Dear Fellow Caregivers

Nicole standing with fellow caregiver Danielle and young girl. All of them are smiling.

Dear Fellow Caregivers,

Recently, I wrote these words for myself and perhaps for you. I wrote them through tears of frustration after feeling defeated. Writing helps me sort some of my stuff out. The things I can’t explain in conversation, I might be able to express in writing.

These words are part of my caregiving truth. Even though they are messy and imperfect, they are full of love. For you. For me. For the caregivers dealing with moments they can’t bring themselves to share, or those who want to cry, but find their tears have run dry.

There are days
when caregiving
will be
harder than hard.
And there are days
when it will be
easier,
but not easy.

There are days
you will
lean into love
you didn’t know possible.
And days
when your love
becomes
a tangled mess.
Worse than the
Christmas tree lights
found in your
Grandmother’s attic,
that still light up
but are tied in
unforgiving knots
refusing to be released.

There are days of
calm,
and days of
chaos.
You try to be
in control.
But often
everything spins out
and you realize
how little of your world
you actually
regulate.

There are moments of
curiosity,
discovery
and awe.
Moments you witness,
healing,
mercy and grace.
But there are also
moments
of intense disparity.

Sometimes you are a
participant
and others a bystander,
often both.
As if you are
watching the tide
come in and
sweep away
the memories of building
castles in the sand,
with your
beloved child.

The tide doesn’t
wash away every grain,
yet in your grief
you imagine it all
to be gone.
You feel as if
you have been left,
with nothing
but the hollow shell
and bones
of a person
once so familiar.
This person is not
only your survivor
but also yourself.

There are moments of
fear,
then joy.
Moments of tenderness,
followed
by fits of rage.
Depending on the hour
of day,
you are the best friend
or the worst enemy.

At times you feel it, too.
The rage.
The anger.
At the injury,
and the way it keeps
pushing back
and holding
you down.

For you it is different.
Your emotions
are tempered
with compassion.
You are aware.
Anger harms,
it doesn’t heal.
But sometimes the
anger is a tidal wave,
rolling through your soul.
refusing to
be ignored.

Your loved one yells,
“Why did this happen to me?”
And you feel the same words
Screaming through your soul.
You feel-
Punished.
Abandoned.
Forsaken.

People say,
“You are
inspiring.
Brave.
Strong.”
You experience all of
those traits within
your being.
Each one is
present.
And yet,
behind the veil
of all of the
courage you possess
there is
a tired
person,
giving care
battling emotions
and fatigue
day after day.
Wondering
if anyone notices
the pain.

If you find yourself reading these words, I hope you can hear this…somewhere under the same moon is another caregiver, reaching out with compassion for you.

Cheering you on, and reminding myself that you are cheering for me, too.

Nicole

Comments (12)

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You are a beautiful writer. Thanks for sharing this post. My heart goes out to you in love.

Thank you, Stacey. Reading your words today brought some light to my soul. ~ Nicole

Thank you Nicole for so eloquently and gracefully putting into words the new life I entered into 3 years ago with my miracle son.

Hi Kathy, you are most welcome. With love. ~ Nicole

Thank you. It’s spot on. ❤️

You are most welcome. Thanks for reading.

Thank you for this. Every word hit home.

Yep, you nailed it.

Thank you for that beautiful poem. Every single word is true. It is comforting to know I’m not alone. I just wish my son wasn’t so alone.

I feel the same way. I am so sorry.

This made me ugly cry in a really good, nodding and affirming way. Thank you for so eloquently acknowledging the bond we all share through brain injury.

Thank you for your words. it made me cry! This is exactly how I fill sometimes. God bless!