If you’ve ever heard me talk about taking time out for myself, you might have heard me say I was “conserving energy.” It’s a phrase I created to reframe my feelings of guilt for being idle into something positive.
The calamity that surrounded my initiation into caregiving was brutal. During that time, there was no rest.
Once I got my grandma straightened out, though, for a while it was a pretty smooth ride.
Thanks to my grandma’s lingering independence and her creature of habit nature, there were many things she could still do for herself, and she could spend large chunks of time alone.
Much earlier in my caregiving experience, I would look at other caregivers and feel guilty for being so worn out with so many others out there also working full time that:
- Provide hours of intensive physical assistance
- Overhaul their living situation to keep a LO out of a nursing home or because it seems like their only option
- Manage caring for multiple humans, including children
I’m a single adult.
I don’t have any prospects or kids.
Even when I had a 9-5, I didn’t feel like I was “sacrificing my time” or “uprooting my life” when I was spending every evening and all weekend with her.
I thought had it easy. I didn’t deserve to take a break.
It took me a long time to embrace the fact is that everyone’s journeys are unique, with many factors impacting the direction of our paths at any given point.
Don’t get me wrong, even when things seem easy, caregiving is still hard. Even if you’re not providing a lot of hands-on help, the emotional and spiritual aspects of caring for a loved one on a downward descent can take a toll.
Last year around this time, I had no idea that I would be getting a crash course in the exact kind of caregiving that I was feeling guilty for not experiencing myself.
My dear friend, Calvin, for whom I was guardian and the only person in his life not paid to care about him, was discharged from the hospital on hospice. His support provider (and he needed 24 hour supports due to his disabilities) walked out on us when he got home. I became Calvin’s sole caregiver until the end of his time here on earth. I quit my job in a confused and uncertain panic, trying to clear my plate of everything that was stressing me out and tying me down at the time so I could be with him and manage Grandma too.
At the time, I was in denial about his condition and didn’t believe he was at the end of his path. When he came home, I spent days round the clock with him, only getting a break to come home and sleep or go take care of Grandma. Over the course of three weeks, he declined—all the while I did everything for him and spent every waking minute by his side, blind to the signals he was sending me that he was done, not believing he was really going to pass away.
It was grueling.
It took me a month and a half to recover from all of that. My first intimate encounter with death. A gaping hole in your heart that feels like you’re holding your breath but can’t let it out.
Everything happened so fast it was hard to make sense of it. I spent days reliving the final moments. Stuck in a loop, I’d move on and then moments later I’d be right back in Calvin’s house.
Into the second month of recovery, overwhelmed with guilt for not getting anything accomplished… still weary and overcome with grief, I had an epiphany. I wasn’t just in recovery from Calvin’s death, I was also having anticipatory grief for Grandma. I started having visions of going through the same thing with my grandma, realizing that our journey would have the same inevitable and imminent result.
I blamed the magnet in my bed for my lack of desire and motivation to do anything beyond basic.
I had to let go of those feelings of loss and focused on what I had right then and there: I still had Grandma. I have great memories of my friend and a wealth of wisdom from being part of his life. I had a new business – remember, I had just quit my job! I desperately needed to start bringing in money but also owed some work debt with some very strict deadlines…. Thanks to a few pep talks from people like my mom and my OG and the shrinking funds in my bank account, I woke up and got my proverbial shit together and started working on my projects again.
I even got my act together to get some other helpers in there besides myself, which means time off. More time for myself to focus on MY income, MY priorities, MY dreams.
Of course, I know I deserve to rest. But just like everyone else, I have moments when I feel like I should be doing more.
Certainly, things can be easier. (They can *always* be easier.) I still find myself slipping into guilt mode sometimes, because my grandma is still:
- Able to be alone for small chunks of time during the day and still mostly sleeping through the night
- Doing a lot of things for herself
- My only major caring commitment
But now, we’re in a new territory in our journey.
The organization strategies and tools I’ve relied on over the past three years are starting to fail. No matter how many different ways we give Grandma the information, it’s just not sticking. She is needing more and more help and is spending less and less time by herself.
The end is impending and inescapable..
Things are gonna get bumpy.
So when I hear that negative loop emerging in the back of my brain telling me I should be doing something rather than what gives me joy in that moment, I just remind myself that I’m “conserving energy,” and the grief and fear melt away.