Archive for the ‘Caregiving & Feelings’ Category

To Serve: A 29-Second Video Thought

January 20, 2016

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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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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Target

April 17, 2008

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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Web

April 3, 2008

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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Away

March 31, 2008

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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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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