Archive for October, 2007

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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At Hand

October 24, 2007

LuAnn lives with her husband
in their small apartment.
Recently Bob was diagnosed
with a degenerative disease
that has no cure.
He doesn’t require much physical care now,
but that time is approaching.
Changes in Bob’s mental functioning, however,
make it difficult to leave him alone
for extended periods of time.
Their daily lives have taken a different form
than they ever anticipated.
I asked LuAnn how she was dealing
with all these changes.
“It’s been hard,” she said.
“I wonder what the future will bring.
Just thinking about that
can bring me to tears.
But an idea that keeps me going
is a quotation that I keep
on our refrigerator door:
Our grand business undoubtedly is,
not to see what lies dimly at a distance,
but to do what lies clearly at hand
.”

The Scottish essayist Thomas Carlyle
wrote those wise and comforting words.
Later in life he was a caregiver himself,
after his wife became an invalid
for several years before she died in 1866.
He would not have us think, certainly,
that we should stick our heads in the sand
and hide from the future.
But neither is our role to focus always and only
on where our particular situation
is unavoidably leading us.
When certain inevitabilities are beyond our control,
we will do well to pay attention
to what is within our control.
What decisions are ours to make today,
small as they might be?
What can we concentrate on
and handle right now,
just as these moments come to us?
How can we divide into manageable pieces
what seems so formidable to consider?
What can we give ourselves to here and now
that promises some satisfaction,
if not some sense of joy?
What can we find to be grateful for,
if we would take the time to look around us?
What can we be proud of,
if we’re going to be honest with the world?
What can we be at peace about,
no matter what’s standing before us?
These are no small matters at all.
They are our grand business.

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Chore

October 22, 2007

Over the weekend
I visited Dad
in his assisted care facility.
We went out to lunch,
did some shopping,
and talked a lot.
Later we sat outside in the autumn sun
and I clipped his long fingernails,
something he can no longer do for himself.
“Boy, my toenails need it too,” he said.
So we went inside
and he sat in his comfortable chair
while I sat on the floor before him.
I removed his shoes and socks
and held his soft 87-year-old feet gently
as I carefully trimmed those bent, thick nails,
wanting to be sure that I didn’t hurt him.
It took a while.
That evening, hearing about my day with Dad,
a friend asked, “Did you mind doing that?”
My response was immediate.
“No, I didn’t mind at all.
In fact, I found it very meaningful.
I rather loved it.”
I don’t know how Dad felt,
because he never said,
other than being appreciative.
But I know how I felt.
I felt useful,
able to do something that Dad needed.
I felt pleased,
that he would ask me, then allow me,
to do this personal act for him.
I felt tenderness for him and closeness to him
as I cradled and massaged his feet
and tended those stubborn nails.
I felt great respect for this man
who has shown such strength through his life,
and is now showing that strength in other ways.
“Someday I’ll miss not being able to do this anymore,”
I said to myself as I lingered
in my caregiving chore.
Except it wasn’t a chore at all.
It was a contented act of love.
Perhaps you know that experience too.

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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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Slowed Down

October 8, 2007

Martha Beck had two degrees
from Harvard University
and was ready for a third.
Then she and her husband
learned she had become
unexpectedly pregnant.
Next she learned her unborn child
had Down syndrome.
Ignoring the advice of Harvard colleagues,
Martha and John had the baby,
whom they named Adam.
In her book Expecting Adam, she writes,

“I was afraid Adam would slow me down, and he has. Not because he has required more care and time than a ‘normal’ boy, but because the immediacy and joy with which he lives his life makes rapacious achievement, Harvard-style, look a lot like quiet desperation. Adam has slowed me down to the point where I notice what is in front of me, its mystery and its beauty….”

Most of us do not enjoy being forced
to go slower than is our inclination.
That’s one of the reasons
caregiving can be frustrating—
the one in our care may operate
on a different internal clock
than the one we commonly use.
They may be limited physically
as to what they can do
and how quickly they can do it.
It’s possible their mental processes—
brought on by their disease or condition—
may be what slows them down
and therefore slows us down.
Whatever the cause,
Martha Beck wants us to consider a response
other than the customary one
(and very understandable one)
of impatience, of pushing to go faster.
Is it not possible that slowing down
has its benefits, its gifts?
If that is true, why not sample these?
Is it not possible that we might feel grateful—
at least a little, at least at times—
for what we then have the time
to see and hear, to touch and enjoy?
If that is true, what is stopping us?
Is it not possible that we might find ourselves
learning some things that our incessant busyness
may prevent us from learning?
If that is the case,
then will we open ourselves or not?
Can we not be willing to synchronize ourselves
with the one in our care,
rather than expecting them—
they who are our equals—
to move at the pace we dictate?

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Beyond Exhausted: The Stress Series III

October 5, 2007

Richard and I talked
over lunch last week.
His wife June was diagnosed
with multiple sclerosis
nineteen years ago.
She’s been bedfast since 1999.
They have been able to keep her at home
this whole time.
A full-time aide comes five days a week.
The rest of the time—
evenings, nights, weekends—
Richard is her hands-on caregiver.
Meals, massages, bodily care, nursing duties—
it’s all his to handle.
I asked him how the experience has gone.
“The first two years were very hard,” he said.
“I was exhausted and exasperated.
I raced from one thing to another—
from my work as a teacher
to my work as a caretaker,
back and forth, day after day.
I felt trapped between the two.
There were even days when I asked myself,
‘How can I get out of this?’
I’ve never felt such stress in all my life.”

We don’t need to document here
all the ways caregiving can cause stress.
We know it already, deep inside.
The question is this: what will we do about it?
We can, of course, become aware of our stress levels,
knowing that the various stressors
affect all of us differently.
We can be sure to own our stress levels,
whatever they happen to be,
clearly acknowledging them to ourselves,
and ideally also to someone we trust.
Then we can learn—
from others like us, from professionals,
from our reading, from deep inside,
from life itself—
what stands a good chance
of giving us some perspective,
some relief, some healing hope.
Finally, we can act on these learnings,
realizing we must take the lead ourselves.
We cannot expect others to solve this for us.
When opportunities for lessening the burden
do come from others,
we can accept these kind offers
with gratitude and with grace.

“What changed after the first two years?”
I asked Richard.
“I went to a therapist,” he replied.
“One session was all it took.
After she heard my story, she said,
‘You need a life that involves more
than just being your wife’s caregiver.’
She helped me release the guilt that had kept me
from ever doing anything for myself
because I felt so badly for June.
Ever since then I spend part of my days
taking care of June
and part of my days taking care of me.
I love June and I know she loves me
and we’ll make this work
just as long as we can.
We’re fortunate we’ve found a way.”

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Havoc: The Stress Series II

October 3, 2007

NPR commentator Tim Brookes
started to write a book
about the hospice movement.
Then he got a letter
from his mother in England—
she had terminal pancreatic cancer.
So Tim ended up doing a different book,
Signs of Life: A Memoir of Dying and Discovery.
As he writes about caring for his mother
during that emotional time of their lives,
he expresses what many of us already know:
such care can be stress-producing.
It can wreak havoc on our ability to concentrate,
to pay attention, to carry on normally in life.
He describes once nearly driving into the side
of an ambulance, even with its flashers on,
its siren blaring.
“I had no idea it was there,” he confesses.

Let’s be clear—
stress is not necessarily bad for us.
A limited amount of stress, in fact,
can make life interesting, even exciting.
But when the amount of stress we experience
is more than we bargained for,
when it feels out of control,
when it continues longer than we’d like,
then it’s likely not so good for us.
Unfortunately, our family caregiving
may easily become just that—
more than we bargained for,
going on longer than we wish.
Last month a research project by Ohio State University
and the National Institute on Aging
confirmed what many of us have sensed:
the attendant stresses of extended caregiving
can negatively affect one’s physical health.
Researchers first studied the mothers
of chronically ill children.
Now they’ve studied spouses and children
who care for family members with Alzheimer’s.
Results were the same—often a pattern
of changes in the caregivers’ chromosomes
that influenced how their bodies aged.
No further documentation is needed,
so now they’re studying how to control
or reverse this effect.
In the meantime, it’s important for us to be aware:
too much caregiver stress is not good for us.
And if it’s not good for us,
neither is it good for the one in our care.
We’re too closely linked for that to be otherwise.

As the composer of “The Thoughtful Caregiver,”
I hesitated to write about this study.
Family caregivers don’t need something additional
to worry about, to stew over.
Yet I believe this study’s results are important enough
that they need to be shared.
In other posts I’ll be writing about what we can do
to ameliorate the effects of such stress.
I’d love to hear your ideas too.
Mostly I’d begin with this encouragement:
let’s monitor our levels of stress.
That’s a beginning step we can take.

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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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