Writing While Caregiving (and Clocking In)

Most times, the words come between med schedules and a 9 to 5

The below post is a personal account of how AyDee writes while working a full-time job and being one of three co-caregivers, in her own words.

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Last week, I published a note with the title of a post that I hope I get to write someday: “I left my Corporate Hell Job to write full-time.”

I work for a company that saves lives multiple times a day—emergency air transport. It’s far from the job I would jump out of bed for and definitely doesn’t make my heart sing.

It’s a job where I subtly changed my hours when I became one of three co-caregivers to a parent with dementia. My Mom was officially diagnosed in 2021 and as her health continued to decline on what seemed like a weekly basis, we all—me, Dad, my older sister--struggled to adjust to this new normal.

A new normal that involves living in a past where her mother, younger sister, and stepfather are still alive.

A new normal where she where she can barely raise her head and no longer walk without assistance.

A new normal where sometimes it takes 20 seconds or more to get a response from asking a question.

A new normal where she sees and talks to people we don’t see.

I think my Dad struggles the most, as he’s slowly losing the love of his life. There’s 60 years of memories there.

The experts don’t tell you that you will go through the five stages of grief.

That they really don’t end.

That they come in waves.

More often than you’ll ever want them to.

And they spiral into other feelings that take you down into a black void.

Yeah, I know all about black voids.

Stranger Things is one of my favorite shows on Netflix. If you’re familiar with the show, then you know about the Upside Down.

This place looks scary as fuck

It’s an alternate dimension that mirrors our world — or at least our world if it was a toxic hellscape overrun with creepy, moving vines, is constantly experiencing electrical storms, and filled with murderous creatures linked together in a hive mind system like this Venus Flytrap looking thing.

AKA Demogorgon (pic taken by me at the Stranger Things Experience/Las Vegas

This dimension is controlled by Vecna.

I don’t know who’s worse… Freddy or this dude (photo taken by me at the Stranger Things Experience/Las Vegas)

He feeds off your negative energy, uses it against you, and traps you in his world.

The pour souls that ended up getting pulled into this place never make it out alive.

Not Nancy’s friend.

Not Max’s brother, Billy.

Not that cheerleader who visited Eddie in his trailer.

Not Eddie himself (man, that was a sad loss).

And certainly not those jerkwad asshats from the basketball team (I wasn’t at all sad to see their Captain bite the dust).

But Will made it out alive.

Will was in this scorched hell for a week before his friends and a super-powered girl named Eleven rescued him.

He got lucky, even though he still felt connected to this evil creature.

Isn’t that the way of things? Once you’ve been touched by Darkness (maybe even lived through it), it never really leaves you, right?

Yeah.

I get it.

If fear, guilt, depression, sadness, resentment, anger, frustration, suicidal thoughts, helplessness, and desperation existed in a physical place… it would be the Upside Down.

And I’ve been a frequent visitor for a couple years now.

These visits would be triggered by Dad telling me Mom didn’t recognize him…again; Dad telling me Mom mistook him for her stepfather; Mom having a Crying Moment thinking Dad doesn’t love her anymore and is leaving her for another woman; Mom not remembering everyone on her side of the family is dead; Mom not recognizing me as her daughter and saying she has a son; Dad not getting enough sleep because she got up at 2am/3am/insert early-as-fuck-time here again…

Sadness, helplessness, and worry were constant emotions roiling under the surface. And there was Vecna, waiting in the background, reaching out with his tentacles and tap-tap-tapping me on the shoulder.

However, ever since my mom fell—twice in one day—three days after Christmas in 2023, it’s been Besties Night In with Ol’ Vecna pouring me glasses of Stella Rosa Peach and keeping a cocoon-like pod room open for me.

I’ve been wearing resentment like a trench coat with guilt wrapped around my neck like a scarf.

I resent that my life is no longer my own.

I resent that I had no energy to work on my side business.

I feel guilty for wishing she was bedridden, so we don’t have to deal with the lifting.

I feel guilty that I wish she was already gone because we’re all suffering, but she’s suffering the most. This slow, marathon decline is really taking its toll.

I feel tired and achy from all the heavy lifting and the use of unused muscles.

Sometimes I feel despair when I shake out 3 Advil Liquigels for the ache and stare a little too long at the remaining contents, contemplating, contemplating, contemplating…

I feel disconnected and detached from the woman who gave me life. I may verbally call her Mom, but in my mind, I refer to her by her given name. And sometimes I actually call her by her given name because she doesn’t respond to “Mom.”

I’m disappointed with myself because for the first time in my life, I’m eating my feelings (it could also be perimenopause). I’ve been trying to transition to a whole-food, plant-based diet since I was 50, but uprooting my life every other week makes it hard to start and be consistent.

I get irritated every time Dad says, “What are we gonna do about dinner?” or variations of that phrase.

I worry about how my sister and I are going to care for my Dad if this happens, because there is NO WAY we’ll be able to lift him.

After stopping and starting a side business three times, I had to take a step back and reevaluate the life situation.

The Co-Caregiving Situation

After the opportunity to move out of state with my job at the time fell through, I lived with my parents for two years.

Until I had to move out.

I felt trapped, with the heavy energy of sadness weighing me down. My creativity, my productivity, my spirit, was being leeched out of me.

I got my own place in June 2024, and while I love that I have my own space now, it’s still not…great.

Dad tried having a homecare person come in during the day, but it quickly got expensive (for the two days a week she was coming), so we had to pivot.

Sis and I now take turns living with them.

I have my own little 3rd floor studio apartment.

She lives with her two (adult) children, including her daughter’s boyfriend and 4yr old son. (We call them The Trio LOL).

But we tap each other in/out every Sunday around 5pm.

Sis works from home there Wed-Fri (whether or not it’s her Caregiver Week).

It takes me about three days to decompress after my Caregiver Week and the heaviness starts to settle in about 3pm on the Sunday I have to go back.

If Sis and I want to go somewhere—either together or apart—we have to ask Dad to make sure he can handle her for however long we’re gone.

The Corporate Hell Job Situation

When I first started at my job, my hours were 730am-430pm with a half hour lunch. Over time, I subtly changed it to 830am-5pm with a half hour lunch.

I’ve had to tell my supervisors—and co-workers—about my co-caregiving situation because I may be late due to Mom having a “bad night”.

Other than the two weeks I was given to WFH when Dad had surgery and couldn’t lift anything over 10lbs for 10 days, my job does not allow their employees to WFH. Even though the current members of my team work remotely in another state.

I feel guilty that I get more of a break than Sis and wish I could WFH at least one day to give her a little bit of a reprieve.

The Writing Situation

I’d been looking for a side hustle that would move me out of my Corp Hell Job and I thought proofreading was going to be that.

It wasn’t.

I had a short taste of what it would be like—and it was SO FABBITY-FAB—but I gave it up because I realized I couldn’t have a business with clients. I needed a clientless side hustle and until I figured out what that could be, I returned to something a I hadn’t done in 10 years.

Fiction writing.

But my writing situation when I was writing YA looks a helluva lot different now as I tackle new genres.

What hasn’t changed? Writing during my lunch breaks and my two fifteen minute breaks.

During my Home Week, I’m able to write in the evenings after work.

During my Caregiver Week, no writing gets done at all. By the time I get to my parents’ house, it’s 6pm. By the time I’m done with my “home routine”, it’s 630pm. We’re figuring out/eating dinner, she gets her bedtime meds at 9pm, and we try—try being the keyword, here—putting her to bed between 1045pm-1130pm. The main reason I can’t write there is the noise.

I need near silence to write. When Sis and I were young, we had to do our homework in silence. No distractions. And that carried over into adulthood—for me, anyway. There are too many distractions and interruptions at my parents’ house for me to concentrate. The most I can do over there is Substack posts, social media posts, and book research.

Once I understood what my limitations were, I was able to convey that to others.

I’m not going to be the writer who can write two books a year. And I’m okay with that.

I’m not going to be the writer who posts 3-5 times a day on social media—unless someone else does it for me. And I’m okay with that.

I’m not going to be the writer on a kajillion platforms—unless someone else manages them for me. And I’m okay with that.

I’m not going to be the writer going on a 10-city book tour. And I’m completely okay with that. Because honestly, that sounds exhausting.

One thing I know for sure… my limitations won’t change when I screw the cubicle.

Whether I find a new Corp Hell Job that let’s me WFH, or find a side hustle that replaces the Corp Hell Job, or get the opportunity to write full time… being a co-caregiver for elderly parents will still be a part of my life.

Until it’s not.

So, maybe this isn’t the season where I dramatically—it’ll be quietly dramatic—quit my job, hole up in my little studio (or a tiny house on a piece of land—that’s the other dream) and write uninterrupted for eight hours a day.

Yet.

But it’s how the work happens right now.

Romantic, this is not.

But it’s how I roll.

And for now, that has to be enough.

I’m not writing in spite of this life.

I’m writing inside it.

Learning how to keep choosing to write—even when the world keeps asking me to choose everything else first—is the part that matters most.

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Midlife badass incoming on 4/14/26. Available for pre-order and early reviews on NetGalley now.

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