Archive for July, 2007

Different

July 11, 2007

The photo is 30 years old.
My two brothers and I
pose with our father
at the family lake cottage.
We’re all wearing almost identical
navy blue swim trunks.
(Our sister is not in the picture;
she must have forgotten to bring her trunks.)
We all still go to the place at the lake,
but Dad’s visits last only a few hours.
Walking is now hard for him;
his sense of balance is compromised;
his mind increasingly plays tricks on him.
When I was there with him last week,
he didn’t realize it was his own home.
Tony, Mike, and I, like Patty, are his caregivers now.
Tony, second from the right, lives nearby and stops in for short visits
at Dad’s assisted care facility.
Mike, on the far right, and I live farther away
and must plan our visits.
The three of us are alike, and yet so different.
One of us cajoles Dad when together,
one jokes with him a lot,
and one tends to be more serious
(except when he’s writing about sisters and swim trunks).
One of us creates entire gourmet meals for Dad,
one cooks with Marie Callender and her frozen delights,
and one carries on in style while his wife cooks up a storm.
One handles all Dad’s finances,
while the other two keep the vacant homeplace shipshape.
One or two are prone to hover over Dad;
one or two keep the boundaries more clear.
One shares his business owner mentality,
one is the effective salesman through and through,
and one cannot escape his professional caregiver roots.
We’re all three different,
we all three love Dad equally,
and we all relate to him uniquely as caregivers.
No one of us provides better care;
we each offer our characteristic way of caring.

What’s true of Herman’s boys is true of all caregivers everywhere.
However much we’re alike,
we each caregive in our own distinctive ways.
All of us.

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Helplessness

July 9, 2007

Political commentator Morton Kondracke
has written a moving book
called Saving Milly.
Milly is his wife of many years.
In 1988, at the age of 47,
she developed Parkinson’s disease.
Over time she had to give up her psychotherapy practice,
then her ability to walk,
and later her ability to speak.
Morton juggled his work schedule so he could physically care for her
a number of hours each day.
He wrote in the introduction to his memoir,
“Parkinson’s disease has kidnapped my wife.
She is being carried into an abyss,
and I am helpless to rescue her.”

The caregiving situations to which some of us are called
may bear some similarity to that of Morton and Milly.
A terrible disease kidnaps and ravages the body or mind
of someone we love,
someone who doesn’t deserve this.
Or an awful accident destroys any hope of a normal life
from that point forward.
The one in our care is helpless to reverse what has happened,
what continues to happen.
And while our situation as their caregiver is much different,
we also experience helplessness firsthand.
We cannot undo what has been done.
We cannot take away the other’s pain.
We cannot make everything right.
Indeed, a certain helplessness is a part of all caregiving,
including those situations that are
noticeably less overwhelming, less tragic.
As caregivers, much lies beyond our control.
Once we realize that,
then we are free to move toward finding ways to accept this reality,
to begin making our peace with it.
Ours is to acknowledge what we cannot do in this situation,
while staying clear about what we can do—
for the other, for ourselves, and even for the world at large.

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Amateur

July 6, 2007

The man was 70 or so.
He and his wife lived
in a modern home
overlooking the Pacific Ocean.
She was bedfast, dying of cancer.
He and I spoke as a hospice nurse made her visit.
I learned he provided
around-the-clock care for his wife,
without any family nearby,
with only limited support from others.
As we talked, I validated all he was doing in this tiring role,
a role that had begun a year before.
“Oh, I’m not a real caregiver,” he said.
“I’m just an amateur.”

Whether or not these exact words are used,
many, maybe most, family caregivers feel as if
we’re hardly more than amateurs.
“I have no training for this work,” we may say,
“so I’m not truly qualified to be considered a real caregiver.”
Our feelings may be strengthened
when someone with a specialized degree sends us this message,
perhaps even unintentionally:
“I am a professional caregiver,
therefore I am the one in the know.”
I believe it’s worth reminding family and volunteer caregivers
what the word “amateur” has always stood for.
It’s made up of two Latin words that mean “one who loves.”
Caregivers like us are those who do this work not for pay but for love.
We amateurs often invest a larger portion of our days in this work
than do those who are regarded as the professionals—
evenings as well as daytimes,
weekends and holidays without fail.
Our immersion in what we do enables us to see and hear
what those who are less immersed in our own situation may not.
Consequently, we can gain an understanding of the one in our care
that these others may lack the opportunity to gain.
And, of course, we bring a strong emotional connection,
deeper even that those truly committed professionals,
that is at the center of all true caregiving,
as well as at the center of all true healing.

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Gratitude

July 4, 2007

My wife Bernie and I
were speaking about the time
she was undergoing chemotherapy.
It’s interesting what she remembered
about my caregiving.
It was mostly the little things.
My bringing a table into the bedroom
so she could look upon all her bouquets.
My borrowing a laptop so she could journal in bed.
My washing her during those first baths
that were so hard for both of us.
Then she said, “I imagine you did a lot I never saw
because I was so consumed with the cancer,
with my treatments.
I probably wasn’t as grateful as I could have been.”

It’s gratifying and affirming when our work as caregivers
is acknowledged and appreciated.
In the best of all possible worlds, that happens regularly.
But times of illness and incapacitation are not
the best of all possible worlds.
Those who receive our care may be depleted or weak,
discouraged or depressed,
anxious or frightened,
embittered or angry.
Their pain, whether it’s physical, mental, or spiritual,
may narrow the scope of their world
as well as their ability to respond to us and others.
Reality is that those in our care have their own work to do,
and we caregivers have the work that is ours to do,
and we are all called upon to do what is distinctively our own
with whatever determination, strength, and insight
we can muster.
Sometimes gratitude comes back to us;
sometimes it does not.
But that’s not what matters in the end.
What really matters is that healing care is humanly offered
and care that is healing is humanly received.

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With

July 2, 2007

In her book Being with Rachel,
Karen Brennan writes about caring
for her 25-year-old daughter
following a motorcycle accident.
For a long time
Rachel was comatose,
making communication impossible.
Only trained therapists could handle her physical care.
Consequently, as both a mother and a caregiver,
Karen felt nearly helpless.
One day she watched a video of psychologist Ram Dass
speaking to caregivers of those with AIDS.
He advised these caregivers to simply be with the other person,
saying that was more important than anything.
Karen followed his advice,
situating herself often by her daughter’s side,
just being there as fully as she could,
even if she was not equipped to provide much hands-on care.
This act played a significant role in her daughter’s healing,
and in her own healing as a frightened, concerned mother.

It is hard to overestimate the value
of being completely and openly present
to that person with whom we’re paired
when we’re serving in a caregiving role.
Wherever that other person is,
we’re there.
Whatever they feel,
we stay present to them.
However long the journey,
we remain beside them.
Wherever the journey leads,
we accompany just as far as we can.

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