Archive for the ‘Caregiver Truths’ Category

Like Snow

January 26, 2015

Swerve Often

January 7, 2015

Beautiful Music: A Thought for Caregivers

November 13, 2014

Halo

October 6, 2008

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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Grieve

August 26, 2008

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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Minuet

August 21, 2008

I spent the day
with good friends.
He has Parkinson’s.
She’s the caregiver.
It’s been a long,
trying journey for both.
He is different than when we met 38 years ago,
when we became colleagues,
as he became my mentor.
Today he’s both here and not quite here,
aware and not entirely aware.
It was hard for me to see.
Yet it was still a meaningful day
and I’m glad I went.
I was so impressed as I watched
the evolving relationship of this couple.
She would say gently, kindly,
“Maybe you’ll enjoy walking with Jim
to lunch rather than driving.
It’s such a beautiful day.”
She knew he couldn’t drive,
that he’d make an effort to do so,
and that he didn’t always remember
that driving is now out of the question.
He nodded, and we enjoyed our walk
in the bright sunshine.
“You can lie back on the couch,”
she said to him after we returned.
“It’s just fine; Jim won’t mind.”
So he sporadically dozed,
feeling free to do so in my presence.
Twice she handed him tissues, quietly,
almost unnoticed, without his asking.
A runny nose is characteristic of the disease.
On the long drive home
a word came into my mind: minuet.
A dance between two, and only two, people.
It’s a slow dance, in 3/4 time.
It’s performed thoughtfully, carefully,
yet it unfolds smoothly, naturally.
It’s an art form,
graceful and flowing in its appearance.

Caregiving is often like a minuet.
Two people dance closely together,
with steps that may appear simple
but can be rather complex.
They move, not with the rest of the world,
but in 3/4 time.
They communicate without always using words.
They glide in tandem, each seeking synchrony
with the other’s rhythm.
It takes real effort, and much practice,
and great sensitivity on the part of each.
The minuet of caregiving also takes this: love.
As I drove home, I felt blessed
to have been in the presence
of this couple I so respect.
Their dance is lovely,
and more than lovely.

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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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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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