Archive for the ‘Validation’ Category

Halo

October 6, 2008

Vicki Graboys cares for
her busband, Tom.
He has an aggressive form
of Parkinson’s desease.
Life in the Balance
is the book he wrote
about their story.
He needed to write it promptly
before his dementia made it impossible
to pull his thoughts and memories together.
He included this about his wife,
whom he married just before he was diagnosed:
“I will try, often to excess, to express my gratitude and profess my love, which only makes her burden heavier, for it reinforces the unequal distribution of power in our marriage, power she doesn’t want and wears uncomfortably. I sometimes call her my angel, but she doesn’t want me to hang a halo on her. She feels she can’t—and doesn’t want to have to—live up to such lofty, unrealistic expectations.”

I find this to be a common feeling
among the caregivers with whom I speak.
They don’t see themselves as angels
or as saviors
and they don’t want to be seen
in that way by others.
They’re not do-gooders.
They’re simply loving family members and friends
who have risen to the occasion—
the occasion of doing what they can
to support, guide, and encourage,
to cook for and look after,
to walk with and sit beside,
to hold the other’s well-being
as a sacred trust.
Is what they do laudatory?
Yes, very.
Do they fulfill a role
that is life-giving, perhaps even life-saving?
Absolutely.
But do they wish to be stuck on a pedestal
for what they do?
Not really.
Most caregivers I know
are content with being recognized
from time to time,
and validated,
whatever the source of that validation.
But they’re not prepared
to serve as saints.
They have more important things to do.
Like give good care.

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Complex

March 27, 2008

Marty is a family friend.
She’s been a caregiver
for her husband Lou
since he had a stroke.
That was 20 years ago.
We spoke this week
about what those years have been like.
The heart bypass surgery.
The progressive waning of his energy.
The diminished family income.
The decreasing social contacts.
Now the awareness he could die anytime.
In the act of hearing her story,
one detail building upon another,
I came to realize how all-encompassing
her caregiving journey has been.
I felt admiration for her strength and stamina,
for how she has carried on so long
without drawing attention to all she does,
all the changes she’s had to make.
Marty paused in the telling of her story,
looked away, and then looked back.
“Right now I worry more about Amy
than I do Lou.”
Amy?
Amy is her daughter, age 39 and single;
the two are best friends.
Amy has not been feeling well.
“It appears she may have lupus.”
Lupus: a disease both progressive and irreversible.
Marty shook her head,
wiping the tears from her eyes.
Feeling the weight of her fears,
and the complexity of all her caregiving,
I shook my head too.

Marty’s quiet voice forcefully reminded me
of an important truth:
Family caregiving is seldom a simple, single story.
Wives give care to husbands,
and husbands to wives,
while simultaneously having to care for
one or more children with needs no less great.
Adult children care for aging parents,
as many as three or four,
sometimes in different, even distant, settings,
each parent requiring unique, changing support.
Grandparents care for a loved one their own age,
while bearing responsibility for family members
one or two generations below them.
These multiple, intergenerational relationships
often go unnoticed by those
on the outside, by the world at large.
But make no doubt:
simple caregiving can be quite complex.

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Respite III

February 28, 2008

Every single caregiver
needs time off
and time away.
All caregivers
need occasional freedom
from everyday responsibilities.
All of us deserve to have periods of time
not devoted to caring for someone else,
however much we love that person.
We need to run errands.
We need to keep appointments.
Some of us need to attend meetings,
others, to show up at work.
We may have hobbies to engage in,
friends to spend time with,
other family members to focus on.
And—this is very, very important—
we have something else to do:
next to nothing at all,
if it feels right.
Every now and again,
the best use of an hour might be,
not in “using” it,
but in simply enjoying it.
Working a crossword puzzle, for example.
Playing a computer game.
Reading a second-rate mystery.
Watching a third-rate TV show.
Gazing out the window.
Doodling with colored pencils.
Leafing through photo albums.
Surfing the internet.
Skipping stones across a pond.
Identifying the shapes in clouds.
Or closing our eyes
and not identifying anything at all.
Bertrand Russell had it right:
“The time you enjoy wasting,
is not wasted time at all.”
Sometimes the best management of time
for a really dedicated caregiver
is to become a dedicated loafer,
a serious slug,
a committed dawdler,
a staunch goof-off,
a world-class putterer.
If we have any questions about this,
we can tell ourselves that Bertrand Russell,
the famous and much-published philosopher,
said so.

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Respite I

February 21, 2008

Last week I spoke
with a woman
who’s the main caregiver
for her husband.
A serious brain injury
now prevents him
from working, driving, walking very far,
even from being alone for very long.
Her daily life has changed radically
since he was hurt eight years ago.
I asked her how she kept going.
“Respite care,” she replied.
“I take him to an adult day care center
three days a week.
I’m able to work part-time,
plus have a little time to myself.
Having this new-found freedom,
while knowing he’s cared for and safe,
has made all the difference.
My spirits have really lifted.
I’m a better caregiver for this, too.”

Respite has several dictionary definitions.
Among the oldest is this: “to relieve
by a pause or interval of rest.”
A caregiver respite is a temporary relief
from the responsibilities related to the one
who’s in daily care.
Allowing for such help when it’s offered
and arranging for it when it’s needed
are invaluable aids to healthy caregiving.
A break from caregiving refreshes.
It can provide a needed perspective.
It helps one become more grounded,
more steady, more stable.
It protects one’s individuality
and preserves one’s sense of independence.
Clearly, respite is not a caregiver luxury.
It’s a caregiver necessity.

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Heroism

February 18, 2008

“It’s really amazing
all she does
as a caregiver!
Her efforts
are heroic.”
Have you ever heard
comments like this before?
I have, a number of times.
A loyal wife quits her job to provide
around-the-clock care for her husband.
A retired man pushes his limits,
refusing to let anyone help him,
as he cares for his increasingly combative wife
who’s debilitated by Alzheimer’s disease.
“That’s heroism in action,”
people say in praise.
Without question, all around us
are everyday caregivers who are also
everyday heroes.
Such people deserve our respect and support.
But I fear a danger can lie
in labeling such behavior “heroic.”
When caregivers disregard their own health,
becoming so ill they can no longer provide
quality care, or any care at all,
is that ultimately heroic?
When caregivers neglect families
or sever ties with close friends,
creating barriers while isolating themselves,
is that heroic?
When caregivers refuse others’ assistance,
especially when their care receiver would benefit,
is that really heroic?
I propose that we rethink our idea
of what constitutes heroic caregiving.
I think truly heroic caregivers find ways—
however challenging this may be—
to watch out for their own health no less
than for the one in their care.
I believe true heroism can be shown
when other relationships are simultaneously honored,
other roles are lovingly preserved.
I propose that caregiver heroes
are those who honor their own needs
over the course of time,
protecting their own wholeness and well-being.
I believe the gloriously heroic
is within reach of all caregivers.
It requires not so much superhuman effort
but very human wisdom and understanding,
for oneself as well as for others.

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Being Given To

January 28, 2008

Janet’s breast cancer
was in remission.
Then in 1998 it returned.
Her partner, Stan Black,
cared for her faithfully,
though tentatively.
He had never been a caregiver before.
He wrote about his experiences
in “The Elephant in the Room”
in the book An Uncertain Inheritance.
Stan includes what I believe
is a common, supportive truth
for many caregivers.
I learned to be both tender and strong. And when, as her condition worsened, I weakened, I also found I could recover. I now believe that a loving partner can help you find strengths within you that you didn’t know were there before.
When things got really bad, Janet continued to give me trust that allowed me to help her; she even, I felt, showed me the way.

As caregivers, we may concentrate
so much on our role
that we don’t realize or acknowledge
all our care partners do to help.
That other person may show us trust,
as Janet did Stan,
allowing us to do what we do
more comfortably and naturally.
They may show belief in us,
encouraging our belief in ourselves.
The one in our care may offer
gentle guidance to help our caregiving be
both effective and appropriate.
They may offer their understanding
or confer their forgiveness
when we fall short.
Their cheer may lift it.
Their hope may buoy our own.
In being honestly who they are,
they may help free us to be
honestly who we are.
We dare not demand any of this,
or even expect it, of them.
But when they help us find strengths
we didn’t know we had,
we can at least let them know.
And we can make sure we say “thank you.”

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Thank You

January 24, 2008

Earlier this week
I was in Sioux Falls
presenting about caregiving.
Three sorts of people
were in the audiences:
family caregivers,
volunteer caregivers,
and professional caregivers.
I ended my talk as I often do,
expressing words of appreciation to them
as individuals and as a group.
As I looked into their faces
while speaking my feelings and thoughts,
I saw tears in people’s eyes.
I believe that was because
they were not used to having
their dedication so publicly recognized,
their work so honestly affirmed.
My words to them that day were impromptu,
so I cannot recreate my exact message.
But this is the sort of thing
I attempted to express then,
and what I express to you now,
you who are finding meaning
in reading The Thoughtful Caregiver:

The work you do as a caregiver
is far from easy.
It requires not just physical energy
but mental discipline and emotional stamina.
And not just occasionally but day after day.
Much is asked of you:
your positive attitude,
your compassionate stance,
your openness to feelings,
your willingness to listen well.
Much is needed from you:
your nonjudgmental acceptance,
your heartfelt honesty,
your unashamed humility,
the courage to be vulnerable,
to be authentic,
to be human.
Sometimes it may seem
that your work is never done.
It may feel as if
the responsibilities are much to bear.
You may experience a loneliness
that you wish you didn’t.
On top of all this,
you may not hear many words of appreciation
or be shown many signs of support.
But know this:
you are doing something very important,
even if recognition of this is overlooked,
even if gratitude is in short supply.
You are making a difference in another’s life,
perhaps in more ways than you know.
You are living out the meaning of love,
even if that is not always obvious,
or sure, or comfortable.
So for all these reasons and many more,
thank you.
Thank you for all your caring in the past.
Thank you for what you are doing
and what you are standing for,
right now, right where you are.
Thank you for being ready to carry on tomorrow
with every bit of determination
that you can lovingly muster.
Just this: thank you so very much.

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Rewarding

December 21, 2007

Not long ago
Caring Today magazine
conducted a study.
500 family caregivers
were asked about
their experiences.
As we all know,
studies like these often point out
the difficulties and dangers of this work.
The likelihood of increased stress.
The danger of depression.
The low levels of self-care.
So I studied the tabulations of their answers
with particular interest.
First, there was the issue of expectations.
46% of the 500 respondents
said they anticipated they would enjoy
the tasks associated with their caregiving.
How many actually did enjoy
doing what they did?
69%.
Isn’t that interesting?
They were also asked if they expected
to find their caregiving rewarding.
60% said they imagined they would.
How many really did find this true?
79%.
The other issue related to lifestyle.
When asked what feelings or actions
had increased as a result
of their becoming caregivers,
respondents reported the following:
33% said they felt more focused in life.
41% said they had become more organized.
And well over half—59% to be exact—
said the quality of the relationship
with the one in their care
had increased.
These findings in no way deny
the inherent strains and risks
associated with becoming a caregiver.
But they do force us to look at
other aspects of this work too.
Maybe the figures above
confirm our own experience.
Or maybe we’re among those
who experience less enjoyment
and less reward.
Either way, we can know two things:
We are not alone in our feelings.
And the possibility of increased closeness
and deepened meaning
unquestionably exists.

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