Archive for the ‘Caregiving’ Category

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Hero

October 30, 2008

Shannon has pancreatitis.
It was caused
by a genetic defect.
It started 6 years ago
when she was 27.
Always healthy and adventuresome
when she was younger,
her life has now taken an unwanted turn.
First there is the abdominal pain.
It strikes without warning, a couple of times a month,
lasting hours on end.
When it first happened,
she thought she was dying.
Now she knows she won’t die,
but sometimes she says she wishes she could—
the pain is that excruciating.
All she can do is increase her pain medication,
curl up in a ball, and wait it out.
Extreme nausea has become her way of life—
most every morning, most every evening.
Sometimes the nausea strikes unpredictably, embarrassingly,
wherever she is, whatever she’s doing.
Daily she must conserve her energy carefully.
Indeed, she will always have to—
she has been told her condition cannot improve.

Shannon has become a friend of mine.
I watch her carry on day after day
with true grit, with remarkable resilience,
with persistent courage.
Her efforts, every single day,
are nothing less than heroic.

In this space that’s dedicated to the issues
of being a caregiver to family or friends,
Shannon is an important reminder to us.
It’s true that caregiving can be demanding.
It’s true there may be something of the heroic
in how some of us caregivers live out our roles.
But we dare not forget that sometimes, if not often,
the one in our care is engaged in a battle
that is even more heroic.
They may grapple with unceasing pain,
or unnerving fear, or unrelenting depression.
They may be forced to deal with symptoms
that are fatiguing, or alarming, or humiliating.
They may be adjusting to diseases or conditions
that limit not only the quality of their lives
but even the length their lives.
Such individuals are examples of heroism personified.
We dare not forget that.

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Circle

October 16, 2008

A letter from me
is on page two
of Willowgreen’s catalog,
mailed last week.
It includes a photo
of four generations.
This is some of what I wrote:

“The image you see here holds many associations for me. The baby is Grayson James, my grandson and namesake. We waited years for him to arrive. We came close to thinking he would never come to be. My daughter Christen holds Grayson. She’s a hospice chaplain. Last year she co-authored Willowgreen’s small book This Time of Caregiving with me. The older man is my father. He lived with my wife and me for a while. Recently he was in and out of various levels of nursing home care between hospitalizations….
“Caregiving circles around and around in this picture. I cared for Dad extensively in his final years. During the same period I cared excitedly for Grayson in his early years. Christen and I both do professional caregiving among our other duties, while being caring with one another as occasions call for it. Last year I underwent surgery myself and most everyone in our family cared for me as I healed, including Dad.
“I believe our family is as ordinary as anyone’s, which means that caregiving commonly happens on and off through the years. Caregiving occurs between generations and within the same generation. It occurs at expected times and unexpected times, in ways we can plan for and in ways we could never predict. Oh, the experiences we’ve had in our family!”

I believe our family’s truth
is the truth of most families:
caregiving encircles us, endlessly.
While it may appear to start and stop,
from that larger perspective
it loops around and around,
tying us together in rings of love
and comfort and hope
and every feeling imaginable.
Caregiving was there long before us
and it will continue its orbit
long after us.
We are privileged to take our place
in that gigantic, looping, circling universe.
Fortunate are those who can sense that privilege
amidst whatever it is our caregiving
may ask of us.

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End

August 18, 2008

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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Posted in Caregiver Truths, Caregiving, Caregiving & Feelings | Leave a Comment »

Voice

May 6, 2008

Dad moved into
skilled care Friday.
This may be temporary,
but probably it’s not.
He’s getting continually weaker.
His moments of real clarity
occur less frequently.
My sister Patty came from Colorado to see Dad,
not knowing she would be spending her time
overseeing this transition.
The doctor had ordered a diagnostic procedure
during Dad’s hospitalization,
but Dad’s blood was too thin at the time.
The procedure is painful and a little risky,
especially for an 88-year-old.
Dad was to be brought back in this week,
so the procedure could be done as an outpatient.
At one point Patty asked the physician,
“If he were your father,
would you proceed with this test?”
The doctor paused, then said, “Probably not.”
“Then please remove his name from the schedule,”
Patty said. “He’ll go without it.”
When aides were not putting up guard rails
on Dad’s bed, Patty said,
“It’s important to raise those rails each time,
otherwise he’ll fall again.”
These are only two of many examples
of how Patty has spoken up for Dad this week.
As his energy has waned and his voice has weakened,
she has stood tall beside him
and said what he was unable to say
or did not know how to say.

Being the voice for the one in our care
can be one of our most important tasks.
When doctors move and talk rapidly, we can say,
“Please repeat that more slowly
so we both can understand you.”
When complex medical procedures are proposed,
we can ask about risks and benefits, saying,
“After we talk this over in private,
I’ll tell you what my care receiver wants.”
When the one in our care is ill-equipped
to speak their concerns or state their case,
we can be their sound voice for them,
speaking their truth with authority.
If we don’t do that, then who will?
If we don’t serve as their advocates,
who else will step forward?

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Posted in Caregiver Truths, Caregiving, Long Distance Caring | 2 Comments »

Gone

April 8, 2008

I’m gone for several days, photographing springtime in the Charleston, South Carolina area, looking for some visual themes for future entries here. I’ll return to writing The Thoughtful Caregiver on Thursday, April 17. In the meantime, I wish you thoughtfulness.

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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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Posted in Caregiver Truths, Caregiving, Caregiving & Feelings, Validation | Leave a Comment »

Watching Over II

March 24, 2008

I spent Saturday
with Dad.
He had forgotten
I was coming,
tho I had reminded him
ninety minutes before.
He was already in the dining room,
eating with his friend Virgil,
so I joined them.
The talk was of being a foot soldier
in France and Belgium in World War II.
Later Dad and I hung out in his apartment,
doing some random chores.
Mostly we chatted.
I organized the currency in his wallet,
since he now has a difficult time of it
when it comes to counting money.
Late in the afternoon the sun came out,
so we decided to take a short walk
in the 30-degree springtime air.
We Millers call this “getting out a bit
to blow the stink off.”
I zipped up Dad’s winter coat
and helped him with his gloves,
before I donned my insulated jacket.
Then we ambled outside.
Less than a minute into our walk,
he turned to me and asked,
“Are you warm enough in that coat?”
“Yes, Dad, quite warm.”
He nodded.
We took a few more steps
before he stopped again.
“Now, you’re wearing gloves, aren’t you?”
“Yes, Dad, I am. Leather ones, like yours.”
He nodded again.
A few more steps.
“You’re okay without a hat?”
“I’m fine, Dad—I seldom wear one.”
He studied my balding head.
“I just don’t want you to be cold.”

I’m Dad’s 62-year-old little boy.
He still wants to protect me,
tho he can barely protect himself anymore.
He wants to guide me
in that quiet, loving way that is his,
tho he requires guidance himself at every turn.
He’s still watching over me,
while I am learning to watch over him.
I assume it will be that way
for quite a long time.
As in, eternity.

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Posted in Caregiver Truths, Caregiving, Caregiving Lessons | 1 Comment »

Watching Over

March 20, 2008

My daughter Christen
is a hospice chaplain.
Recently she told me
about a patient of hers.
(I’ve changed the name
to assure confidentiality.)
Though Amanda is in her twenties,
she has the mind of a six-year-old.
She is dying, and she knows it.
Christen paid her regular visit last week.
She looked slowly through the scrapbook
Amanda has been making about her life.
They talked of the many memories
all the photographs held.
Amanda was not feeling well that day,
so Christen drew the blinds,
pulled a quilt over Amanda’s feet,
and began to sing to her quietly.
“He’s Got the Whole World in His Hands.”
“Jesus Loves the Little Children.”
“This Little Light of Mine.”
After the last song, Amanda raised up,
grabbed a notebook and said with insistence,
“Chaplain, we need to make a list.”
Amanda cannot write,
so she dictated her list to Christen.
“Put at the top,
‘Things Amanda Wants When She’s Too Sick to Talk.’”
Christen wrote.
“Number one.
I want you to talk to my mom.
She’s going to be really sad.”
Christen took it down, word for word.
“Number two.
I want you to sing that light song.”
That was the end of Amanda’s list.
Amanda inspected Christen’s handwriting,
repeatedly folded the page until it was a tiny cube,
and gave it to Christen for safekeeping.
“Now you won’t forget, will you, chaplain?
Especially the part about my mom?”
“No,” Christen assured her, “I won’t forget.”

Amanda reminds all of us:
our care receivers are often
quite good at caregiving too.
Sometimes they’re watching over us
without our even knowing it,
just like Amanda is watching over her mom.

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