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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Tom Graboys, M.D.
taught at Harvard.
He was regarded as
a leading cardiologist
not just in Boston
but in the U.S.
Then at the height of his illustrious career
he developed Parkinson’s Disease
and Lewy body dementia.
He continued his practice for a short while,
but then he had to relinquish this work
that meant the world to him.
In his memoir, Life in the Balance,
he recounts the many changes he’s now making.
He writes not just about himself
but about his caregiving wife too:
“In the summer of 2006, unbeknownst to me until recently, Vicki called my office just to hear the message on my voice-mail, a message I recorded long before the slowness descended, just to hear the voice of the old Tom. She grieves, as I do, the person I used to be.”

A person with a progressive disease
will grieve their associated losses
as the incapacitation runs its course.
This also holds true for anyone close to them,
including any caregiving family member.
The person who’s suffering the debilitation
can no longer do what they once did
or be as they once were,
and that’s sad.
Similarly, the life the two have shared
can no longer be the same either.
In such a situation
grief is a very natural response.
This is as true for the caregiver
as for their care partner.
Any grief, of course, can be painful.
This particular sort of grief
can be unexpectedly sad.
But it’s important to remember
that such grieving is not bad for you.
It’s not wrong.
It’s certainly not unhealthy.
It’s not at all unloving.
Indeed, it is because we caregivers
love as much as we do
that we may grieve as much as we do.
Our love and our grief are interconnected.

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We know clearly
when caregiving starts.
We know how it feels
as it begins.
But what about
when it ends?
What happens then?
Our family has been caring for Dad
in various ways for several years.
At first we “looked in on him”
at his home on the lake.
Later we provided more direct care—
bathing and dressing him,
monitoring his medications,
negotiating his wheelchair,
handling all his finances.
On July 4 we took him from the nursing home
for a picnic at his beloved lake.
What a lovely day!
Until he fell, that is, breaking his leg.
He had surgery the next day.
That night he suffered a heart attack.
Eight days later he died.

It’s been five weeks now.
Not only do I miss him,
but I miss the caregiving.
I miss the natural contact it provided.
I miss holding him as he shuffled along.
I miss shaving him as he sat quietly.
I miss conversing with him
as I clipped his nails.

Our caregiving always comes to an end.
Maybe we want that to happen—
the demands seem too much for us.
Maybe we don’t want it to end—
we’re happy as things are.
Maybe we’re of both minds.
But our caregiving will end,
somehow, sometime,
one way or another.
Whether we dread that,
or hope for it,
we dare not forget its truth.

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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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The Diving Bell
and the Butterfly
is a true story.
Jean-Dominique Bauby,
a 43-year-old Frenchman,
suffered a massive stroke.
He was left with his full mental capacities,
but he lost control of his body.
Literally he could do only one thing—
blink his left eye.
He was victim of what’s called
“locked-in syndrome”—
he was locked in his body.
Arduously he learned to communicate
through the help of a speech therapist.
She devised a special tablet
on which he could identify alphabet letters
by the use of his blinks,
laboriously creating words, then sentences.
In the movie version of the story,
he finally blinks his first message.
It is, “I want to die.”
His caregiver, the therapist, is outraged.
She responds fiercely,
“How dare you!
That’s a terrible thing to say!
I’m not putting up with that.
You think of something else!”

Sometimes we caregivers may not like
what the one in our care expresses
in all apparent honesty.
We may be troubled by what they feel
and by how strongly they feel it.
We may be tempted to respond
in the manner of that speech therapist.
“No, don’t say that!
No, don’t feel that!”
In situations less extreme,
we may find ourselves wishing that
this other person acted happier,
or chose to talk more,
or showed greater interest in life.
Such wishes, and others like them,
can be common among caregivers.
But I’d like to ask this question
of all caregivers, including myself:
Who are such wishes really for?
Entirely for the one in our care?
Or do they involve us too?
How much are our wishes
a reflection of our own needs?
How much are we wishing to avoid facing
the other’s despair,
or the other’s loneliness,
or the other’s fears?
How much are we wanting to feel better
about how well our caregiving is going?
How much are we pushing away,
whether it’s conscious or not,
our own uncomfortable feelings?
True, our desires may relate only
to the one in our care
and not be about us at all.
But it’s worth our looking within
and becoming honest with ourselves
and owning what is ours to own.
The other person deserves that.
So do we.

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Grace, age five, fell
and broke her arm
in dancing class.
After surgery, strep infection
invaded her bloodstream—
a very serious situation.
Her mother, the writer Ann Hood,
did all she could for her daughter,
sleeping at night on the hospital floor.
But the infection could not be stopped
and, tragically, Grace died.
In a memoir Ann laments,
“Somehow I had let this horrible thing
come to her.
I had not done my job.
I had not protected her.”

There really wasn’t anything more
Ann could have done for Grace—
the story makes that clear.
Still the mother felt
she had failed her daughter, critically.
She had not prevented what happened.
Ann’s situation was extreme, to be sure.
But the feelings she had as a caregiver
are not all that unusual—
feelings of yearning to protect
while being unable to protect.
This is especially true if the one
in our care is a child,
or someone younger.
However, it can also happen
with anyone we love,
anyone we’re connected to,
whatever their age.
We want to protect.
We’re geared to protect.
More, we ought to protect—
it is our role.
And often some part of us believes
that we can protect,
no matter the circumstances.
But reality teaches us a lesson:
it is physically impossible for us always
to “be a cover in front of,”
which is the derivation of protect.
We cannot hold a screen against
every hurt, every accident, every illness.
We cannot serve as a shield
against anything ever going wrong
with someone we’re close to.
We cannot be a barrier
to another’s disappointments,
to all their sorrows.
We cannot stop natural aging,
natural weakening, and natural dying.
But that doesn’t mean we’re incapable
or that we’re failures in our role.
In fact, it is the capable caregivers
who understand the limits
of their ability to protect
and—however much they wish otherwise—
make their peace with those limits.

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Andrew Solomon has written
“Notes on Accepting Care”
in the new anthology
An Uncertain Inheritance.
He describes a time
when he was clinically depressed.
Even getting up and taking a morning shower
was more than he could handle,
so he would stay in bed all day.
His mother had recently died,
so it fell to his father to care for
this unmarried adult son.
Andrew depicts what it’s like
to be on the receiving end of care
as a very depressed person.
He makes two points (among others):
“A depressed person cannot be drawn
out of his misery with love.”
Love alone will not do it,
however hard we try as caregivers,
however much we care.
A truly depressed person
may not believe that love,
or be able to accept,
or know how to respond to it—
that’s beyond them.
The second and related point is,
“You cannot undepress another person.”
As people who want to help,
we may not wish to read Andrew’s words.
They seem to call into question
our ability to make a difference.
But that’s not the case, really.
For his complete sentence reads,
“You can’t undepress another person,
but don’t leave.”
Choosing not to leave—
that what we can do.
As trying as it may be, we can stay,
refusing to desert them.
We can sit with them in their woeful place,
so they’re not left entirely alone.
We don’t have to talk—
in fact, talking may get in the way.
We don’t need to hover—
in fact, waiting around the corner
may be what works best at times.
We can resolutely remain within reach,
performing small everyday acts of care,
while believing and hoping
and patiently continuing to love.
And those acts of ours
can help make a real difference,
in the fullness of time,
as other factors come into play,
as healing comes to work its magic.
We cannot undepress another person,
but we can accept them as they are
in their bleak darkness.
We can wait with them there,
holding a light that glows
more than it penetrates,
believing that their own light
can one day return.

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Our friend Patty cared
for her husband Walt
until he died of cancer.
I can still remember
how Patty looked
during those long months.
Sadness clouded her eyes,
replacing what had been a twinkle.
Her voice lost its inflection and energy.
“This is so depressing,” she said.
“I know,” I said, nodding,
not knowing what else to say.

Patty was depressed
as she cared for Walt so valiantly,
yet also so helplessly.
Their retirement plans were dashed.
Their long marriage was ending.
Walt was suffering on some days.
Who wouldn’t be depressed?
That’s what I told her:
“Your depression makes sense.”
Another time I said,
“Hang in and ride it out.
Things will eventually look different.”

We’re inclined to push away dark times.
We don’t see value in them.
We think there is something wrong
about being depressed.
But I wonder.
Is it wrong?
To be clear: I would never advocate
that anyone seek depression.
Yet it seems to me
that when depression accompanies a time
of suffering or loss or helplessness,
it comes with some reason behind it,
some meaning attached.
It comes with a message:
“This is sad and unfortunate;
this does hurt.”
There are times when that message
is the unavoidable truth.
When that is the case,
then avoiding truth means avoiding life.
So if we move toward the depression,
if only a little,
rather than running from it,
what might happen?
Might we come in time
to an honest and compassionate acceptance
of our natural human limits?
Might we come eventually
to a more serene understanding
of life’s inevitable realities?
Might we someday arrive at
a surer awareness that we are held in love,
even when we wonder?
Might we come to realize
that depression need not hold
the final word—
that joy may hold it,
or perhaps peacefulness,
or deep, deep gratitude?

By the way,
the twinkle has returned to Patty’s eyes,
though it’s a little more radiant.

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Audrey’s husband has
long-standing health problems.
He’s been near death
more than once.
Now her daughter,
who lives by herself,
has been diagnosed with an arterial blood clot.
The prognosis is uncertain,
both short-term and long-term.
Audrey’s daughter-in-law, who lives nearby,
is struggling with her father’s impending death,
as is that whole family.
So fear and anxiety fill Audrey’s days.
She is on caregiver overload.

My wife Bernie and Audrey are friends.
So Bernie invited Audrey over Friday morning.
She prepared special muffins
and coffee in holiday cups.
She started a fire in the fireplace,
lit candles around the living room,
and put on quiet background music.
When Audrey arrived, they sat on the couch,
watched the fire, and talked at length.
Bernie mostly listened and empathized.
Audrey spun out her feelings and concerns.
But after awhile she also spoke about
the everyday events of her life—
her quilting, Christmas plans, other friends.
The warm atmosphere and the set-aside time
worked together to create a space
that Audrey could make her own
and do with as she pleased.
That’s exactly what she did.
By the time she left,
nothing had changed about Audrey’s situation,
but she had changed a little.
She was a little more relaxed,
a little more refreshed,
a little more ready to return to her life.
Audrey had been on the receiving end
of Bernie’s restorative care.

When we think of giving care to others,
we often think of the ill, the disabled, the dying.
Sometimes those who need our caregiving
are other caregivers themselves.
Who will encourage those around us
who strive so hard to encourage others?
Who will care for those
who deserve and need such care
as much as they’re hesitant to ask for it?
We can.
We who have been where they have been,
and understand.
We who have, at the moment,
the time and freedom to do that,
or we can make both of those.
We who know that caring for caregivers
is tremendously important,
and easily overlooked,
and beneficial beyond words.

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I write these words
the day before Thanksgiving.
Later today I’ll drive
to Warsaw, Indiana
and pick up my father.
He’ll stay with us
for three days.
He wants to be among family this holiday
but he’s also a little fearful.
Physically and mentally
he’s much more compromised
than he was last year this time.
He’ll require—
and he’ll accept with grace—
a lot of assistance.
He won’t talk very much.
He’ll lie in bed several times.
It will be a different holiday for us.

I lived most of my life
without thinking what Dad’s last years,
what his last Thanksgivings,
would be like.
I suppose I thought there would not be
all that much change.
And for a long time there wasn’t.
Until quite recently,
my father has been strong and able,
like I’ve always known him to be.
So there is a certain pain and grief
in witnessing what is now occurring—
for him, for me, for our whole family.

Ted Bowman in a current issue
of the journal Illness, Crisis, and Loss
uses a metaphor to describe the experience
of ending up in a place where
you didn’t expect to end up.
He quotes a mother who gave birth unexpectedly
to a child with Down’s syndrome.
It’s like getting on a plane, she reported,
bound for Italy, and once you land,
you find yourself in Holland.
You’re easily shocked and saddened
by this seeming mix-up.
Then Bowman quotes this insight:
If you spend your life mourning the fact that you didn’t get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

Dad and I have landed in our own
internal version of Holland.
We didn’t quite anticipate this destination.
We’re not seeing what we thought
we’d be seeing about now.
And yet…and yet…
as we explore these new surroundings,
there are some very special,
very lovely things to experience.
This Thanksgiving I find satisfaction,
even a quiet joy,
in caring for my father’s numerous,
sometimes almost child-like, physical needs.
I have come to feel grateful
that he and I can sit in long silence,
watching the lake, admiring the trees,
attending the ways of the hummingbirds,
without the encumbrance of words.
I enjoy these days watching him take
such pure pleasure in his chocolates,
such simple comfort in his bananas.
I now feel blessed that,
when I end a telephone conversation
by saying, “I love you, Dad,”
he says, “I love you too, Jim”
with a conviction and affection in his voice
that I have never heard before now.
This place we’ve landed—
it’s really quite lovely.

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Joy has been caring
for her widowed father
for over twelve years.
He became a paraplegic
when routine spinal surgery
went awry.
Joy and her father always agreed:
he would be cared for at home
until it became physically impossible.
But even with paid nurses and therapists
coming five and six days a week,
many hours a day,
the unrelenting responsibility got to Joy.
Normally an upbeat person,
she became increasingly depressed.
After listening to her story,
I referred her to a psychologist I trust.
That was three years ago.
She caught up with me recently.
Her bubbly spirit had returned.
“That doctor helped me so much,” she said.
“I feel like I’ve got my life back.”

Repeated studies document that family caregivers
are much more likely to be depressed
than the population at large.
When we sense that might be happening to us,
what can we do?
Many possibilities exist,
which we’ll address in coming entries.
But an important first step is this:
we can seek professional advice.
Our family physician is a good start.
She or he can help assess what is going on.
Is this truly a depression
or might it be something else—
a physical ailment, for example?
This person can refer us to a social worker,
a psychologist, or a psychiatrist.
It’s important that we feel comfortable
with whomever we decide to see.
If the chemistry just isn’t right,
we can exercise our human freedom
and try a different professional.
If we’re employed,
an EAP or employee assistance program
might be an appropriate solution.
Our local mental health association can help.
The appearance of depression is not a sign
that we’re weak
or that we’re somehow broken.
It’s a sign that our responsibilities are huge,
and we all have our human limits.
Sometimes our life becomes decidedly off-balance
and we’re missing our former resilience.
When that happens, let us remember
there are people around us
who have been trained to help
and are ready to help.
Just as we give care to another,
they can give their specialized care
to another as well—to us.

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Bernie was in chemotherapy
for her breast cancer.
Our lives were laden
with anxiety and fear.
As her caregiver,
I often felt lonely.
Our children were away at school.
Friends were supportive, but in the end
this was our journey to make, not theirs.
Also, my young business was struggling,
compounding my disquiet.
I remember that spring evening well.
My wife was lying in our bed,
ill from that day’s treatment.
I could not leave her,
nor did I want to leave her,
but I was tired of being stuck inside.
So I opened wide the windows
to hear Bernie if she called
and stepped into our backyard.
I stood there alone, feeling sad—
sad for Bernie and for our lives,
sad also about needing to be a caregiver.
In honesty, I was feeling something in addition—
I was pitying myself.
I don’t like to admit that, but it’s true.
Head down, shoulders slumped,
I stood in our lawn
and felt sorry for myself.
Then two things happened.
I slowly lifted my head
and before me was the sky—
an amazing quilt of cottony clouds,
radiant with reds and pinks and blues.
In the next instant
a quotation I had recently memorized
came at me and pierced me at my core.
Sometimes I go about pitying myself
and all the time my soul is being carried
on great winds across the sky.
It’s from the Ojibway Indians,
known to us also as the Chippewas.
In the evening stillness
I was stabbed with that spiritual truth
in a way I have not forgotten.
True, life was not going as I wished,
but had I been left entirely alone,
entirely on my own?
No, I had not.
True, I held fears and anxieties,
but were those all I held?
No, for I still carried fervent hopes,
and equally fervent dreams.
I still carried love
and I felt carried by love.
In that deepening dusk
I could not see what lay ahead
but was such mystery so bad, so wrong?
For could it not also touch a larger mystery,
including the largest Mystery of all?
And while I was busy pitying myself,
was I not being held by something
much larger than myself,
whether or not I had accepted that
moments before,
whether or not I had the words
to describe it at all?
I spent many evenings that spring and summer
photographing the swirling clouds
from our backyard.
I still remember the message those vibrant skies
sent me again and again
as I lived my way into my new work
as Bernie’s caregiver.
I hope you are finding your messages too,
helping you know that your soul is always,
always being carried on great winds
across the even greater sky.

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Brendan Halpin has written
about caring for Kirsten,
his wife with cancer.
It was a hard time.
While joy did not
completely abandon him,
he often had “the downs.”
Much of the time, however,
he felt something different:
[This experience] has really long flat stretches. Not up, not down—just flat. Some days I feel like I’m about to cry all day, but most days I just feel numb. I guess that is really a down in disguise.

Not all caregivers experience “the downs,”
but those that do experience them variously.
Some feel a low-level sadness
that builds gradually
and goes on for months.
Others have a sudden, negative change in outlook;
they become painfully despairing.
For still others, like Brendan,
life simply becomes very “flat”
without much interest or feeling.
Any of these experiences can be
an expression of depression.
Its common signs are varied;
they may, in fact, take opposite forms.
Depressed people often feel constantly tired,
and act lethargic,
although some become workaholics.
The depressed may have trouble sleeping,
or awaken without feeling refreshed.
Alternately, they may sleep more than usual.
They may show significant change in appetite—
eating less or eating much more—
and show a consequent change in weight.
Events that used to give pleasure
no longer do so.
The depressed often experience
a loss of self-esteem.
Life may begin to appear hopeless;
they may begin to feel helpless.
Uncharacteristic behaviors may appear,
like sudden outbreaks of anger.
Serious depression may lead
to thoughts of death or suicide.
Obviously, caregiver depression
needs to be taken seriously.
It presents obstacles not just for our health,
but for the well-being of whoever
is in our care.
The National Mental Health Association
has a confidential depression screening checklist
that can help us identify the appearance of depression
and help gauge its possible severity.
I filled it out today;
it took less than two minutes.
It can be found at
http://depression-screening.org.
The more we’re honest with ourselves,
the better we can deal with
whatever we have to face.
It’s important for us to remember
that whatever our feelings these days,
they need not determine what life
will be like for us in the future.

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Over the weekend
I visited Dad
in his assisted care facility.
We went out to lunch,
did some shopping,
and talked a lot.
Later we sat outside in the autumn sun
and I clipped his long fingernails,
something he can no longer do for himself.
“Boy, my toenails need it too,” he said.
So we went inside
and he sat in his comfortable chair
while I sat on the floor before him.
I removed his shoes and socks
and held his soft 87-year-old feet gently
as I carefully trimmed those bent, thick nails,
wanting to be sure that I didn’t hurt him.
It took a while.
That evening, hearing about my day with Dad,
a friend asked, “Did you mind doing that?”
My response was immediate.
“No, I didn’t mind at all.
In fact, I found it very meaningful.
I rather loved it.”
I don’t know how Dad felt,
because he never said,
other than being appreciative.
But I know how I felt.
I felt useful,
able to do something that Dad needed.
I felt pleased,
that he would ask me, then allow me,
to do this personal act for him.
I felt tenderness for him and closeness to him
as I cradled and massaged his feet
and tended those stubborn nails.
I felt great respect for this man
who has shown such strength through his life,
and is now showing that strength in other ways.
“Someday I’ll miss not being able to do this anymore,”
I said to myself as I lingered
in my caregiving chore.
Except it wasn’t a chore at all.
It was a contented act of love.
Perhaps you know that experience too.

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Richard and I talked
over lunch last week.
His wife June was diagnosed
with multiple sclerosis
nineteen years ago.
She’s been bedfast since 1999.
They have been able to keep her at home
this whole time.
A full-time aide comes five days a week.
The rest of the time—
evenings, nights, weekends—
Richard is her hands-on caregiver.
Meals, massages, bodily care, nursing duties—
it’s all his to handle.
I asked him how the experience has gone.
“The first two years were very hard,” he said.
“I was exhausted and exasperated.
I raced from one thing to another—
from my work as a teacher
to my work as a caretaker,
back and forth, day after day.
I felt trapped between the two.
There were even days when I asked myself,
‘How can I get out of this?’
I’ve never felt such stress in all my life.”

We don’t need to document here
all the ways caregiving can cause stress.
We know it already, deep inside.
The question is this: what will we do about it?
We can, of course, become aware of our stress levels,
knowing that the various stressors
affect all of us differently.
We can be sure to own our stress levels,
whatever they happen to be,
clearly acknowledging them to ourselves,
and ideally also to someone we trust.
Then we can learn—
from others like us, from professionals,
from our reading, from deep inside,
from life itself—
what stands a good chance
of giving us some perspective,
some relief, some healing hope.
Finally, we can act on these learnings,
realizing we must take the lead ourselves.
We cannot expect others to solve this for us.
When opportunities for lessening the burden
do come from others,
we can accept these kind offers
with gratitude and with grace.

“What changed after the first two years?”
I asked Richard.
“I went to a therapist,” he replied.
“One session was all it took.
After she heard my story, she said,
‘You need a life that involves more
than just being your wife’s caregiver.’
She helped me release the guilt that had kept me
from ever doing anything for myself
because I felt so badly for June.
Ever since then I spend part of my days
taking care of June
and part of my days taking care of me.
I love June and I know she loves me
and we’ll make this work
just as long as we can.
We’re fortunate we’ve found a way.”

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Mary is the mother
of 3-year-old Ben.
Two weeks ago he underwent
a 5-hour abdominal surgery.
At the end of his hospital stay,
a problem developed.
Ben was forced to endure two hours of excruciating pain,
while being held down by five hands—
what his father, Scott, described as
“abject (though medically necessary) torture.”
A couple of days later, with Ben now at home,
having five tubes and drains coming out of
different parts of his little body,
Mary went to get his prescriptions filled.
While waiting for these, she did some other shopping.
She wrote of her trip:
I went looking for PediaSure and Carnation Instant Breakfast drinks. I’ve been shopping at this store for seven years. I know where everything is. But I stood there paralyzed like a stone in a stream, moms rushing in a current all around me filling their carts, and I could not remember where those two things might be. Then I started crying. It was pathetic. I was trying to read the signs above the aisles, then I forgot what I was looking for altogether. Ugh.”

Mary is learning these weeks how stressful
caregiving can be.
Any of us may be learning the same thing,
or we may have learned it long before now.
Our stress may come as a result
of our feeling terribly upset, even alarmed,
about what the one in our care must endure.
We may feel overwhelmed by our responsibilities,
wondering if we can do what’s asked of us.
We may feel utterly exhausted
by what we’ve been through,
by what we’re continuing to go through.
At the same time, if we’re like Mary
(and I believe most of us are),
we may carry on bravely,
acting like everything is going pretty well,
not fully aware of how stressed we are.
Until we’re standing in the supermarket
and we start sobbing.
Or until we snap at someone
who has really done nothing wrong.
Or until we suffer a horrendous headache
that refuses to go away.
Whether or not we recognize we’re stressed,
our stresses will make themselves known,
one way or another.
That’s how stress works, in all of us.
Stress wants an avenue of expression and,
more than that, deserves an avenue of expression.
Even in the middle of an aisle
at the nearby grocery store.

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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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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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