Archive for the ‘Caregiving & Feelings’ Category

Funny

September 24, 2007

In The Stuff of Life
Karen Karbo tells the story
of being the caregiver
for her dying father.
His home is in Nevada,
while she lives in Oregon
with her husband and children.
She must fly back and forth a lot,
and flying makes her anxious.
These trips also create a financial hardship.
As her father worsens and the anxiety builds,
another stress is added:
their beloved pet, a dog named Nubie,
becomes ill and must be euthenized.
To get their minds off all the sadness,
their family decides to go to a movie,
a comedy.
“We laugh so hard,” Karen writes,
“we can’t hear half of it.”
When the movie is over,
she asks the usher, an older man,
if they might watch it again.
“We’ve just put our family dog to sleep,”
she says in hopes of persuading him.
Kindly, he gives them permission.
Karen writes,
“He knew what I was just figuring out:
that you could have a dying father and a dead dog,
you could pretty much have misery all around you,
but it was still possible
to shriek with laughter.”

Not all caregiving is a heavy experience, by any means.
But many of us are faced occasionally
with the miseries of caregiving,
and some of us face these regularly.
What Karen Karbo learned,
what any of us may be learning,
is that even in the midst of sadness,
laughter can still be possible.
Sometimes the gift of our humor comes
as a welcome diversion from all
that our caregiving is requiring of us.
Sometimes our laughter serves as emotional release—
deeply buried tears come pushing up
through howls of hilarity.
Sometimes we come upon something
so purely, radiantly funny,
that we laugh involuntarily,
whatever else is happening around us.
Life can be like that—
comedy and tragedy in close proximity.
When our laughter erupts in our caregiving,
that doesn’t mean we’re avoiding or denying
the seriousness of what is happening.
Healthy laughter is simply a grace
by which we open to the moment,
and to one another,
and to shared feelings,
and to that whole wide range
of incredible life experiences.

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Validation

September 17, 2007

Betty, who is 90,
lives with her daughter, Laura.
They’ve been very close
through the years,
and now they’re close
in another way:
as care receiver and caregiver.
Theirs has been a reversal of roles.
Once so competent and independent,
Betty wants to carry on in life
as she has up until now.
But physically she is no longer strong
and mentally she is no longer competent,
which means she can no longer be independent.
The mother must now endure having limits
being put in place by her daughter.
And the daughter, always so obedient,
must be something other than obedient
if she’s going to provide truly loving care.
Neither quite likes her evolving role.
Both are grieving.
Betty grieves the loss of her abilities
and the loss of her freedom.
Laura grieves the loss of her mother
as she once knew her.
Now daily they do their dance of life together,
one learning painfully to lead,
the other learning painfully to follow.
Sometimes they step on each other’s toes.

Without question, those who are forced
into needing another’s care—
in this case our care—
have their work cut out for them.
Often they must deal with some sort of pain.
Their condition may lead them toward all sorts
of strong feelings.
They may also be grieving—
grieving what they’ve lost,
what they must give up,
what will never come to be.
They need and deserve our validation
for all that they now face.
But that is not the entire story.
Our caregiving leads us toward our own pain,
our own strong feelings,
our own grieving.
While we may feel sad about their sadness,
we’ll likely have our own sadnesses too.
Our fears, anxieties, and griefs will be different,
and perhaps less obvious, than theirs,
but that doesn’t make them any less important.
So, yes, let us care deeply for all
that is happening to the one in our care.
And let us be equally aware
of that which is happening to us, in us.
We can always use some validation ourselves,
and if it comes from nowhere else,
may it come from within.
May we also find it in these very words.

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!#*&!

September 14, 2007

Commentator Morton Kondracke
is the primary caregiver
for his wife, Milly,
who has Parkinson’s.
In his book Saving Milly,
he writes that he has tried
to be loving, patient, and supportive
ever since her diagnosis in 1988.
Largely he has succeeded, but not always.
Especially frustrating were those times
she would try walking by herself
when she wasn’t supposed to,
wasn’t able to.
She would fall and hurt herself
and he had to come running.
“Even though she was in pain,” he writes,
“and deserved comfort,
I’d explode in fear and anger:
‘I told you not to do that!'”
It upset him greatly to find her sprawled
on the floor, bruised and bleeding,
which happened a number of times.
It angered him that she would endanger
her health in that way,
so frequently, so unnecessarily.

Not all caregivers are as honest
about their feelings of anger.
How do we reconcile
our wish to be loving toward someone
with our impulses to rant and rave at them?
Perhaps they’ve done something dangerous.
Maybe they’ve been demanding
or belligerent, unreasonably so.
Maybe they’ve acted rudely
or said especially hurtful things,
uncharacteristically so.
In such a situation a common response is
to be frustrated or annoyed or downright mad.
This happens more often than many realize
or want to admit.
A 2002 national study documented
that family caregivers tend to evidence
higher levels of hostility than noncaregivers.
So the word is out to those who give care:
anger happens.
It goes with the territory.
When two people are in such constant contact,
and when they have so much to deal with,
such feelings aren’t just to be expected—
they’re virtually unavoidable.
While these feelings may be directed
toward the one in our care,
they may also be directed
toward physicians and nurses,
toward anyone who is less than
helpful or understanding,
toward God.
In reality the true source of our anger
is more likely what’s causing the unwanted changes
in this person we love and care for,
not to mention the unwanted circumstances
in which we now find ourselves.
Consequently, anger is not bad
any more than we are bad
for feeling upset and frustrated at times.
Anger is a sign we’re involved.
It’s a sign we care deeply.
It’s an indication that we have feelings too.
And it’s proof we’re perfectly human,
perfectly normal.

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Effortless

September 12, 2007

I interview caregivers
regularly these days.
One question I ask is
“What types of caregiving
have you done
through the years?”
People tell me about all kinds of situations.
After they describe caring for loved ones
following accidents, through illnesses,
and as death approaches,
they’ll often say,
“Of course, I cared for my children (or grandchildren)
after they were born.”
These are, without question, caregiving experiences—
ones that require plenty of time and energy,
ones that can extend for many years.
Yet this normal child-rearing type of caregiving
is unique in an important way—
it is usually anticipated.
This is what we want to do.
Often it is what we have longed to do.
Our caring flows out of us, effortlessly.
In a sense it is unstoppable.
I am learning, and re-learning, that
these days as a grandfather.
Any of us can learn this, and re-learn it,
as parents and aunts and uncles,
as stepparents and godparents,
as people whose ties are of the heart,
whether or not our genes are linked.
The love streams out.
It resists being contained.
It’s rather wonderful, isn’t it?

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Tentative

September 10, 2007

Karen Karbo has written
The Stuff of Life:
A Daughter’s Memoir.
It’s about how she responded
when cancer begins to claim
her widowed father’s life.
She makes it clear right from the start:
she is not suited for the caregiver role
she’s been called upon to play.
“I have little patience,” she writes,
“for the necessary routines of caregiving.
I trust doctors as much
as I trust mechanics,
and I am a barf-o-phobe to boot.”
She readily confesses all this and more,
and still she writes,
“Even though I don’t know anyone
less temperamentally suited to play nurse than me,
I vow to be there for Dad.”
As I reached the last page of her book,
which is filled with honesty, poignancy, and humor,
I said to myself,
“Though it was a struggle for her,
though her caregiving skills were limited,
still, she kept her vow.”
She was there for her dad.

Some of us are not constitutionally equipped
to be caregivers.
For whatever reasons, for some of us the caregiving role
does not drape very well across our shoulders.
Where others naturally step forward,
some of us naturally shrink back.
Where others seem to know exactly
what to say and do without even thinking,
some of us feel at a complete loss.
What are the words we’re supposed to use?
What is it we’re supposed to do?
How are we supposed to act?
We may understand why we’re this way,
or we may not have a clue,
but either way the reality remains unchanged:
someone we know needs care,
whatever our predispositions.
If that’s the way we’re made,
then in our own ways,
and as our abilities allow,
we’re called to do what Karen Karbo did:
to make a vow to be there.
A vow not to hide, or walk away.
A vow not to think only of our own discomfort,
as great as it may be.
For those of us who are not natural caregivers,
we may look upon these struggling efforts
as much less than our most shining moments.
Yet these efforts of ours can shine in their own way,
certainly for the one who needs care,
and perhaps even for the one who offers it,
however tentatively, however awkwardly.
Indeed, that very awkwardness may communicate
the depth of our intention
better than anything else.

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CDD

August 27, 2007

Dad had not been
out to eat in a while.
So I took him to Pizza Hut.
It was just the three of us—
Dad, me, and the wheelchair.
Getting through the double front doors
was a hassle, but we made it.
Maneuvering among the close tables in the crowded dining room
was another feat, but we succeeded.
Then, once seated, Dad needed the restroom.
More tight spaces,
more making others wait for us,
more looks from people around us.
Lunch was becoming one obstacle after another
and each time we were on our own.
I felt as if we weren’t supposed to be there.
Lunch done, we slowly made our way
to pay our bill and leave.
I eyed the tricky front doors again,
wondering how best to negotiate them this time.
At just that moment
a man stepped forward and held one door
while his young daughter held the second
and we sailed through with ease.
I was so grateful for their small act of kindness,
the only one we had experienced
through the unexpected ordeal of having lunch out,
that I wanted to hug them as we passed by.
I’m sure our thanks sufficed.

I’m learning, as I suppose you’re learning,
that some people want to help,
and are naturally inclined to help,
and what they do does help.
There are other people who are not made that way—
they stand back rather than reach forward,
or they ignore our plight or our hurt,
or they act impatient when we’re doing
the best we know how.
We cannot always predict who has the caregiver’s heart—
they come in all body types, all fashion styles,
all age groupings, all known genders.
Yet our experience teaches:
some “get” caregiving
and some just don’t.
And if they don’t, there’s not much reward
in trying to change them.
But we can show appreciation to those who are the caregivers,
and we can attempt acceptance for those others
who suffer from CDD—Caregiving Deficit Disorder.
Maybe they’ll get help some day.
In the meantime, we’ll keep enjoying one another—
loyal caregivers and thriving care receivers alike,
everyone who “gets” it and even those who don’t.
God bless us all.

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Who?

August 17, 2007

This is Brendan Halpin:
Public school teacher.
Young married man.
Father to a 4-year-old.
Caregiver to his wife
who is ill with cancer.
He tells their unfolding story
in his book It Takes a Worried Man,
which he composed like a personal journal.
At one point he confesses that he feels resentful.
He needs to take care of his wife,
because she is so ill.
He needs to take care of their daughter,
because she is so young.
All that, he admits, makes perfect sense,
and is something he ought to do,
something he wants to do.
Still, he writes, “Who’s taking care of me?
Who cares that I got less
than five hours sleep
and I have to go work a full day?
Who gives me a hug
when I am scared in the middle of the night?”

Brendan’s questions are valid and make real sense.
Whether we realize it or not,
questions like these are common
among family caregivers today.
“When I’ve done all the caring I can do,
who will in turn give care to me?”
“When my caregiving has exhausted me,
who will at least notice my exhaustion,
if not help in some way?”
“When I myself am hurting,
who will be there to soothe,
to listen, to encourage?”
Honest questions all.
Human, natural questions.
Questions that no committed caregiver
should feel ashamed for asking.
For we all have our limits,
and those limits vary.
We all have our needs,
and those needs are individualized.
We all will do well to have support in some form,
wherever that support comes from.
Our questions may not have easy answers,
or ready answers, or even sure answers,
but that should not stop us
from giving them voice.
For that is the only way
our voices can blend with other voices,
allowing us to know we are not alone,
which is at least a beginning.

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Same Care

August 15, 2007

Healing Lessons is the story
of how Andrea Winawer
dealt with her cancer.
It was written by her
physician husband, Sidney.
The book is equally
about his slow transition
from being a doctor specializing in cancer treatment
to being a caregiver of a loved one with cancer.
As her disease spread,
Andrea sought out alternative treatments,
ones her husband did not favor,
accustomed as he was to a medical intervention model.
Having always loved her husband’s rich voice,
Andrea asked him to read guided imageries aloud to her.
He did as she requested, he writes, “to humor her.”
As he continued his daily readings,
he realized how much this practice comforted her;
he could see it on her face.
Then he became aware of something else:
“I told myself for a while
I was doing it only for Andrea’s benefit.
Then I realized that I, too,
was feeling its effects.
I became calmer as I read to her
and we entered the new place [in the imagery].
I relaxed as I watched her relax.”

Isn’t it interesting how this happens?
We lead another through a guided imagery
and we are led to that same place ourselves.
We take the other for a walk outdoors,
believing that will help them,
and the next thing we know
we feel ourselves lifted and filled
by the sights and sounds all around us.
We think they will benefit from reminiscing
and when they’re done talking,
we sense we’ve benefited as much as they.
For their well-being we offer spoken prayers
and then we find ourselves comfortably cradled
by those very same heartfelt words.
Almost anything we do to help another—
if it’s done wisely, humbly, lovingly—
can circle around and help us, too,
without our ever intending that.
We share a piece of poetry,
a piece of scripture,
a piece of beauty,
a piece of ourselves,
and the support or encouragement we wanted to give them
comes gently, surely back to us
and we know ourselves to be
quite thoughtfully cared for.

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