Archive for June, 2007

Distance

June 29, 2007

Patty is my sister,
six years younger.
She is a natural caregiver,
wonderfully so.
She was so during our mother’s long illness.
She is so now with our failing father.
Unlike the three brothers
who live a manageable drive away,
Patty’s drive is 1219 miles to the homeplace.
This is what I have heard her say:
“I regret missing out on the day-to-day details.”
“I feel guilty I am not there to help more.”
“I feel unworthy to make decisions about Dad’s care
because I am not the one who must implement those decisions.”

Undoubtedly, long distance caregiving has a unique character.
Everyday particulars go missing.
Eyes cannot easily verify.
Fingers cannot soothingly touch.
Arms and hands cannot lift and pour and wash and comb.
And yet…
And yet, vocal and written communication can still be clear and close
and quite engaging.
Many caregiving responsibilities can still be handled,
even from a distance,
and if not personally managed, then at least lovingly overseen.
The distance itself can foster creative ways of being together
that someone who is right next door might never consider.
And when there are opportunities to be together physically,
these times can have a special quality that’s remembered long after.
Then the miles between have nothing to do
with whether or not the bond remains strong,
whether or not the relationship grows and deepens,
whether or not the love keeps flowing back and forth.

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Miracles

June 27, 2007

Sidney Winawer, M.D. specializes
in gastrointestinal cancers
at Sloan-Kettering Cancer Center.
His book Healing Lessons is the story
of his wife Andrea developing
a carcinoma of the stomach.
When traditional treatments proved ineffective,
she sought out alternative therapies
with varying degrees of success.
As a physician he resisted this course of action,
but as her husband and caregiver
he came to support her efforts
as she explored all possibilities for healing.
Together they boldly hoped and vocally prayed
for a remission from cancer,
while pursuing those non-traditional treatments
that seemed to hold promise.
He concluded the book’s introduction in this way:
“[T]he miracle you hope for
is not always the miracle you receive.”

In some of our cases,
we caregivers and those in our care
are hoping for miracles.
The odds are against us,
but we are not giving up.
The possibilities may be limited,
but they are not nonexistent.
Even if others don’t understand our persistence,
we hold unshakably unto hope.
Miracles are possible—we never doubt that.
For Andrea and Sidney,
the miracle they sought did not come to be.
But that does not mean
that a miracle did not happen.
As he writes near the end of his book,
their love was transformed by their experience.
They became closer than they imagined possible.
They learned to live life to the very fullest,
and with a new-found zest.
She became more independent,
more her own person.
He became much different as a doctor,
more open and caring.
A miracle happened to them,
even if it was not the one they hoped for.
The same can be true for any of us,
caregivers and care receivers alike.
Miracles do happen.

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Bold

June 25, 2007

My friend Paul Johnson works
at a hospice in Minnesota.
He is also the primary caregiver
for his wife, Barb.
Her brain tumor and subsequent surgeries
have left her with stroke-like symptoms.
He cannot leave her by herself.
Laundry, cooking, cleaning, shopping—
it’s all his now to do.
“I’ve learned that people do want to be helpful,” he told me.
“But what they think will be most helpful to me
is not necessarily what is most helpful to me.”
People in his church, for example,
volunteered to bring in meals regularly,
and Paul is appreciative of their kindness.
But Paul enjoys cooking and he’s good at it.
What he needs more than food is time—
time to run errands, to exercise at the Y,
to attend evening meetings.
What would be most helpful would be for people to stay with Barb
and converse with her while he is out of the house.
“I’m learning to be more bold,” he said,
“about asking for what I really need.
It’s not easy for me to do, but I’m getting better at it.”

Sometimes people really do know what would help us most;
their offers are sensitive and timely, exactly what we need.
Other times people intend well but they don’t quite understand
what life is like for us—the stresses, the difficulties, the handicaps.
Believing their desire to help is sincere,
we can facilitate both their willingness and our own readiness
by communciating what is true for us:
“Thank you for your kind offer.
Right now, however, I have a greater need.
May I tell you about it?”
Our honesty can lead the other person to feel fulfilled,
knowing they’re doing what’s clearly helpful for us.
Such honesty can also ease our load as caregivers,
giving us a bit of a lift.

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Not Alone

June 20, 2007

On any given day,
more than 25% of all Americans
provide care for a chronically ill,
disabled, or elderly family member
or friend.
That’s 50 million caregivers!
Over 60% work outside the home.
Almost one in five family caregivers
gives 40 or more hours of care a week.
The majority are women,
but the number of men is increasing,
rising to over 40% of the total.
One-third of the caregivers of older people
are themselves over 65.
1.4 million children under the age of 18
provide daily care for an adult relative.

Sometimes it’s easy for us caregivers
to feel as if few others are going through
what we’re going through.
We cannot see inside all the homes
where we live to know which ones
shelter active caregiving.
Because of the nature of family caregiving,
such people may not be often seen
in restaurants, stores, and theaters,
nor do they regularly appear
enjoying the out of doors.
In many cases the illness or incapacitation
limits what’s possible, not just
for the one receiving care
but for the one providing care.
Caregivers’ lives are seldom written about,
seldom portrayed in the media,
seldom highlighted or validated
in any significant public way.
Yet the truth is there are many of us,
even if we cannot see or know one another.
Even if we feel isolated
as we go about our days as caregivers,
it’s important to know
that we are not all by ourselves.
There are others like us, many others.

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Paying Debts

June 5, 2007

I am a caregiver,
along with my siblings,
for our 87-year-old father.
He can no longer shower or dress
without assistance.
He needs help handling his money, his pills,
and his grandchildren’s names.
I sometimes find myself providing various sorts of very personal care
that I never imagined I’d be providing as his son.
Dad says he’s sorry he requires so much of our time (and he is),
yet he continually asks for more and more of it,
requiring many trips to the assisted living facility
where he lives in another town.
With so much else going on in my life,
this constant care sometimes feels like an imposition, a burden.
Then I remember Benjamin Franklin’s humbling words:
“When I am employed in serving others,
I do not look upon myself as conferring favors but paying debts.”
My father would not want me to feel indebted,
yet the truth is that he cared for me
when I could not care for myself,
when my own needs were constant.
As I grew older, I knew I could count on his steadiness,
his kindness, and his own brand of gentle, quiet love.
Time after time in my life, he was there, solidly there.

Whoever we are as caregivers,
we cannot be who we are today,
nor can we do what we do today,
if someone had not cared for us in the past,
if someone had not shown us the way.
Maybe it was a parent or grandparent, an aunt or uncle,
or the parent on one of our friends.
Maybe it was a neighbor, a teacher or a minister.
Maybe it was the very person who is being cared for right now.
The caring we provide today does not originate with us.
We have something to give because we have been given to.
We are able to share because someone first shared with us.

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More Than Managing

June 5, 2007

Renowned professor and author C. S. Lewis
was a satisfied bachelor when he met
the spirited poet Joy Gresham.
Their unlikely relationship grew first
into marriage and then into romance.
Unfortunately, she soon developed terminal cancer
and C. S. Lewis committed himself to care for her.
As their story unfolds in the movie Shadowlands,
he doesn’t want to talk about her illness and approaching death.
Joy says to him, “I’m going to die,
and I want to be there with you then, too.
The only way I can do that is
if I am able to talk to you about it now.”
He responds, “I’ll manage somehow. Don’t worry about me.”
She replies, “I think it can be better than that.
I think it can be better than just managing.”

Her words hold significant truth for us.
Even in the most difficult circumstances,
caregiving can be about much more than just managing.
Relationships can grow and deepen.
People can become more real to one another, more honest.
New strengths can emerge.
Unexpected joy can appear.
Unusual peace can settle in.
Moments can be lived more fully than ever.
Does that happen automatically?
Of course not.
But with our desire and willingness,
and sometimes even without it,
such things can happen.

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A Way to Be Close

June 5, 2007

When my wife Bernie
was undergoing regular chemotherapy,
there was one repeating experience
I did not like.
I would sit beside her
in the oncologist’s office
while the nurse slowly injected
those toxic, life-saving chemicals.
Then I would help her to the car and we would head quickly home.
I drove faster than normal because we knew
her nausea would begin within the hour.
At the end of that trip across town lay what I disliked.
Bernie would climb into bed
and there she would lie very still
for the better part of two or three days.
She wouldn’t want to talk,
nor would she want to be touched or massaged,
nor would she even want me in the same room with her,
except briefly.
She wanted to be left alone.
She needed to be left alone.
So as her caregiver that’s what I needed to do,
even though it felt terribly lonely,
even though I experienced such helplessness
as I paused there in the doorway periodically,
listening, watching, caring deeply.
I came to realize that letting her alone at those times
was the most loving action I could take.
Letting her lie, and sometimes moan, by herself
was one way I could offer my love.
It was a hard lesson for me,
but a very important lesson.
It is a lesson that all of us who call ourselves caregivers
will do well to take in,
much as we wish we didn’t have to.

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Our Best

June 4, 2007

Susanna’s chronically ill mother
lives alone in an assisted-living
apartment six states away.
The devoted daughter travels regularly,
at significant expense,
to spend extended periods with her mom.
She telephones daily.
She finds many occasions to send thoughtful gifts.
She stays in touch with those who oversee
her mother’s daily needs.
For all she does, however, she feels guilty she’s not doing more.
She admits, “I know I cannot expect my husband and teenage children
to move 1,000 miles so I can be closer to her,
and my mother will not move here.
Still, I feel like I am not there enough for her.”

Often that’s the family caregiver’s lament:
“Even though I am doing the best I can,
the best I know how,
it doesn’t seem good enough to me.”
There is no objective way to measure “best” in caregiving.
What’s right for a caregiver who lives next door is not the same
as what’s right for a long-distance caregiver.
The best caregiving one can provide
as a single parent with three small children
will be different from someone with fewer responsibilities.
One sibling may be best at relating emotionally as a caregiver,
while another may be best handling those everyday chores
that often go unnoticed yet make such a difference.
So we as caregivers will do well to assess honestly
what we can realistically expect of ourselves,
and then, as well as we can, do that.
No one can handle everything.
No one can do the various parts of caregiving equally well.
We all have our limits.
We all have our “bests.”

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