Archive for the ‘Caregiving’ Category

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.

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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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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.

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Baggage

January 31, 2008

Abigail Thomas gave care
to her husband, Rich,
after an accident.
He was hospitalized
for many weeks.
The future was uncertain.
In “The Day the World Split Open,”
she explained one way that experience
helped change her life:
I seem to be leaving in the road behind me all sorts of unnecessary baggage, stuff too heavy to carry. Old fears are evaporating: the claustrophobia that crippled me for years is gone, vanished. I used to climb the thirteen flights to our apartment because I was terrified of being alone in the elevator. What if it got stuck? What if I never got out? Then there I was one Sunday morning in the hospital, Rich on the eighth floor, the elevator empty. What had for years terrified me now seemed ridiculously easy. I haven’t got time for this, I thought, and got right in.

The fact that we’ve become a caregiver,
whether willingly or unwillingly,
often changes how we approach life.
Like Abigail, we may find
we’ve been carrying baggage
that’s gotten too heavy to handle.
We don’t have the energy for it now.
We don’t have the time.
Moreover, the baggage we choose to drop
may be an unnecessary load,
one we’ve shouldered far too long.
I know a caregiver who chose
to set down her agoraphobia—
her fear of leaving familiar space—
when it got in the way of caring
for her ill daughter far from home.
I know a man who gave up
his chronic penchant for disorganization;
he needed a different way of managing his days
as the primary caregiver to his wife.
I know another man who,
when his mother needed his care,
dropped the burden of old wounds
he had been hanging on to for years.
He forgave her for having hurt him
and they spent her last days
in relative closeness.
It’s possible our caregiving can become
an opportunity for us to assess
the life situation we’re currently in,
the life choices we’ve previously made.
What’s really important to us in life,
given these new responsibilities?
What’s not important?
What has become a priority
that wasn’t one before?
What makes most sense
for how our days are lived out?
What no longer makes sense?
What would be most healing,
most life-giving,
not just for the one in our care,
but for ourselves?
Our caregiving may point us in directions
that surprise us,
even please us.

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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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Don’t forget

January 17, 2008

Sunday went well.
My sister Patty
took Dad to Muncie.
He lived, worked, and
raised his family there
for fifty years.
Sunday night something went wrong.
When he awakened Monday, he could not see.
He did not know forward from backward,
left from right.
Patty called me at my office, concerned.
After we talked,
she held the phone to Dad’s ear.
“I’m not feeling so good,” he whispered.
Then he said something to me
that he had never said before,
something that touched me:
“Jim, please don’t forget me.”

Two days later, Dad is doing better.
But as his mind slows and narrows,
as his physical needs become more basic,
so do his emotional needs.
Child-like almost, he gently requests,
“Please don’t forget me
over here in a different city.”
What he really means is
he’s in a whole different world now,
and he doesn’t want to be there,
to travel there, all by himself.
He wants to feel our presence,
emotionally if not physically,
in spirit if not in person.
He wants to know he is with us,
and we are with him.

I believe that’s what
those in our care steadily ask
at the most fundamental level:
“As you live your own life,
please don’t forget me.
As you step toward your distinct future,
please remember me and my future.
When you’re away,
sometimes think of me here.
When others have your attention,
please hold a small place in your mind
for me too.”
Seldom do our care partners
want to hold us back from life.
They do not want their unavoidable restrictions
to become ours.
They want simply not to be
left entirely behind, entirely alone.

Now, in dimming light,
our father makes a simple request,
and as he does so,
he speaks for people like him everywhere:
“Will you keep including me
with your mind,
in your heart,
next to your soul?”
That’s all.
That’s everything.

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A Place

January 14, 2008

Author Abigail Thomas
sat in a dog park
in New York City
when she wrote,
“This is the place
I try to make
sense of things, order them,
to tame what has happened.”
What had happened was her husband Rich
had been hit by a car,
suffering massive head injuries.
For weeks on end she shuffled back and forth
between their apartment and the hospital
where he lay, often unconscious,
and if he was conscious,
he was no longer his old self.
Her writing is entitled
“The Day the World Split Open.”
One way she dealt with that split-open world
was to find a place
where she could regularly sit.
There she would look around,
look within, and mull over—
in her words, “to tame what happened.”

I believe Abigail Thomas offers us
a wise and useful example.
I believe there is real value
in our having a place, as caregivers,
where we can spend time
pondering things, ordering things,
taming this experience of ours.
Our purpose in doing this is not at all
to run from our caregiving responsibilities,
but to find ways to assimilate
what has happened and is happening,
so we can rededicate ourselves to our work.
There is something about having
a particular place to do this
that gives this practice of ours its priority,
its day-to-day importance.
Abigail found a bench in a park.
Maybe we’ll seek out a soft chair
in a coffee shop,
or a wooden pew in a sanctuary,
or a weather-worn chair in the backyard.
Maybe we’ll walk a wooded path,
or jog a prescribed route,
or do some sort of handwork
in a room that feels just right.
Perhaps we’ll just find our way
to a favorite spot on earth
to watch and listen, or write,
or close our eyes in quiet reflection.
When we can claim such a place,
it steadily calls to us wherever we are.
It welcomes us at the right time.
Our place encourages us to do
what it is we need to do:
to make sense of our experience,
to order things,
to tame what has happened,
and what continues to happen.
May you know such a place.
And if you don’t have one yet,
may you find one.

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