Caretaking

Caretaking is something I've been thinking about more and more these days, but have been reticent to write about. I have some hangups with imposter syndrome; I feel like I shouldn't write about something if I don't have much experience with it. Something writing has done for me is it's forced me to seek honesty with myself and will often help me arrive at insights I feel are worth sharing with people because I realize I do have something to say.

Since my mom got Alzheimer's, I've done two significant caretaking stints with her to give my dad a break. A friend of mine, who incidentally does some caretaking for her partner, recently said that if a topic feels hard to write about then that means it probably needs to be written about. I want to spend time engaging with this topic more so that I can connect with my dad on some level in his mostly lonely and isolating journey as a full-time caretaker. 

It's been deeply unsettling watching two different people's caretaking journeys in my life right now - unsettling in the disturbing realization of just how negligent policymakers are of people's basic and quite predictable needs.  If the healthcare system is not that great for people who just need something taken care of with a quick doctor's visit, then it is exponentially worse the more frequent care someone needs. It's an indictment on our healthcare system that the administrative part of being sick seems to be the biggest headache for both of the caretakers I know; the point at which both have broken down and sought paid help despite the accompanying stress with such an expense. And if the actual day-to-day care of someone with ME/CFS and Alzheimer's aren't the most daunting parts of those experiences then that's saying something real loud about our society. 

I wrote the following during my first caretaking visit with my mom a year ago: caretaking requires a ruthlessly scientific observation of the body. Of physical and behavioral changes and how intake affects output. My dad's preoccupation has become watching for minute or sometimes drastic changes that signal a shift to some new stage of the illness and the accompanying dread for how that will change their lives. For the patient, there’s a depressing surrender of autonomy, watching your ability to pursue your individual talents diminish until, one day, you physically can’t show up to those spaces you once occupied so confidently. It's a total surrender to routine. Life for the terminally sick becomes a sissyphian labor of trying to maintain a status quo for as long as you can. 

I love my mom and continue to be horrified by the ways a human body can and will inevitably break down but, on my last visit with her, I found myself laughing (Often with her) at some of the situations her poor memory got her into. For instance, making the strongest cup of coffee I've ever seen because she forgot how many coffee grounds she usually uses, "hiding" my slippers in unexpected places or thinking I was still an undergrad in college the whole time I was there. I'm sure it's a lot harder if you live with these little mishaps every day, and I certainly found my patience wear thin when I had other stressful things going on, but, overall, I found the whole situation laughable most of the time. Laughter can come from an awkward place or a place of needing relief. It can also be a way of respecting someone's humanity and not pitying or patronizing them. My younger friend who is helping care for her partner says people don't take comedy seriously enough. I agree. These are all objectively absurd situations that none of us desire to be in or are in control of. You can let the stress eat you or you can engage with the absurdity of their reality and have a good laugh about it. There's a sort of magical thinking it takes to visit that world - something to write about in a future post.

I dabble with tarot and pulled the Empress card today. It reminded me of the delicate balance of caregiving: giving to others and giving to yourself. Those who are familiar with tarot know that this card symbolizes generosity and abundance. The Empress is able to give generously to all the people in their life because they have a robust support system and are themselves amply given to. Each tarot card usually holds two opposing meanings that may apply: looked at one way, you are giving easily from spaciousness and abundance. Looked at the other way, you need to prioritize self-care more because you have given too much. I think taking care of other members of our tribe is one of the most basic instincts that humans possess. I am continually impressed by my dad's empathy for my mom despite the considerable pain and loss he has felt over gradually losing his companion and freedom in his later years. 

In a system that forces us to take on more strain than is safe for our bodies and minds, we are forced to be extra resourceful in getting our own needs met. Finding replenishment and joy is essential for continuing the caretaking journey. The Empress reminds us to look towards sustaining our energies and that we do have some control over the journey.