**Please note that this essay was originally compiled as of several weeks ago before we became quarantined by the COVID-19 pandemic.**
It started with a disagreement with my dad. I was living with him at the time and he was being, in my opinion, unempathetic. Stressed out and feeling like I had limited options, I chose to move out. Even though the catalyst was born of defiance and pride, and was equally a financial necessity, my decision to move into my mom’s house ended up being the right choice. It was time for her to receive the next level of care. I couldn’t afford to hire a caregiver for her or even afford my own apartment for that matter, so it made sense. And with that commitment, internally I recoiled.
I like to believe that most adults prefer their own space to one degree or another. I am thirty-two now. I’ve always been independent and leaned toward the introverted-heavy side of my personality. Being in my thirties and living back at home with family wasn’t what I ever envisioned for myself, but yet, neither was Alzheimer’s.
Since I was moving from one parent’s house to another’s, I had the luxury of using a handful of weekends to complete the move. On the last weekend Dad helped me move furniture with his truck. As he was getting ready to leave he uncharacteristically asked, “Are you okay?”
“No. I’m not okay.”
The tears and hyperventilating came like a gust of wind, carrying me where I didn’t want to go and with a force that felt violating.
I didn’t want to be living with Mom. I wanted my life back. I wanted everything to be better and to have the ability to live each day as I wanted, not at the mercy of illness.
And I didn’t want to feel guilty for feeling this way, for feeling selfish and self-absorbed.
Ah, caregiving in a nutshell.
Dad and I talked for awhile in his car. He actively listened. He tried to offer advice, offer solutions. I could see that as a parent it pained him to see me broken. In these moments I knew him to exude the highest level of compassion, and it made me feel a little less invisible.
In the months following September, after I officially finished moving in, it’s been a rough ride. Anxiety manifested in ways I didn’t expect. I began experiencing my own health problems. Self-care was sabotaged by a natural disaster emergency. (More on these two topics later). And overall, being at home didn’t feel relaxing or fully “safe”, as it should. Home was synonymous with being on duty, persistently and randomly being interrupted by Mom needing help with something. New responsibility came with each quiet knock on my bedroom door and her asking me the umpteenth question. Other times I was urged out of my room by the sounds of something troublesome, a crash or her muttering angrily to herself. Sometimes I was beckoned by a bought of silence.
I was morphing more fully into a mother, always anticipating the next moment of need or concern or protection, never truly at ease.
Now, nearly six months deep into live-in caregiving, things have settled a bit. We finally have a basic routine that feels comfortable. We get on each others nerves less. I have accepted some of her dementia quirks, mostly given up on the unnecessary frustration of trying to control them.
This doesn’t mean everything is sunshine and rainbows. I still get annoyed or upset on occasion, and the same goes for Mom. But I have to remind myself of how far we’ve come from. Letting go of control, especially when it feels like the only thing I have going for me, is a hurdle as high as my own stubbornness and fear. Often that hurdle was towering. It’s waned now, but still there. Some days I can stand nothing but to bury myself beside it, waiting to feel brave enough again to stand up and take on the next day, the next moment even. To stand in stillness or to inch forward, just anything but backward.