Living with dementia or caring for someone with dementia always feels like you’re hanging out at Defcon 3 or at 5 minutes to 12 on the Doomsday Clock, depending on whether you like military or comic book metaphors. As a caregiver, I’ve spent an enormous amount of time creating spaces of competency for my mom, who has moderate dementia, to try to avoid compounding catastrophe on both small and large scales. I also spend an enormous amount of time preparing for all the wrong things to happen that are outside of my control. Is it a trauma response? Sure. It was something I learned to do as a kid, unlearned as an adult, and then reincorporated when I suddenly found myself eyeballs deep in caregiving for an ailing parent and a dying one. It’s my way, though, to try to turn negatives into something that works in my favor, and it’s probably my favorite method of living a caregiver’s life because it saves our collection bacon every single time.
2021 was basically a year in which anything that could go wrong did go wrong. My spouse’s job was dissolved at the end of 2020, and my work was at a standstill because no one wanted anyone working in their homes. A beloved family pet had to be put to sleep. I was hit in a head-on collision, totaling our car and sending me into months of recovery work. We were hit by Hurricane Ida and our home suffered damages. My spouse and I got Covid. And through all of this, we still had the responsibility of making sure my mother was okay and well cared for, even though we were absolutely not okay.
If you read that litany of awful and are exhausted just by thinking about it- spot on response. What kept us going was preparation and community. Now that the worst is past- and no, we’re still not completely recovered from all that- I can look back on it and say that it was an excellent test of all the preparation work that I had done.
Here’s what I learned: even though I had done a lot- probably more than most ever do- it still wasn’t enough to keep me from going completely off my game. I don’t feel bad about that at all, either. Did you see that list of nonsense we managed to make it through? I’m proud I have walking around sense. I did my best, it worked in that we made it, but it left absolutely zero time or space for me to recover myself. Hence, there was no writing. For about six week after my car accident, I couldn’t even stand long enough to make breakfast (here’s that community part- I asked for people to bring ready-made breakfast to the house for Mom, and in true Louisiana fashion they delivered above and beyond), much less sit down to write. Given that the hits kept coming for months… there was barely ever a moment to breathe.
Sometimes, life is like that, but when you’re caregiving, the stakes are so much higher. You have to consistently deliver the care that your LOWD needs, even if you’re falling to pieces. Letting an iPad or Encanto take the lead for a while isn’t necessarily an option like with children. You have to figure out where they are that day in their ability to see, to hear, to process, where they are in the space-time continuum, and then give them something to do and keep giving them something to occupy themselves because- like children- if you don’t, they’ll find their own fun, and that’s usually not fun for anyone else.The worst part is, you have to have yourself together- or some semblance of together- to deliver that care. Having one brain to serve two bodies requires much. It’s no wonder, really, that caregivers are always so tired- and why, even if I had somehow found the time, I couldn’t string coherent thoughts together.
I learned over the course of The Year of Hell that my preparations to stave off the worst things met the mark for keeping my family afloat and providing stability and care for my mom, but at the end of it, there wasn’t enough of any of those resources left to care for me in a way that could produce meaningful results in a time frame that got me back to where I personally needed to be even though I continuously had to give stability and support to my household and my mom.
This was a grave error on my part, and one that I’m going to work on rectifying. This kind of thinking is a major contributor to caregiver burnout and deep moral injury that just absolutely massacres our souls and ability to keep going. It also negatively affects our health so much that we die at alarmingly high rates and develop chronic illnesses. It looks like there’s no way out and no way up, but there has to be. In the coming year, I’m going to figure out what to do to save not just my family but me. Along the way, I’ll do my best to keep writing about it and bring y’all along too because my mission has been “It doesn’t have to be this hard” since I started down this road in 2015. The way that it doesn’t have to be so hard is to figure out how to hack caregiving and share it so that the knowledge isn’t so hard to find.
The Dementia Diva 