From one caregiver to another.

You will stumble, you will fail at times, you will cry and grieve what you once had. But you will also excel in something so complex that only you are the expert.

You will soar and sing praises when mountains are moved, you see their smiles, and have those precious good days. And you will become the advocate you never knew you were.

Jan van ’t Hoff — Gospel images

From me to you, you are doing the hardest job in the world.

I am a parent and a caregiver to my disabled adult daughter. There is a difference between the struggles and frustrations that come with being a parent versus those of a parent caregiver.

At some point, we all believe our children will leave the nest. They will go their own way independently of their parents and make a life in this world. No more scheduling their doctor’s appointments, making sure their homework is done, or doing their laundry.

Being a caregiver can be a whole other type of hell.

If you’ve been one or are one, you know exactly what I mean. Your life is forever intertwined with the person you are caring for. Your mind does not rest because it’s always in caregiver mode. Even if you get the chance to get away for the evening, your role never clocks out; you’re either keeping an eye on your phone, having random thoughts of them throughout your evening, and inevitably, at some point, the person you’re caring for is brought up in conversation.

The role never leaves you, it becomes you; you don’t become it.

I have been my daughter's primary (and for a long time, only) caregiver for 12 years, when everything changed for her in an instant when she was 11. I have no career to speak of, no finished college degree, a very sad 401(k) that I try to contribute to, no sick days, vacation days, weekends off, and not even earned credits towards my social security if I get the chance to retire.

Man, do I miss the excitement of Fridays!

When I knew I had two full days to sleep in, chill, and take a break. I get sad over that when I think about it. I haven’t had a Friday in 12 years.

I know I could have stepped away from this role and not taken it on. I’ve seen it done before, but I love my daughter with everything I have; those job perks above I leave to the Lord. He put us together for a reason, and I trust His reasoning for that, but wow, some days I do get frustrated, sad, and exhausted.

I am forever thankful for God’s grace and patience, and knowing He goes beyond just loving me on my worst days, to carrying the burden of this role that can weigh me down, and providing me the restful peace I need amongst the darkness of compassion fatigue and overstimulation.

Many people surround me, and I’m sure you’ve had the same throughout your time as a caregiver. However, as caregivers, we also understand that the ones who surround us do not understand those weights in the same way as we do.

It is an experience that is uniquely ours.

You know it’s ok not to be ok at times, right?

At one point, the stress of being a caregiver got so bad that I broke down. Everyone around me seemed so willing to “help,” but all they wanted was to stay and chat, then they’d leave the moment something happened with my daughter. Leaving me crushed, hurt, and broken.

Everyone who was with me when things started to get bad for my daughter did this. They left everything on my shoulders and a few loved to toot their horn about being a caregiver when in fact they did nothing.

When I say I broke, I mean I broke. I sought out medical help and was admitted to the hospital. I lashed out at people after that, not cruelly or maliciously, but I did chew some serious butt. I started calling them out for what they were doing, I fought back, and I demanded better. I also distanced myself from the ones who saw no wrong in their behavior and only brought their drama over to our home.

No one saw me. They saw what they wanted, which was the person who took care of everything for my daughter.

It was easy peasy for them because they didn’t have to lift a finger. I wasn’t a person anymore, I was a handy commodity. I still feel that way sometimes now, when certain situations arise, but I’ve since fought back and have been starting to reclaim parts of my life again.

How do you reclaim your life when it’s intertwined with another’s?

The answer is you don’t, you never will be able to. But you can carve out chunks here and there and build on those. That’s what I had to learn to do for myself, and what I had to fight for. I need those chunks, those are my Fridays now. The moments I look forward to. That’s how I reclaimed a life for myself, and a new path was forged by God.

My days will never be what they once were, or what they could have been. But my days now are so much better because I am no longer afraid to cry, and say “not today”, I’m not afraid to say I need someone else to take care of their own life, and I’m absolutely not afraid to give it to God and lean on Him to take a breath. That is the most beautiful gift He has given me.

I am more than a caregiver.

I put up a healthy wall, built a new foundation for myself with God’s help, and put people in their place if they try and take advantage. I tell my family now what I need when I’m struggling, even if it means leaving things messy or ignoring calls.

I may be a caregiver, but I am more than that, and so are you. We are people with wishes, wants, and dreams that got sidelined in a way few understand, a sideline that will forever become a part of who we are now because our lives are wholly entwined with another person’s life.

But we are more than caregivers; we are unique, loved, and worthy of forging a new path with God.

© Jane Isley

First Published in Never Stop Writing on Medium.

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