Archive for the ‘Caregiving & Feelings’ Category

Caregiver Care

December 3, 2007

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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Thankful

November 21, 2007

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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Help: The Depression Series III

November 19, 2007

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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Carried

November 16, 2007

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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Variations: The Depression Series II

November 12, 2007

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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Chore

October 22, 2007

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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Beyond Exhausted: The Stress Series III

October 5, 2007

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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Ugh: The Stress Series I

October 1, 2007

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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