Archive for August, 2007

Reluctant

August 10, 2007

Englishman Hugh Marriott
has written a delightful book
for family caregivers:
The Selfish Pig’s Guide to Caring.
He wrote it while being
the full-time caregiver
for his wife, Cathie,
who has Huntington’s Disease.
On the first page Hugh describes three kinds of caregivers:
those who cheerfully sacrifice time and freedom
to care for a loved one;
those who are paid to care;
and those who “have come reluctantly” to caregiving.
He says he wrote this book for the reluctant ones,
because he knows their situation—
he is one himself.

Why might someone, someone like us,
be reluctant to be a family caregiver?
Well, first of all, it can be a lot of work—
day in and day out in many cases,
not just for weeks but even years on end.
Our caregiving may require us to give up
what we would rather not give up,
including some of our life,
if not much of our life.
We may find ourselves living a life
we never planned for or wished for—
one that has been thrust upon us.
We may be forced to deal with many changes,
and one truth about human beings is that
we are hardwired to resist unwanted change.
On top of all this, we may experience reluctance
on behalf of the person in our care.
We may wish they weren’t going through
all they’re going through.
We may take no joy in how this caregiving situation
is altering the relationship between us,
perhaps taking on parental overtones.
We may regret losing closeness with friends
who don’t feel comfortable relating to us
as they once did.
What’s happening may impact our financial situation,
our living arrangements,
our larger family relationships,
the whole scope of our future.
In light of this list of circumstances, I ask:
“What family caregiver would not feel some reluctance?”
“Who would not wish that some or all of these changes
were not taking place?”
In fact, on any given day,
we may feel something even stronger.
We may be angry about all this.
We may hate what is happening.
We can experience such feelings
and still deeply love and conscientiously care for
this other person with whom we’re paired.
So I’d say it’s normal to come reluctantly to any prospect
of family caregiving that entails inconvenient changes
or has long-term consequences.
Even more, I’d say it’s a good sign,
showing that we have plenty we want to do in life
in addition to being a thoughtful caregiver.

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Make Do

August 8, 2007

Kathy calls me
her trashy neighbor.
That’s because I haul
her garbage cans
to the street most weeks.
For 23 years Kathy has had
a progressive degenerative joint disease.
She is in constant pain.
She walks with more difficulty than most.
She cannot climb stairs.
In recent years she was a primary caregiver
for her elderly parents who lived
in an apartment a few miles away—
a second-floor apartment.
This is how her visits would work:
Kathy would enter the building’s vestibule
where a stairway led up to her parents’ place.
Her mother would bring down two Cokes,
and the two of them would sit
on the bottom step and talk.
Sometimes Kathy’s father would converse briefly
from his wheelchair on the landing above.
That was how Kathy gave her care in person,
and how her parents received it in person.
She made do,
and so did they.

Sometimes our caregiving cannot go exactly as we wish.
Perhaps there are things we cannot physically do,
as in Kathy’s case.
Maybe something else creates unavoidable limits—
our other family responsibilities,
our need to produce an income,
our flagging emotional energy,
or our own health issues.
When that happens, ours is to decide how we’ll respond.
Will we redouble our efforts,
knowing that’s ultimately not a viable option?
Will we give ourselves to our guilt?
Or will we find a way to make do?
In this context, making do is not about settling for less.
It is about caring so much
that we do what we can,
given who we are,
given the situation we’re a part of,
and given the way the universe is made.
In the best of all possible worlds,
yes, we would do our caregiving differently.
But we have only this world,
this particular situation,
this body we’re in.
Like my friend Kathy,
our being willing to make do,
thoughtfully, resourcefully, lovingly
may be, in the end, just perfect.

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Layers

August 6, 2007

The biopsy was done
on a Friday morning.
The results were not
what we wanted to hear.
So surgery was performed
first thing Monday.
My wife Bernie spent
two nights in the hospital,
then I took her home and began my education
in how to be her caregiver.
Looking back, I believe we both managed pretty well.
It was difficult at times,
but we found our ways to give and receive care
with empathy, with honesty,
and occasionally with doses of laughter.
In addition to handling these new roles,
we needed to handle something else just as much—
our grief.
Bernie was grieving the loss of her breast,
the loss of her physical health,
and potentially the loss of life itself.
I was grieving too, for the same things,
from my perspective as her husband and lover.
So while I struggled to learn the ropes
of becoming my wife’s caregiver,
I also struggled on another level—
learning the ropes of dealing with particular feelings
of shock and grief, anxiety and fear.
For quite some time I felt disoriented.

When our initiation into the role of caregiving is sudden,
it’s a lot to deal with all by itself.
Often this sudden introduction is complicated
by what else is happening to us,
by what led us to this new role.
As a result, we may be sad and grieving, as I was.
We may be angry, if not furious,
at whoever or whatever caused this unfortunate situation
we’re now a part of.
We may feel abandoned and alone
or helpless and exposed.
We may feel all these things, and more.
When we’re grappling with powerful feelings
emerging from unwanted changes in our life,
while simultaneously grappling
with the new responsibilities of caregiving,
it can all seem quite daunting.
There are ways, of course, we can learn to deal
with what is before us.
Bernie and I did, as we lived
and learned and grew, all at the same time.
But whether we’re expecting it or not,
sometimes our caregiving has another layer to it—
a layer of independent feelings
that we dare not ignore.

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Our ABCs

August 3, 2007

Recently I came across
some ABCs about various subjects.
“Hmmm,” I thought.
“I think I know a subject
that deserves its own ABCs.”
So after a bit of reflection,
here they are:

Accept what is.
Be you.
Converse with someone
who understands.
Dare to ask for
what you need.
Embody patience.
Forgive mightily, including yourself.
Gather possibilities.
Hope unconditionally.
Include feelings unfailingly.
Juggle.
Kiss the joy as it appears.
Listen with eyes as well as ears.
Make time for yourself.
Name your blessings.
Open soul to soul.
Pamper yourself without apology.
Quicken your intention.
Rub elbows with nature.
Sing your song to the stars.
Touch, yes, do touch.
Unwind often and well.
Venerate the other, yourself, everyone.
Wake up to each moment.
eXpect serendipities.
Yield total control.
Zero in on the love.

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Overestimate

August 1, 2007

Katherine told me
the story of her parents.
Her father, Harold,
developed Alzheimer’s.
Her mother, Rachel,
in ill health herself,
had to place him in a nursing home.
The cost of his care began to deplete their savings.
It appeared the sale of their house was next.
An attorney advised Katherine’s family
that in order for Rachel to avoid destitution,
she would need to divorce her husband
after 60 years of marriage.
So Katherine sat before a judge,
representing her demented father,
while her mother sat across the courtroom,
petitioning for a divorce she didn’t want.
It was an act, Katherine said,
that broke her mother’s heart.
Not long after that sad day in court,
Rachel received a letter in the mail.
In part it read,
“Whatever the State of Indiana
says about the legal status of your marriage,
that’s not what matters.
You are still married in the eyes of God,
and you always be—
that’s what matters.
You two remain married deep in your hearts,
and that will never change.”
The letter came from Michael,
who was legally no longer a family member—
he and Katherine had divorced years before.
Michael lived in Boston, 1,000 miles away.
His act of caring involved writing
a few heartfelt words
on a single piece of stationery.
That expression of care carried Rachel
through her final years,
as she placed that note in her Bible,
and then read it many, many times
when she needed its comforting message.

What is the point of this story of Katherine
and Harold and Rachel and Michael?
We, any of us, can be caregivers,
whatever our relationship, legal or otherwise,
to the one who needs care.
We can provide significant care,
even from far away.
We can care for another
with simple, deeply felt acts
that may take only moments to perform.
A point of this story is that
when we offer an authentic act of care,
we never know how much of a difference
it will make,
or how long its effects will last,
or how many times it will continue
to lift, to hold, to help heal,
to help someone live on.

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