What does caregiving look like?

Recently, I began reading a new caregiver’s devotional. Everything I have read so far has been very insightful. (See the Amazon link below.) While reading, I realized that this book echoes so many of the things I have been saying and still want to say to you.

There are opportunities for me to grow in my understanding of caregiving even after our son, Robert, has passed away. Call it healing, therapy, or whatever seems appropriate to you, but I take deep dives into the caregiving world because 18 years of my life were spent immersed in that world. This month, I am celebrating National Family Caregiver Month as a mom who knows what caregiving looks like!

Caregiving is not usually a role to which one aspires. For me, it was not a position I sought because I had done so much research on the opportunity and could not wait for my new job to start! On the contrary, most of us were suddenly introduced to our new “home office” by a loving child, young adult or seasoned adult who was special to us. Or perhaps we did sign up for this occupation because it became our passion to care for others. However you come to such a place, you will encounter at least these three things: shock, weariness and unspeakable emotions; and your life may look similar to mine.

I was shocked when I saw what I thought was Robert’s very first seizure. As November is also National Epilepsy Awareness Month, I remember how little knowledge and awareness I had when he was just 2 years old. There was no warning. Seated in his car seat next to his twin sister, Victoria, in our SUV, he just suddenly began to shake violently with every part of his body. It was rhythmic. It was unnatural. It was scary and shocking as I rushed to pull my large vehicle off the highway.

If you have never witnessed a seizure, you may not be able to imagine what I saw in my rearview mirror that day. But I am sure you can understand how shocking that scene was. It was the beginning of my journey to becoming “aware” as Robert’s mom but also a new caregiver. An invitation was not mailed, emailed, delivered or texted to me. The journey just began in my driver’s seat and on the side of the road, parked and stunned. I was stunned that I was there.

Throughout the years that passed in my caregiving journey, I also periodically became very weary. Now, that is not news to anyone who has been or is a caregiver. Our bodies need rest! Our muscles ache a lot because of the lifting, twisting and the pace at which we move. But I’m also referring to the kind of weariness that takes away your hope and recognition of yourself — a deep loss of the will to go on. It is so much deeper than sadness. Many times, it is the kind of weariness that makes one feel dead inside, like you dug a hole for yourself, and you just want to crawl into it … that kind of weariness. One would think this fatigue would be easily recognizable, but it is not. We hide from those who are not caregivers. We choose to put on a “confident face” so that we do not have to show you the “discouraged face.” As it is said, “No one likes a party-pooper!”

Frankly, we are often too tired to even show up even on the best days. Caregiving calls us from every room where our loved ones and patients dwell. We need to be seen and counted, but sometimes a twenty-minute nap may be our only healthy choice. Caregiving for ourselves is rare. That’s what weariness looks like — a daily choice to choose another human first, over our own lives. When you see someone who doesn’t get out in the community or turns you down because of their caregiving duties, you should rightly assume that they are weary and need a break.

With all the godly advice I could share, I know that sometimes even the best insight will not touch the unspeakable emotions swirling around in the heart of a caregiver. The silent prayers lifted by caregivers are raw and full of real anguish and questions.

Why did you choose me?

What good can possibly come of all of this?

How do I trust that I will be strong enough?

When and how will this end?

Despite these questions filled with doubt, I offer these descriptions of a caregiver‘s responsibilities. They may be filled with unspeakable emotions, but most caregivers I have known are compassionate humans who care for a family member’s basic needs, provide medications and companionship, and learn to assist with mobility. I had to learn how to feed and bathe Robert (at 6-feet-tall); change a G-tube; learn the efficacy of multiple new medications every few months; transfer him from his wheelchair safely to new equipment and locations; and, ultimately, how to ask all the questions and be satisfied if I never received clear understanding. Like I said, unspeakable emotions.

As you journey through this month, please take the time to see the caregivers around you. They need to be acknowledged and cared for, too.

“Hope for Caregivers: A 42-Day Devotional in Company with Henri J. M. Nouwen”

Buy on Amazon here: https://amzn.to/3FYd3xA

Listening Library: A Safe Place to Land (Live at the Village) Sara Bareilles ft. John Legend

https://youtu.be/Ht2NCrlghS4

“Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.” (Proverbs 31:8-9 NIV)

A Safe Place to Land

When holding your breath is safer than breathing
When letting go is braver than keeping
When innocent words turn to lies
And you can't hide by closing your eyes

When pain is all that they offer
Like the kiss from the lips of a monster
You know the famine so well, but never met the feast
When home is the belly of a beast

The ocean is wild and over your head
And the boat beneath you is sinking
Don't need room for your bags, hope is all that you have
So say the Lord's Prayer twice, hold your babies tight
Surely someone will reach out a hand
And show you a safe place to land

Oh, imagine yourself in a building
Up in flames, being told to stand still
The window's wide open, this is leap is on faith
You don't know who will catch you, but maybe somebody will

Be the hand of a hopeful stranger

Little scared, but you're strong enough
Be the light in the dark of this danger
'Til the sun comes up
Be the hand of a hopeful stranger
Little scared but you're strong enough
Be the light in the dark of this danger
'Til the sun comes up

Be the hand of a hopeful stranger
You're scared but you're strong enough
Be the light in the dark of this danger
'Til the sun comes up

'Til the sun comes up (Oh)
'Til the sun comes up ('Til the sun)
'Til the sun comes up (Ooh)
'Til the sun ('Til the sun)
Comes up

Songwriters: Lori McKenna / Sara Bareilles

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