The Thoughtful Caregiver

Bill never regained
his full physical health
after his stroke.
He lost his job,
his sense of security,
and his independence.
Mostly he lost much of his self-esteem.
All this, of course, was very hard to deal with
and his feelings easily overflowed.
Often they came out as sadness or depression,
and understandably so.
But sometimes his feelings took another form:
anger.
He got angry at his wife, Ann,
very quickly and quite loudly.
He yelled at their children
about the smallest of matters.
Even the family dog didn’t escape his outbursts.
As the pressure within their home built,
Ann sought out a counselor
to help her understand and cope.
What did Ann come to understand?
Bill had lost his former sense of control.
He felt embittered about the unfairness
of what had happened.
He was resentful at those who lived normal lives
and who didn’t appreciate all they had.
He took offense at those who pitied him.
In truth he was mad at the world at large,
at life itself.
Who was within convenient range
when his feelings boiled over?
Not those who no longer came around.
Not the whole world at large.
Just those within easy reach—
the members of his family.
And with whom did he feel safe,
whether he understood it or not,
to ventilate such strong feelings?
Those who had long known him, long loved him,
and would do their best to accept him,
whatever he said or did.

The story of Bill and his family
is a common caregiver story.
Those who are most available to,
and most trusted by, a hurting care receiver
are also the most convenient targets,
and usually the safest.
That awareness may not make the anger
any more agreeable,
but it makes it more clear:
somewhere way down deep
love is at work.

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Mary and my wife Bernie
are very good friends.
They see one another
regularly.
Mary is very engaged
as a caregiver.
Her husband is in poor health,
with three separate medical conditions,
each very serious.
I spoke with Mary by herself recently
and asked about her caregiving—
what was hard and what wasn’t,
what helped and what didn’t.
She was clear about what helps a lot:
“I don’t like to burden family members
with all that continues to happen
and all that I feel in response.
It helps so much to turn to Bernie
to get things off my chest
when I need to.”
“Bernie finds your time together meaningful,”
I said, knowing that to be true.
“But,” Mary went on, “I don’t think she realizes
how much good it does when she listens
and lets me talk all I want.
It always helps me.
It also helps my children
because then they don’t have to hear
the same things over and over,
things that no one can change.
And it helps my husband
because after ventilating my feelings to Bernie,
I return to my role with more energy
and more acceptance.
When Bernie helps me,
she is helping many others too,
even if she doesn’t always know it.”

That’s a magic of thoughtful caregiving:
one act of care often splits off
in several different directions,
whether that’s intended or unintended,
touching the lives of unseen others.
It becomes less a direct line of care
and more an expanding web of care,
branching out every chance it gets.
Rather lovely, isn’t it?

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I’ve known Shelley
for twenty-five years.
She is very sweet,
very caring.
She has always been so.
So she surprised me
with her response when I asked her,
“Did you spend time with your father
this past week?”
Her father has emphysema.
He had an especially debilitating ten days—
he was on oxygen constantly, and mostly bedfast.
“No,” Shelley said, “I didn’t.”
I didn’t expect that response from her.
I knew that distance wasn’t an issue—
her parents live quite nearby.
I knew that she has always been good
about making time for them.
My face must have registered my surprise.
“He didn’t want me to see him that way,” she said.
“You know, lying around all day,
hooked up to an oxygen tank,
looking and sounding very weakened.
So I honored his wishes.”

Shelley’s father serves as a reminder
that not everyone who deserves care
wishes to be shown care.
In his case, he didn’t want his daughter
to witness firsthand the sight of him
as a man who was less than robust,
less than able to walk out the door
and play 36 holes of golf.
Some people are embarrassed
about the way they look or sound or act
when they’re ill or incapacitated.
Some don’t want to worry
their family members or friends,
or see the worry of those faces.
Some don’t want “to put other people out”—
they feel they don’t deserve the attention.
Some simply value their privacy
and want to protect their sense of independence,
even if it more or less isolates them.
Whatever the reasons given or not given,
we caregivers are called upon to remember
that our presence is not always wanted,
even if that is what we want.
And then we can show our care
by not showing our care,
at least in person.
That need not stop us from using the telephone,
or sending a note or gift,
or holding them in our thoughts,
or offering the most loving of prayers,
not just once but regularly.
If it is their wish,
we can be at our most caring
by not being there in body.
Mentally, emotionally, spiritually—
that’s a whole other matter, of course.

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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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Julia Glass had cancer,
and more:
Surgery.
Chemotherapy.
Pain.
Fear.
She and her husband Dennis
also had something else after a while.
As she relates in An Uncertain Inheritance,
Wit, I came to realize, is a precious and essential kind of care when one is ill—not jokes; just the weird new perspective of someone who stands on the outside yet loves you and wants to see you well and happy. Dennis had recently spotted bicycle messengers zipping around town with LED strips mounted behind them, clever advertising space for all manner of local commerce, from ministorage to livery cabs. My bald head, he suggested, might be useful to sell as an advertising opportunity. We decided I could wear an LED headband with a revolving commercial similar to the strip of headlines that orbits the center of Times Square. “How about,” I suggested, thinking of all the pharmaceutical ads lately proliferating on TV, “‘Adriamycin! Ask your doctor if it’s right for you.’”

Comedy, Lenny Bruce once said,
is tragedy plus time.
As caregivers, we may face the tragedy
of another’s disease or accident or serious loss
as we go through our days with them.
Early on, the sadness can be severe,
the misery unavoidable.
But over the course of time,
often something begins to shift.
Even if the gravity of the situation is
no less real, no less daunting,
it somehow becomes more familiar,
more usual.
So what do we do next
when the heaviness becomes old hat?
Sometimes we joke about it,
as one way of facing this hard reality
and including it in our conversation,
without succumbing to it,
without giving it complete power over us.
As we jest in a manner
that has a dark humor to it,
and as we smile at these weird thoughts,
we partially diffuse some of the fear,
some of the dread.
We lay claim to our humanity
by choosing to laugh freely
at what once brought tears.
Sorrow, we’re reminding one another,
is only part of the story.
When we can laugh,
even with a quirky sense of humor
that others may not understand,
we look unflinchingly at what we’re facing
and say clearly, “Joy still exists.”
So does hope.
So does our bond,
strengthened by this amusement we share.

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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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Lynn’s mother was,
in many ways, charming.
She was also,
in as many ways,
an accomplished perfectionist.
Not surprisingly,
she and Lynn had their difficulties
through the years.
When her mother became seriously ill,
Lynn arranged to spend extended periods
at her mother’s side, half a continent away.
At first things went well—
they were pleased to be together
after many years of being apart.
But eventually old patterns emerged.
Lynn felt she couldn’t do much that was right
in her role as a caregiver,
no matter how hard she tried.
Terribly frustrated and distraught,
Lynn went to see a counselor.
“I can’t measure up,” she said,
“to my mother’s sense of perfection.
I’m always falling short.”
The counselor asked, “What are your options?”
“As I see it, there are only two:
perfection and imperfection.
I can keep trying to be perfect,
or,” Lynn said, almost laughing,
“I can strive for imperfection.”
Said the counselor with a smiling nod,
“Bingo.”

Striving for imperfection is not at all
the same as settling for mediocrity
in our roles as caregivers.
To strive for imperfection means to let go
of pursuing impossibly high standards,
ones that no human being
can meet without fail.
Rather than working feverishly to achieve
the ideal of spotlessness,
might we not aim for allowing
a few spots to appear here and there?
Rather than imposing incessant orderliness,
why not endeavor to accept—
perhaps even to welcome—
some casual disorder now and then?
Rather than chasing flawlessness,
why not relax a bit and resolve to admit
a random flaw in how we do our work
without becoming horribly upset?
Rather than letting someone dictate
what’s impossible for us to achieve—
knowing that “someone” might be us—
why not let ourselves dabble
with our natural, God-given fallibility?
Why not sometimes favor inexactness
where exactness matters not at all?
Why not choose to be hopelessly human,
realizing that’s actually the same—
some would say perfectly the same—
as being hopefully, blissfully, genuinely human?

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In “The Vital Role”
Amanda Fortini describes
the unusual illness
she got in Belize.
For several years
she experienced waves
of weakness and nausea very unpredictably.
She tells how a near stranger
became her caregiver.
“J” is the only name Amanda gives
this spirited woman, 20 years older,
who first moved into Amanda’s apartment,
and later took Amanda into her own place.
J cooked, cleaned, and cared
for Amanda months on end,
quite willingly, always without pay.
While Amanda enjoyed J’s companionship,
she felt something else too:
One of the most trying aspects of being sick is being cared for, as counterintuitive and thankless as that may sound. Nothing makes a person feel out of control—and illness by definition is a loss of control—like having to cede it to another person.
Later on she quotes Virginia Woolf
before making her point again:
“Always to have sympathy, always to be accompanied, always to be understood would be intolerable.” This is the great paradox of being cared for; as much as you want someone there for you, you also, in the end, don’t.

Amanda Fortini’s writing invites us to consider
the situation of the one in our care.
After putting ourselves in the other’s shoes
(or slippers or pajamas or hospital gown),
we might pose several questions.
What are the dominant feelings nowadays
of this person in our care?
Are these feelings comfortable or uncomfortable?
What are the changes they have undergone
as a result of their illness or incapacitation?
Are these changes wanted or unwanted?
What has happened to their sense of identity?
Their sense of worth?
Their sense of life satisfaction?
How might all this influence
how they relate to us?
And how might they be feeling
about this caregiving of ours
that they’re regularly receiving?
Might any part of them identify
with Amanda Fortini’s feelings,
not wanting us to be there as a caregiver?
Our answers to these questions deserve
to inform how we do what we do
if thoughtful caregiving is our goal,
don’t you think?

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