Archive for the ‘Caregiving’ Category

Voice

October 6, 2017

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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Gone

April 8, 2017

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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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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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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Slow III

March 17, 2008

I’ve been advocating
Slow Caregiving.
I see this approach
as much an attitude
as it is a speed.
It’s a decision
to always keep the care receiver’s needs
in clear focus.
In an interview in The Washington Post yesterday,
travel expert Rick Steves described
the culture in Italian restaurants.
“Slow service,” he said, “is good service.”
How is that so?
It’s their way of showing
they respect you, they like you.
“Please feel free to stay all night”
is what they’re communicating.
Unlike most American restaurants,
where it’s frowned upon to linger too long,
the Italian attitude is,
“Take whatever time you wish.
It is, after all, your meal.”
Carl Honore makes this distinction
in his book In Praise of Slowness:
“Fast is busy, controlling, aggressive, hurried, analytical, stressed, superficial, impatient, active, quantity-over-quality. Slow is the opposite: calm, careful, receptive, still, intuitive, unhurried, patient, reflective, quality-over-quantity. It is about making real and meaningful connections—with people, culture, food, everything. The paradox is that Slow does not always mean slow.”

Slow Caregiving means bring receptive
to what’s ultimately right for the care receiver.
Maybe they’d like certain things
to happen more quickly.
Slow Caregiving says, “We’ll try that.”
Maybe they’d like time to interact,
to talk, to reminisce, to linger.
Slow Caregiving says, “Let’s tarry here.”
Maybe there’s an emergency.
Slow Caregiving says, “Let’s hustle now!
Time is of the essence!”
Then a Slow Caregiver rushes ahead
with, as much as possible,
a Slow frame of mind—
intuitively, assuredly, calmly,
and with great caring.

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Respite IV

March 3, 2008

Apart and together.
That’s what helps.
All caregivers need,
and certainly deserve,
a break from duties.
Time apart.
The chance to rest, refresh, refill.
If we number more than one,
then our caregiving team will benefit
from having time apart together.
Then we can relate as unique individuals,
not just as fellow caregivers.
We can do things with each other
unrelated to our caregiving duties.
If we talk about our caring responsibilities,
we can do so privately, leisurely,
perhaps more candidly.
We can become more united
in what we’re doing,
more clear, more sure,
maybe more dedicated.
These are not empty words.
My siblings and I just spent fours days
at our brother Tony’s wonderful place
by the ocean in Florida.
Dad wasn’t with us,
and yet he somehow was.
We missed him,
and it was also important
to have some time without him.
Today we return to our homes
rested,
refreshed,
refilled.

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Respite II

February 25, 2008

David’s wife, Carol,
is chronically ill.
She’ll never get better.
David watches over her
day in, day out.
A neighbor once said,
“Just ask if there is anything I can do.”
David immediately responded, “I’m asking.”
“What is it you need?”
“Someone to be with Carol a few hours
every now and again,
so I can do things on my own.”
The neighbor happily agreed,
pleased to know exactly what would help.
David happily accepted her offer.
And Carol happily has social visits
from her neighbor and friend,
times she can look forward to.

Caregiver respite takes many forms.
People might come into our home,
or our care receiver might go to another’s home,
or perhaps to an adult day care center.
Arrangements might be made for full-time care
in an accredited facility
for a specified period of time.
Family members can provide respite care,
as can friends and neighbors,
colleagues and community volunteers,
as well as professionals of various sorts.
However respite care is handled,
research shows that it’s most beneficial
if it meets several criteria.
It’s best when the respite is regular—
a time the caregiver can plan for
and look forward to.
Each respite should provide enough time
to do something the caregiver wants to do;
a quick break is usually not enough.
The respite time should be geared
to the caregiver’s needs and desires—
the ideal timing, frequency, duration, and location
will vary from person to person.
It’s most beneficial if the caregiver
plans the use of the time in advance,
even if the plan is “I’m going to read
my favorite author’s latest novel.”
Whether the respite time is spent
in great activity or comparative inactivity,
the benefits readily add up
and healthy caregiving is naturally supported.

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