Archive for January, 2008


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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Being Given To

January 28, 2008

Janet’s breast cancer
was in remission.
Then in 1998 it returned.
Her partner, Stan Black,
cared for her faithfully,
though tentatively.
He had never been a caregiver before.
He wrote about his experiences
in “The Elephant in the Room”
in the book An Uncertain Inheritance.
Stan includes what I believe
is a common, supportive truth
for many caregivers.
I learned to be both tender and strong. And when, as her condition worsened, I weakened, I also found I could recover. I now believe that a loving partner can help you find strengths within you that you didn’t know were there before.
When things got really bad, Janet continued to give me trust that allowed me to help her; she even, I felt, showed me the way.

As caregivers, we may concentrate
so much on our role
that we don’t realize or acknowledge
all our care partners do to help.
That other person may show us trust,
as Janet did Stan,
allowing us to do what we do
more comfortably and naturally.
They may show belief in us,
encouraging our belief in ourselves.
The one in our care may offer
gentle guidance to help our caregiving be
both effective and appropriate.
They may offer their understanding
or confer their forgiveness
when we fall short.
Their cheer may lift it.
Their hope may buoy our own.
In being honestly who they are,
they may help free us to be
honestly who we are.
We dare not demand any of this,
or even expect it, of them.
But when they help us find strengths
we didn’t know we had,
we can at least let them know.
And we can make sure we say “thank you.”

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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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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,

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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January 10, 2008

Our father, almost 88,
has been rather ill
this past week.
Contagion is an issue
so the facility’s staff
discouraged our visits.
We four siblings have been unsure—
what should we do?
Hospitalize Dad?
Get him to a doctor,
even weak as he is?
Let the illness run its course?
Arrange physical therapy
to help rebuild his strength?
Patty, Tony, Mike, and I shared our thoughts
in circling succession of emails.
Mike reminded us of the difficulties involved
with the last doctor appointment.
Patty weighed in about physical therapy—
regulations, restrictions, availability.
Back and forth we communicated
until a plan of action became clear.
Together we now know what to do.
Our collective wisdom is better
than our individual ponderings.

The Roman playwright Titus Plautus
had it right:
“No one is wise by oneself.”
However much we know as caregivers,
there is much we do not know,
much we cannot know.
However perceptive we are,
there are always things
we do not see.
Moreover, we’ll probably not see
how much we’re not seeing.
However clear our thinking,
another’s perspective can help—
help clarify,
help confirm,
help correct.
We caregivers are not wise
entirely by ourselves.
Who can help increase that wisdom?
Family, friends, colleagues.
Healthcare professionals.
Fellow caregivers.
Sometimes complete strangers.
And we dare not forget
perhaps the best source of all—
those who are in our care.
They may well be the most knowing
of everyone.

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January 9, 2008

Last spring, after coming up with the idea of creating The Thoughtful Caregiver on the web, I decided I’d do new writings and photographs every Monday, Wednesday, and Friday. It’s been an interesting and enjoyable experience carrying out those plans. I’m glad I started this venture and I intend to keep it going.
Three learnings, however, are encouraging me to re-evaluate this self-imposed schedule as the new year begins.
First, planning, researching, and executing these writings along with the accompanying photography has come to require more of my time than I initially anticipated. Each entry takes several hours. “Three entries” multiplied by “several hours” equals “a healthy chunk of one’s week.”
Second, I’ve been a little surprised how many weeks of the year, when you get right down to it, have Mondays, Wednesdays, and Fridays in them. Quite a few, I’ve noticed. It makes for a steady stream of deadlines.
Third, while I’m grateful that there are those of you who find meaning in reading The Thoughtful Caregiver regularly, I’m also aware that readership is fairly limited, even after hundreds of personal contacts and many thousands of mailings. There are times when the result of one’s work needs to be evaluated against the amount of labor involved.
For these reasons, I’ve decided that I’ll go from three to two writings a week. Mondays and Thursdays will be the days.
I’ll continue to do my best to make Thoughtful a meaningful unfolding of ideas and images. Please let me know if you have any suggestions for how this work might develop in the future. Your feedback is very valuable to me.