About work

Tell me again how being a stay-at-home caregiver and trying to build a business of my own isn’t work. (I’ve actually had people tell me I am “lucky” I don’t do “real” work.)

I could stay busy all day just on her, but that’s not really an option. I am fortunate that my mom is still well enough that I *can* work, even if it’s just when she’s asleep, but anyone who thinks adding building a business or even working for someone else onto the demands of caregiving is out of their tree. The reality is that caregiving alone is a full-time job, if your charge needs 24/7 supervision or care.

The truth is that, when I can create space for it, I LOVE the work I do and I love the people I do it with. It gives me a creative outlet that allows me to hold onto myself, the real Martina from before FTD took over her life, at a time when I see many caregivers losing their sense of identity. I am grateful that I have so far been able to retain my own. Maybe I’m just stubborn or maybe I’m adaptable, but I refuse to lose mine, even if it means working at weird hours.

That said, all of it together is a lot, especially on the bad days.

It is also true that I’ve spent my whole retirement on care for my mom and that if I didn’t work, big parts of her care (you know, little luxuries like food, shelter, and electricity) wouldn’t be covered. If I worked a traditional job, I’d be spending at least half my pay on caregiving (and that’s only if I scrimped and underpaid some desperate, cheap caregiver, who would even accept those rates).

This country is simply not equipped for the reality that faces families with a loved one, who requires 24/7 care. And I’m not just talking about families living with dementia either, but any of the many conditions that require a dedicated caregiver. I cannot tell you how many people I’ve met on this journey who, like me, are doing this alone. And, believe me, it is tiring.

After a long day that included working with clients, writing copy, attending an online training (that was fun…I should call the Guinness world record people. I don’t think the words “Not now. I will do it for you when this is over” have been repeated that many times in 90 minutes EVER), figuring out how to unlock the bathroom door after my mom locked us out and undid the precaution I’d MacGyvered to keep her from doing it in the first place, and starting work on an editing project for another client. In between all that, I did laundry, cleaned up, took care of my mom’s needs as they came up, and made soup.

So, yes, tell me again, how I don’t have a “real job”…


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