written by
Andrea Schell

CAREGIVER CORNER- Today’s Piece is written by Kelsey, a daughter, and caregiver of an ALS Warrior

Story 3 min read , November 17, 2021
Kelsey, a daughter, and caregiver of an ALS Warrior

My name is Kelsey, I was one of the two main caregivers for my dad Donald, who was diagnosed with ALS (Lou Gehrig's Disease) at the young age of 59.

Caregiving taught me a lot, along with taught me a lot about myself. I would never wish for another child to ever have to be in my situation of having to care for a terminally ill parent only to know the end outcome will be death.

It wasn't easy, loss of sleep, tears, later being diagnosed with anxiety and becoming medicated. Caregiving taught me it takes a lot. A lot of strength mentally to get through it. Learning to hide emotions because I didn't want my dad to think he was a burden or just how sad the whole situation made me.

Caregiving isn't just saying I'm here if you need me. Let me know what I can do for you. It's going ahead and just doing things that need to be done. Not relying on other people cause they'd end up proving they weren't really there. It was learning how to set up a port IV for medical infusions, and pushing medication so he wouldn't form a blood clot. It was watching him lay in a bed after a botched attempt to get a feeding tube only to learn the doctors didn't listen after advocating for days on end he couldn't be laid flat and him almost dying. It was learning to become good at charades because after he finally woke up he could barely talk. Only to go on and have his speech decline as a symptom of ALS. It was learning how to do tube feeding and flush the tube afterward.

By the time I was 26 I knew how to do more medically for one person than I ever knew I would.

Caregiving is hard, it changes you, it changes how you see life, it changes how to spend your time, and who you spend your time with.

Caregiving changed me and taught me so much. If I was told the same news I'd do this again in a heartbeat. It allowed me to care for my dad after he cared for me my whole life. It allowed me to see him every day of his last 11 months alive. It allowed me to feel like I was able to do as much as I could for him till his final moments. I have been able to live after his death knowing I was there for him. I helped care for him, and in the very end tried my hardest to save him, after attempting CPR on him upon finding him breathless, only to realize after 2 rounds he was too far gone to be saved.

Caregiving made me appreciate life while watching the life being taken from another person. It made me realize it's not about money and what you have.

But about happiness.

I quit finishing my degree because I didn't like school, I switched jobs because I wasn't happy. It helped me realize life is short and you need to spend your time for you. I gave up things to be a caregiver. And I would give them up again, in a heartbeat if it meant one more day with my dad.

The thing is at the beginning of caregiving you’re not told. You’re not told you’ll lose friends, you’ll lose family, and you’ll even lose yourself. More than likely you’ll lose yourself more than once.

But somehow, someway when you’re done caregiving you find yourself again.

A bit stronger,

a bit more empathetic,

a bit more blunt,

and changed a whole lot.

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