Archive for November, 2007

Both

November 30, 2007

The tireless caregiver,
that’s what Martha was.
She was always working,
always moving.
Her hands and feet,
let alone her mind,
seldom slowed.
Mary, her sister, took a different approach.
She sat with her body stilled,
her mind quieted.
She listened with her whole being.
As we might expect, Martha got perturbed—
“Mary ought to be lending a hand!”
First Martha stewed about it,
then she spewed.
Her sister kept concentrating on what
the man before both of them
wanted to share.

This story is a classic,
recorded first in the Gospel of Luke.
The man in the story is Jesus.
As the tale has come to us,
he has a few words to say to Martha.
In a very understanding manner,
he tells her she comes across
as awfully anxious, awfully burdened,
with all her scurrying about.
She’s both distracted and distracting.
Her sister, on the other hand,
is single-mindedly quiet,
concentrating, absorbing,
working to understand.
Mary has chosen to do a very good work,
different as it is.

Technically, this is not a caregiver story.
While a kind of care was being shown that day,
that wasn’t the real issue
behind this human event.
The issue was how these two people—
sisters in flesh, sisters in spirit—
related to the man in their midst.
One bustled around,
trying to make everything just right,
all the while grousing inwardly
about all the work she “had” to do.
The other settled herself,
all eyes and ears,
all heart and soul,
and became both present and attuned.
One displayed a kind of caring.
The other breathed a kind of caring.

Why do I retell this story today?
Not because it is a religious one,
but because it is a human one,
a universal one.
I believe there is a Martha and a Mary
inside virtually all caregivers.
The Martha in us is primed for action,
ready to roll up the sleeves
and start swinging those arms.
If we’re vulnerably honest,
our Martha is also usually invested
in making sure we’re seen in this way.
So a little huffing and puffing
and a random louder-than-normal sigh
can help bring our point home.
The Mary in us somehow knows
that truly effective caring can happen
when we’re doing seemingly nothing,
or at least very little.
We’re sitting, taking in, communing.
We’re not trying to demonstrate caring;
we’re simply inhaling it and exhaling it
so it begins to fill the space we’re in.

I believe that within all of us as caregivers
there is a valid place for our Martha—
our aware and discerning Martha,
as well as a place for our Mary—
our purposeful and committed Mary.
As thoughtful caregivers,
we’re not one or the other—
we’re both.
Moreover, our partners in care know that too,
and are grateful for it.

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Good Life

November 28, 2007

Novelist Helen Schulman’s father
required significant caregiving
for the ten years
before he died.
He had many acute illnesses,
ending up nearly paralyzed.
It was very hard on everyone involved.
In the first chapter of a new anthology,
An Uncertain Inheritance:
Writers on Caring for Family,
Ms. Schulman tells of her brother asking,
as he ended a visit to their father,
“What can I do for you, Dad?”
The old man, a former physician,
bedfast and terribly uncomfortable, said,
“Have a good life.”

What a remarkable response!
What can I do for you, Dad?
How can I help you, Mom?
What will assist, my Dear One so ill?
And the words come back to us,
“This is what will help me:
please have a good life.”
That’s not what we expect to hear,
yet it’s such a freeing reply.
“It will do me good to know
that you’re making sure your life
is going just as well as it can.”
I believe that, deep inside,
that’s what almost all care receivers want—
they want their caregivers to live fully,
to know happiness,
to experience fulfillment.
The earmarks of such a life
will be different for each of us.
Within our routines as caregivers,
and especially beyond those roles,
we have questions to ask ourselves
as we take seriously the other’s desire—
and our own desire—
that we have a good life.
What does bring us genuine happiness,
and what are the ways we can encourage that,
here and now?
What does give our days meaning,
and how can we make sure
we savor that meaning, and preserve it?
Where, and how,
do we experience beauty in our days,
and can we find it more consistently,
if not more often?
How do we fulfill that God-given potential
that is uniquely ours and no one else’s?
Truly, how do we live a good life
while honoring all those around us,
especially the one in our care?
I believe it is our responsibility
as thoughtful caregivers
to live our way lovingly
into all those answers.

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Regretfully

November 26, 2007

My caregiving responsibilities expanded unexpectedly
in recent days.
I regret that I do not have the time
to prepare and offer a new post today.
Wednesday for sure.
In the meantime, just this thought:

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Thankful

November 21, 2007

I write these words
the day before Thanksgiving.
Later today I’ll drive
to Warsaw, Indiana
and pick up my father.
He’ll stay with us
for three days.
He wants to be among family this holiday
but he’s also a little fearful.
Physically and mentally
he’s much more compromised
than he was last year this time.
He’ll require—
and he’ll accept with grace—
a lot of assistance.
He won’t talk very much.
He’ll lie in bed several times.
It will be a different holiday for us.

I lived most of my life
without thinking what Dad’s last years,
what his last Thanksgivings,
would be like.
I suppose I thought there would not be
all that much change.
And for a long time there wasn’t.
Until quite recently,
my father has been strong and able,
like I’ve always known him to be.
So there is a certain pain and grief
in witnessing what is now occurring—
for him, for me, for our whole family.

Ted Bowman in a current issue
of the journal Illness, Crisis, and Loss
uses a metaphor to describe the experience
of ending up in a place where
you didn’t expect to end up.
He quotes a mother who gave birth unexpectedly
to a child with Down’s syndrome.
It’s like getting on a plane, she reported,
bound for Italy, and once you land,
you find yourself in Holland.
You’re easily shocked and saddened
by this seeming mix-up.
Then Bowman quotes this insight:
If you spend your life mourning the fact that you didn’t get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

Dad and I have landed in our own
internal version of Holland.
We didn’t quite anticipate this destination.
We’re not seeing what we thought
we’d be seeing about now.
And yet…and yet…
as we explore these new surroundings,
there are some very special,
very lovely things to experience.
This Thanksgiving I find satisfaction,
even a quiet joy,
in caring for my father’s numerous,
sometimes almost child-like, physical needs.
I have come to feel grateful
that he and I can sit in long silence,
watching the lake, admiring the trees,
attending the ways of the hummingbirds,
without the encumbrance of words.
I enjoy these days watching him take
such pure pleasure in his chocolates,
such simple comfort in his bananas.
I now feel blessed that,
when I end a telephone conversation
by saying, “I love you, Dad,”
he says, “I love you too, Jim”
with a conviction and affection in his voice
that I have never heard before now.
This place we’ve landed—
it’s really quite lovely.

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Help: The Depression Series III

November 19, 2007

Joy has been caring
for her widowed father
for over twelve years.
He became a paraplegic
when routine spinal surgery
went awry.
Joy and her father always agreed:
he would be cared for at home
until it became physically impossible.
But even with paid nurses and therapists
coming five and six days a week,
many hours a day,
the unrelenting responsibility got to Joy.
Normally an upbeat person,
she became increasingly depressed.
After listening to her story,
I referred her to a psychologist I trust.
That was three years ago.
She caught up with me recently.
Her bubbly spirit had returned.
“That doctor helped me so much,” she said.
“I feel like I’ve got my life back.”

Repeated studies document that family caregivers
are much more likely to be depressed
than the population at large.
When we sense that might be happening to us,
what can we do?
Many possibilities exist,
which we’ll address in coming entries.
But an important first step is this:
we can seek professional advice.
Our family physician is a good start.
She or he can help assess what is going on.
Is this truly a depression
or might it be something else—
a physical ailment, for example?
This person can refer us to a social worker,
a psychologist, or a psychiatrist.
It’s important that we feel comfortable
with whomever we decide to see.
If the chemistry just isn’t right,
we can exercise our human freedom
and try a different professional.
If we’re employed,
an EAP or employee assistance program
might be an appropriate solution.
Our local mental health association can help.
The appearance of depression is not a sign
that we’re weak
or that we’re somehow broken.
It’s a sign that our responsibilities are huge,
and we all have our human limits.
Sometimes our life becomes decidedly off-balance
and we’re missing our former resilience.
When that happens, let us remember
there are people around us
who have been trained to help
and are ready to help.
Just as we give care to another,
they can give their specialized care
to another as well—to us.

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Carried

November 16, 2007

Bernie was in chemotherapy
for her breast cancer.
Our lives were laden
with anxiety and fear.
As her caregiver,
I often felt lonely.
Our children were away at school.
Friends were supportive, but in the end
this was our journey to make, not theirs.
Also, my young business was struggling,
compounding my disquiet.
I remember that spring evening well.
My wife was lying in our bed,
ill from that day’s treatment.
I could not leave her,
nor did I want to leave her,
but I was tired of being stuck inside.
So I opened wide the windows
to hear Bernie if she called
and stepped into our backyard.
I stood there alone, feeling sad—
sad for Bernie and for our lives,
sad also about needing to be a caregiver.
In honesty, I was feeling something in addition—
I was pitying myself.
I don’t like to admit that, but it’s true.
Head down, shoulders slumped,
I stood in our lawn
and felt sorry for myself.
Then two things happened.
I slowly lifted my head
and before me was the sky—
an amazing quilt of cottony clouds,
radiant with reds and pinks and blues.
In the next instant
a quotation I had recently memorized
came at me and pierced me at my core.
Sometimes I go about pitying myself
and all the time my soul is being carried
on great winds across the sky.

It’s from the Ojibway Indians,
known to us also as the Chippewas.
In the evening stillness
I was stabbed with that spiritual truth
in a way I have not forgotten.
True, life was not going as I wished,
but had I been left entirely alone,
entirely on my own?
No, I had not.
True, I held fears and anxieties,
but were those all I held?
No, for I still carried fervent hopes,
and equally fervent dreams.
I still carried love
and I felt carried by love.
In that deepening dusk
I could not see what lay ahead
but was such mystery so bad, so wrong?
For could it not also touch a larger mystery,
including the largest Mystery of all?
And while I was busy pitying myself,
was I not being held by something
much larger than myself,
whether or not I had accepted that
moments before,
whether or not I had the words
to describe it at all?
I spent many evenings that spring and summer
photographing the swirling clouds
from our backyard.
I still remember the message those vibrant skies
sent me again and again
as I lived my way into my new work
as Bernie’s caregiver.
I hope you are finding your messages too,
helping you know that your soul is always,
always being carried on great winds
across the even greater sky.

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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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Variations: The Depression Series II

November 12, 2007

Brendan Halpin has written
about caring for Kirsten,
his wife with cancer.
It was a hard time.
While joy did not
completely abandon him,
he often had “the downs.”
Much of the time, however,
he felt something different:
[This experience] has really long flat stretches. Not up, not down—just flat. Some days I feel like I’m about to cry all day, but most days I just feel numb. I guess that is really a down in disguise.

Not all caregivers experience “the downs,”
but those that do experience them variously.
Some feel a low-level sadness
that builds gradually
and goes on for months.
Others have a sudden, negative change in outlook;
they become painfully despairing.
For still others, like Brendan,
life simply becomes very “flat”
without much interest or feeling.
Any of these experiences can be
an expression of depression.
Its common signs are varied;
they may, in fact, take opposite forms.
Depressed people often feel constantly tired,
and act lethargic,
although some become workaholics.
The depressed may have trouble sleeping,
or awaken without feeling refreshed.
Alternately, they may sleep more than usual.
They may show significant change in appetite—
eating less or eating much more—
and show a consequent change in weight.
Events that used to give pleasure
no longer do so.
The depressed often experience
a loss of self-esteem.
Life may begin to appear hopeless;
they may begin to feel helpless.
Uncharacteristic behaviors may appear,
like sudden outbreaks of anger.
Serious depression may lead
to thoughts of death or suicide.
Obviously, caregiver depression
needs to be taken seriously.
It presents obstacles not just for our health,
but for the well-being of whoever
is in our care.
The National Mental Health Association
has a confidential depression screening checklist
that can help us identify the appearance of depression
and help gauge its possible severity.
I filled it out today;
it took less than two minutes.
It can be found at
http://depression-screening.org.
The more we’re honest with ourselves,
the better we can deal with
whatever we have to face.
It’s important for us to remember
that whatever our feelings these days,
they need not determine what life
will be like for us in the future.

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