What Caregiving Has Taught Me

“The older I become, the more comfortable I am with mystery.”

Maj. Gen. (Ret) Robert C. Gaskill, Sr.

I watched from a distance as my younger sister and only brother took on the primary caregiving for our dad. My older sister and I could only fly home to help periodically. It was a beautiful sight to behold. My siblings back home did a heroes’ job of lifting, changing, and showing incredible love and respect. It is what caregiving is truly all about. It’s the kind of love that takes another human being into your arms and puts your needs aside so that the person being cared for is the focus. A priceless gift in your life if you are so called to do so.

However, that journey with my father was different from the care for our son, Robert, whom we cared for in our home. As I am reflecting on all of the gifts in my life during this 2024 holiday season, I am eternally grateful for the helping hands of nurses and therapists who showed up in our home consistently putting their own needs aside in an effort to support our family in giving Robert a quality of life beyond our capacity. It was a struggle on some days to see the beauty of caregiving because it required a selflessness that really only surfaced to the top of our busy lives when it was ultimately required. But make no mistake, caregiving is a moving sacrifice to observe and experience for yourself. True selflessness is born out of deep moments of care.

This journey is not unique to me! Most of us will experience some type of caregiving responsibility in our lifetimes. It may be a child, sibling, aunt or uncle, a cousin or a parent who may require our routine to be altered for their care. If you have not taken on the professional responsibility to care for others like my husband, Dr. Chris, you may still find yourself at that door one day. Before we cared for Robert for eighteen years with his rare mitochondrial disease, I looked into others’ lives as they were caregiving, my face pressed against glass windows looking in to observe from the outside. But my life has changed. I am now the one whom others have watched. As I come to almost ten years in February 2025 of laying Robert to rest, I hope I have shown compassionate care during his lifetime, and also in the years that have followed as an advocate for caregivers and those with disabilities.

These are the things I know to be true in the life of this caregiver:

1. I didn’t always do it “right” in everyone’s eyes, but I know Robert knew how much I loved him and advocated for him to the best of my ability.

2. “Finding” myself again after Robert’s passing was very hard as I was no longer needed in that role, and I actually liked being needed by him. Odd, I know, but it was similar to being fired from a stressful job I had grown to love so deeply. I didn’t ask to be fired, nor did I resign.

3. Caregiving has made me a stronger woman, even though it showed me every weakness in my soul and in my faith journey.

4. God is still binding me back up together and teaching me to trust His purpose for my life. I am sure I am not an easy follower! I walk a rough road filled with doubts and uncertainties. Yet, I have found Him to be faithful in meeting me where I am each day.

These thoughts may be too much for you, however I have decided that caregiving should be a part of crucial conversations that we embrace.

If you are in the midst of caregiving and you need a listening ear, I am here for you. If you are the person who has already traveled this road, please send me your thoughts on what you have learned. I plan on participating in discussions around caregiving and disabilities for the rest of my life. I hope you will join me in making the caregiving community one that we recognize and support.

I am attaching a previous blog post, Caregiving, that outlines some additional truths I have learned. I hope it helps you on your journey. Click here to read now.

Get comfortable with mystery, my friend.

Listening Library: “Mystery” (Sara Groves)

https://youtu.be/rdPn-0gxBP8?si=biE145PfKnO390cK

Mystery

I see my faith before meIt's always there before

And I can no more own it

Than I can own the road that I’m on

And I don't know where it leads me

I don't know where it leads me

Peace and resurrection

Suffering and dejection

I don't know

My body's tired from trying to bring you here

My brow is furrowed trying to see things clear

So I'll turn my back to the black

And fall

And wait for the mystery

To rise up and meet me

There are as many takers

As there are hearts to take it

There are so many fakers

I myself have faked it

I should know

Sometimes this has left me

Groping in the darkness

Hoping in the darkness

I will run into you again

My body's tired from trying to bring you here

My brow is furrowed trying to see things clear

So I'll turn my back to the black

And fall

And wait for the mystery

To rise up and meet me

Oh, Oh, Oh

My body's tired from trying to bring you here

My brow is furrowed trying to see things clear

So I'll turn my back to the black

And fall

Pray for the mystery

To rise up and meet me

Oh I’ll wait for your mystery

To rise up and lead me home

Songwriter: Sara Groves

Mystery lyrics © Music Services, Inc