Any caregiver can tell you that many days are spent just trying to survive, and that the smallest things can create miniature disasters that totally wreck the day on a multitude of levels. Caregivers- or care partners, whichever term you prefer for yourself or a person who is providing care and support to a person unable to provide for themselves- often struggle to get in front of this because our initiation into caregiving is often because of an acute situation- possibly disastrous- and because the learning curve on dementia and caregiving is so steep, we often never get the opportunity to become proactive instead of reactive.
We stay in a state of chronic distress, stress, and often also in a state of recurring trauma and moral injury. Moral injury is something that has been talked about in philosophical circles for generations, but has finally starting emerging into common public and health discourse and under the parameters of those who have been in the military. The pandemic has also opened up the conversation of moral injury in healthcare workers who have been working extraordinarily long shifts with little to no support, pay that doesn’t reflect the amount of labor required, increasing probabilities of danger to themselves, having to work under ever-changing parameters of care and compliance, the enormity of their duty of care with increasing uncertainty, unqualified people trying to force them to provide unproven and harmful methods and medications… the list goes on and on.
The story of healthcare workers during these last years is all too familiar to informal caregivers, and the course of the pandemic (so far) parallels our inner experiences in eerily similar ways. The following is the cycle that most caregivers have been living for generations due to a lack of infrastructure, marginalization and misinformation within our communities, being chronically undervalued and overextended, and the experience of compounding catastrophes and traumas that are rarely recognized.
First, there is The Rally. It’s a herculean effort mounted in the face of a disaster. You suit up, gird your loins, accept that you don’t really know what you’re working with, but you’re also unwilling to accept defeat. In short, you respond to a likely chronic situation as if it is an acute one. You are called a hero, people show up for you for a few months in different ways, but most often by bringing endless amounts of food and saying “if you need anything, let me know! I’m here for you.” People inform you that they’re praying for you. You work endless hours trying to shore up the splintering of systems and lives, try to protect your own family while also spending time with them, try to be normal in the very precious hours that you have. Ignore the fact that you’re struggling yourself because you think “this can’t last forever”. Hours upon hours are spent trying to figure out how to help these people live.
Second is the Realization. Resources were never allocated for this, or if they once were, those resources are long gone. No one knows what they’re doing, and this is a much, much larger mess than you originally anticipated. There is a gnawing feeling in your soul that you’re not going to get out of this the way you thought you would. This is often coupled with the fact that all that support you were shown and promised has petered out considerably, maybe even stopped totally right as everything is heading in the absolutely wrong direction. That Hercules High you were on is leaving you, but you keep trying to rally until you fall over with exhaustion and possibly also sickness. This is often a time when ambiguous loss and grief starts, and it remains an undercurrent for a long time.
Third is the Recalibration. This usually comes after bottoming out. You take the time to catch your breath and start looking at how much are you actually capable of doing, not just in the hours of the day but also financially, mentally, emotionally, and spiritually. You start thinking about how you need to be paid more as a healthcare worker for the services you’re providing, and you’re absolutely right. A key divergence here is that healthcare workers do have options for being paid, and they are valued in a labor market at the outside. “Informal” caregivers- who are really just healthcare workers without the benefit of having a foundation in an academic education or mentorship- are usually never paid. In a 2019 study done by AARP, they “found that in 2017, about 41 million family caregivers in the U.S. provided an estimated 34 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion.” It’s estimated because we don’t get paid because the labor markets in dementia caregiving are either nonexistent or totally splintered. Between not recognizing it as real labor and having an insidious cultural tenet that somehow children owe a debt for existing that they must pay when the parents become old and infirm, we rarely have options for remuneration for our work. You figure out who is really in your corner, and you that support is often slim, perhaps nonexistent. This is about the time that people either exit the picture or resign themselves to the fact that they’re in for a long haul of unknowns, but they’re committed to seeing it through until they literally cannot anymore.
Fourth is Retaliation and Resentment. This is about the time that family members start trying to tell you what you’re doing wrong and what you should be doing instead- usually from reading Facebook posts and watching Youtube videos and not from reading actual peer-reviewed research or experience. This is also about the time that the person or people that you’re caring for are just totally out-of-hand and retaliating against care and good sense for the sake of feeling like they have freedom and control. It is on par with simultaneously trying to wrestle a cheetah and reason with a two year old who is convinced they know more than you do while they wear a pull-up on the outside of their shorts and try to put their hand on a stove eye. You are worn out, you are tired of this shit, you are doing the best you can to meet the standards of care that are necessary, and you’re doing it with nearly no support, but everyone wants to tell you how you’re failing. You resent all of them. Your soul, brain, and body feel crushed a lot. There is no amount of 10-minute self care routines that will rejuvenate you, and you are not afforded enough vacation to pull yourself totally back together. You realize you’re changing. You are a kind of exhausted you didn’t know you existed. Dissociation, grief, complex anger, and breakdowns happen a lot, and for reasons that, in the Before Times, would’ve never have even registered. A lot of people at this stage are so burned out they can’t go on and exit. Oftentimes, they find that they’re in the early stages of chronic illness themselves. At this point, though, you’ve figured out that this is cyclical, and while you don’t know exactly what and when it’s going to get set off again, you start being able to anticipate it better. You have more information, but not necessarily resources available to get ahead of anything. You resent the people and the things that derail you getting on with your own life and the progress you were hoping beyond hope that you were making. It doesn’t have to be this hard, but too many things work against you, work against the people that you’re caring for. The goalposts move like you’re watching an endless loop of a wildebeest trying to evade a big cat- the zigzagging, the doubling back, the falling, the recovery, the fakes, sudden stops.
Fifth is Resignation and Rebellion. “This is where we are, this is what’s going to happen, and we’re just going to have to ride it out and find a way to meet each new challenge” is the MO. You’re too tired to do anything else anyway. In this part of things, you’re attitude (which is a reflection of the state you’re currently in) is often “let it all burn down. just so long as I can sleep and recover.” You do the bare minimums, things fall away that you never thought you’d let go of, your worldview is not the same, you are not the same, and you secretly oscillate between grief and anxiety that you’ll never get back to who you were or the level of muchness that you once had. It’s not that you don’t care- you’ve cared more than most- but no one has cared for you, not even yourself. Your body stands in requiem of your inner being. You are poorer in so many ways than when it started. It is what it is, and you’re just trying to make it. This is about the time also that people get really bold in showing you that you don’t matter, and they do things like explicitly telling you that your health and wellness are sacrificial instead of just hinting at it, and they don’t mind saying you must absolutely give care instead of protecting yourself first. You’ve been trying to find some peace in your plastic suits and meaning in your permanently lined face from the respirators- but to tell you that you can’t even have those things, literally or proverbially is just the bridge too far. The rebellion is swift, angry, and righteous- but it’s not actually a rebellion. It’s just boundary setting in a situation where there hasn’t been any for a long time. People who have no idea what you’ve gone through, though, see it that way because they checked out a long time ago and have no idea what has been happening for a long time.
And then, you start all over again with another rally, but it’s much smaller.
To my healthcare workers reading this- as a caregiver who has been doing this work for my own family and community, I empathize deeply and I am so incredibly sorry for the way you have been frankly mistreated. Informal caregivers have been living in a pandemic state for generations now, and no one has come to rescue us either. We also are met with useless prayers and platitudes and then left holding the bag for the choices others have made. We also get told that we need to buck up, figure it out, be flexible, rise to the occasion, shut up, sit down, save lives, save money, meet impossible standards. We see you.
For everyone who has never thought about what caregiving or healthcare means or what it costs- the cost goes far beyond a dollar amount because no one is preparing for these things, interventions from different entities bottleneck the possibilities for infrastructure that could create better capacity for dealing with the situation, and misinformation and marginalization act in similar ways to create toxicity in already fractured communities that act as a crushing wheel to just finish them off. It looks different on the outside at first blush, but they’re really just the same failures of markets, governments, and community manifesting in the fullness that they can depending on the amount of area the can cover. The the seeds were sown long ago for the garden of disaster that the pandemic has been in healthcare through the isolation, abuse, and exploitation of caregivers by society and the state. I propose that we work together to fix it, and that’s a lot of conversations.
You know, once we all finally can have a decent night’s sleep.
The Dementia Diva 