As I have written elsewhere,
if we see ourselves principally as caregivers,
then someone else must necessarily be
on the other end of all that giving.
That’s how the term care receiver
came into being.
While it’s possible to maintain true equality
between self-named givers
and commonly-referred-to receivers,
I believe it is difficult to do so.
Those who are always on the receiving end of things
usually come to feel that they’re
not as strong, not as important,
not as valid.
So I like this idea of care partnering.
I like what it signifies:
we share in something;
we participate together;
we’re equals.
Indeed, that is our clear reality.
We were equally given birth
and we are equally moving to our deaths.
We are equally individual,
equally deserving of attention,
equally due common respect.
Any feelings we have are equal.
So are any yearnings, any dreams, any hopes.
We’re equally prone to mistakes,
equally capable of regrets,
equally called to forgiveness,
equally qualified to be forgiven.
Our pasts are equally a part of us.
Our futures on earth are equally unknowable.
We are absolutely equally human.
We are made up of equal sparks of the divine.
So Lonnie is right—
at the ground of our common experience
we are nothing less than even partners
from beginning to end.

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Not Random

November 7, 2007

“Practice random acts
of kindness.”
It’s reported Anne Herbert,
writer and peace activist,
wrote this first on a napkin
in a restaurant in 1982.
Her playful phrase developed into a whole movement.
Now there’s a foundation by that name.
There are books and T-shirts and websites.
We hear of drivers paying the tolls
for the cars in line behind them,
practicing kindness randomly.
Diners pay for others’ meals anonymously.
People clean snow off the autos of strangers.
These are serendipitous gestures,
filled with good feelings.
Beth Mcleod in her significant book Caregiving
guides our thoughts in another direction:
I submit that family caregivers are proof that we are, all of us, much more capable of goodness than we imagined: not by random acts of kindness but by very deliberate ones, thoughtful and consistent and true.
I profoundly agree.
While there’s a loveliness to random kindnesses,
there’s also a sense in which
these are easy kindnesses—
easy to practice, easy to enjoy.
The acts of kindness practiced by family caregivers,
by caregiving friends and neighbors,
are of an entirely different character.
These acts are, if anything, more inspiring
than the popularized random ones.
These caregiving kindnesses are not occasional
but ever so regular.
They’re not done impulsively but methodically,
not quickly but thoroughly.
They occur not once
but over and over and over again.
Many caregiving acts of kindness are done
when the caregiver is tried,
when they’re frustrated or anxious,
or when they would much rather
be doing something far different.
Plenty of these acts are completed
when the one receiving these kindnesses
may not realize what is happening,
or understand all the effort,
or appreciate the selfless dedication.
I agree with Beth Mcleod:
all these deliberate acts of kindness
by caregivers all around us—
including the one or ones in our own home—
are more significant, more noteworthy,
and ultimately more beneficial
than those random and haphazard ones
celebrated by the media in recent years.
I celebrate faithful, steady acts of kindness.
You know very well the kind I mean.

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Without Realizing

October 26, 2007

I was once the speaker
at a recognition banquet
for hospice professionals.
I offered some general ideas
for healthy, effective caregiving.
I lauded them for their work.
Afterward a man introduced himself—
he was the husband of one of the nurses
who had been honored for her service.
“I never thought of myself as a caregiver,”
he said to me, “until I heard your talk.
I’m just a jeweler.
My wife is the caregiver.”
As I asked him a few questions,
I learned he and his wife
have a disabled teenage son
who is unable to walk.
This father helps with the boy’s daily needs,
lifting him and carrying him often.
He often takes the boy to the jewelry store
where he has converted a back room into a space
where the son can enjoy his days
while the father works nearby.
“I never thought of myself as a caregiver,” he said,
“but now I think possibly I am one.”

When we have had no specialized training,
when we’re given no formal job description,
when we receive no official recognition
that’s what we do and who we are,
we may not see ourselves as true caregivers.
When others do not validate us in this role,
we may not validate ourselves.
But let’s be clear:
Even without credentials,
we can still be true caregivers.
Even if we do not feel prepared,
we can still do strong work.
Even if we wonder about our abilities,
we can still make a vital difference
in another’s life.
Even if we’re not always aware
of the value or significance of our actions,
we are still giving care and spreading care.
We’re adding a loving influence,
to those nearby,
to those further away,
and equally important for this time we’re in,
to the universe at large.

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Unassuming

October 19, 2007

I just completed Eventide,
a novel by Kent Haruf.
It is a story
of several interwoven lives
in a small Texas town.
One of the characters is DJ,
a conscientious, quiet, 11-year-old boy.
DJ never knew his father.
His mother died when he was four.
So DJ ended up living with his grandfather
in a tiny, run-down house.
It was just the two of them.
His grandfather was in feeble health,
so rather than the man caring for the boy,
it turned out the other way around:
a concerned 11-year-old caring for
a stern, rigid 75-year-old.
DJ never complains,
never seems to resent all he must do.
He carries his unchosen responsibility maturely,
bravely.

DJ has been with me a lot
since I finished the book.
He reminds me of other caregivers I’ve known,
and new ones I’m continually meeting.
People who fulfill their role quietly, loyally,
because it’s what life has handed them.
People who do what’s called for,
despite their inexperience or lack of training,
despite the fact they would rather
be doing something very different.
People who carry on faithfully, day after day,
often under less than ideal circumstances.
People who do not expect recognition or reward,
let alone praise or acclaim.
People who give because giving
is the kind thing to do.
People who care because caring
is the right thing to do.
Probably you know such a person yourself,
and rather intimately.
I applaud you.

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Ugh: The Stress Series I

October 1, 2007

Mary is the mother
of 3-year-old Ben.
Two weeks ago he underwent
a 5-hour abdominal surgery.
At the end of his hospital stay,
a problem developed.
Ben was forced to endure two hours of excruciating pain,
while being held down by five hands—
what his father, Scott, described as
“abject (though medically necessary) torture.”
A couple of days later, with Ben now at home,
having five tubes and drains coming out of
different parts of his little body,
Mary went to get his prescriptions filled.
While waiting for these, she did some other shopping.
She wrote of her trip:
I went looking for PediaSure and Carnation Instant Breakfast drinks. I’ve been shopping at this store for seven years. I know where everything is. But I stood there paralyzed like a stone in a stream, moms rushing in a current all around me filling their carts, and I could not remember where those two things might be. Then I started crying. It was pathetic. I was trying to read the signs above the aisles, then I forgot what I was looking for altogether. Ugh.”

Mary is learning these weeks how stressful
caregiving can be.
Any of us may be learning the same thing,
or we may have learned it long before now.
Our stress may come as a result
of our feeling terribly upset, even alarmed,
about what the one in our care must endure.
We may feel overwhelmed by our responsibilities,
wondering if we can do what’s asked of us.
We may feel utterly exhausted
by what we’ve been through,
by what we’re continuing to go through.
At the same time, if we’re like Mary
(and I believe most of us are),
we may carry on bravely,
acting like everything is going pretty well,
not fully aware of how stressed we are.
Until we’re standing in the supermarket
and we start sobbing.
Or until we snap at someone
who has really done nothing wrong.
Or until we suffer a horrendous headache
that refuses to go away.
Whether or not we recognize we’re stressed,
our stresses will make themselves known,
one way or another.
That’s how stress works, in all of us.
Stress wants an avenue of expression and,
more than that, deserves an avenue of expression.
Even in the middle of an aisle
at the nearby grocery store.

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