At PINKO, we’re conducting a series of interviews with essential workers during the COVID-19 pandemic titled Essential Workers' Inquiry.
Workers in the health care system are highly impacted by the coronavirus, but a significant amount of that labor happens far from the hospitals. The BLS counted more than 3 million people as “home health aides” in 2018, though some estimates put the numbers at 4.4 million and the sector was already projected to grow far more rapidly than the average — before the pandemic began. It’s a highly fragmented industry, with most carers working inconsistent hours with no benefits for low wages, directly responsible for the health of the people they care for. We spoke with Justin Hogg, who cares for his grandmother, about his experience with this crucial work.
Pinko: Tell us what a home care worker is. What does a home worker do? How is someone classified that way? Is it licensed or informal? Is there training for it? How do you get paid?
Justin: I’m not sure what a home care worker is. For my family, we’ve never identified as home care workers, and this is my first time hearing about the term, but I assume that it is people who take care of those who need taking care of in home. I’m sure there is formal training for home care workers, I’ve never been exposed to that though. When our grandma had a massive stroke in 2004, my mom and family just jumped into the fire. We looked into getting paid for the work we do some years later, but it was a bullshit amount and not worth negotiating the bureaucracy of those sorts of things where they are constantly on your ass for your sources of income, what you’re spending the money on etc. Already having to wade through the soup of bureaucracy in regards to home health care, medication, supplies, and insurance takes its toll, so to make a couple of bucks while constantly being hounded? No thanks. And I recently learned that you can actually exhaust the funding for being a home care worker.
With that being said, I guess we would be classified as “Informal workers” except that the work we do never gets registered or validated in the system of work because it’s not waged (not that I care) by the government or in analyses of the working class because it falls outside the purview of say reproduction. I used to identify with saying the care work we do is “invisible” but I’m more and more disillusioned by that as well, because the work we do is not invisible, it is obscured by systems of power (including leftist working class analyses).
Who do you care for? How did you start this work? How long have you done it? What was your relationship to the person you’re caring for before this job? How has the relationship changed? What is challenging about it? What do you find rewarding?
My family, but primarily my mother and I, have cared for my grandmother since 2004 when she suffered a major stroke affecting the left side of her brain and completely disabling her and bounding her to a bed, where she requires 24 hour care to be fed, washed, cleaned etc. My grandmother has always been a mother for me and so I would say that the relationship changed in that I and my mother became mothers for her. When I was younger I used to think that the roles had reversed in the manner of I was once a child and she cared for me, and now she was like the child. I realized that thinking about things like that was a useless and lazy way of imagining childhood and the elderly. She is my elder and we have both mothered for the other.
Obviously, everything is challenging about taking care of an elderly person. Realizing that my grandmother is in cognitive decline, seeing the inevitable loss of her physical strength, realizing that if we had the funds early on and the world was different that she could have walked again, seeing the traces of movement in her left side (she can still move her flaccid left arm up and down, open her hand for a moment before it tightens up again, but the connection is weak), navigating the violent bureaucracy of home health care systems and hospitals, which treat my grandmother as a number and have no concept (by design) of what care means, the foley catheter which is a literal hotbed for urinary tract infections (UTIs) and land us in the hospital at least 3 times a year (my gripe is with the fact that this is the only technology available and does not account for long term use, infection risk, antibiotic resistance over time), the frustrations of eldercare not being a focus of communization, of Marxist thought, of other radical theories which analyze that which “must be done,” having no community which helps in the tasks of care. I have many more frustrations, but these are the pressing ones. As far as a reward, the only reward I could possibly imagine is knowing that each day we spend with my grandmother is a gift, that we learn from her and her from us.
Are you able to control how your work goes? When do you start and stop your day? Who provides supplies? Do you work alone or with other carers? Do you talk with other carers? Do other family members work with you to care for this person? Are they paid?
The work is uncontrollable and it is primarily my mother who has to deal with the ramifications of this as she is the one who sleeps by her mother’s side. My grandmother does not have regular sleep patterns. She gets agitated in the night, wakes up at 3 A.M. in mental confusion or physical pain, and it is my mother who has to navigate these flare ups. It is not at all like being woken up to a crying child in the middle of the night. They usually have a straightforward need that requires care. As I stated, sometimes my grandmother wakes up in mental confusion, where she is saying things that make no sense such as “move me over” where there exists no place she can moved. My mother performs the task, but 5 minutes later my grandmother is asking again, and again, until the only thing that quells her confusion is her falling back into sleep. The traumas of her initial trauma (when she had a stroke, she fell to the ground) bubble up to the surface often in this mental confusion, and she yells at hours of the night exclaiming (I’m falling).
What is a caretaker supposed to do in these situations? Words do not work, burnout sets in. We try but we lose it sometimes, frustrated with the all consuming and repetitive flare ups. There is no start, there is no stop. My grandmother in her fits of sleep are the moments of peace, because as soon as she wakes up she is asking again, “Where’s my food?” even though she just ate 30 minutes ago. Caring for my grandmother is all consuming and there is little rest. As far as supplies go, we order her supplies, some out of pocket, and some the insurance covers. Pads, sprays, catheters. We have been stockpiling supplies, because with the pandemic we know there may come a time where the supplies are not as easily available. We have never met anyone who takes care of another person the way we have for the last 16–17 years.
What has the coronavirus changed about your ability to do this work? Have you been able to keep your regular standards of care/safety? What supplies or support do you need now that you don’t have? Do you need to take on more work to keep this person safe? Have they had any complications due to the virus? Have you?
Have you been able to plan for what to do if you get exposed to the virus? Is there support in place? Do you feel like you understand what the risks to you and the person you care for are? Do you see a way to manage these risks? Does the person you care for feel this way?
Do you think once the “infectious peak” has passed your work will go back to the way it was before? Are there ways you can see this work changing, for better or worse, in the near future? Are there changes you would like to make but feel you can’t? After the rev, would providing care for people who need it look like the way your job works now?
What else would you like to say about the work that you do? What do you think people should know about how it operates? What does it mean for other workers?
The coronavirus feels like an ongoing catastrophe that is moving closer into focus. It was always there, blurry, and now it is focused and its intensity more heavily felt. There’s a heaviness hanging over my house. As I write this, my grandmother just returned home from the hospital. We had to go in for a possible UTI which turned out to be dangerously low sodium levels in her body from a result of chronic under-prescribing of Lasix water pills. This connects back to the violent bureaucracy of the home health care industry. If they knew what the hell they were doing she would have never ended up there, but they have zero idea what they are doing, what medications she really needs, and because of this she suffers. We’ve had to teach ourselves and learn from experience which medication to use and how she responds to it, because the so-called doctors do not know. We had to bypass our usual hospital which is just across the street and go to a hospital a few miles away because they were the only ones who let a patient have a support person present. We never leave our grandmother alone in the hospital, because they know nothing about her history, nothing about her needs. There was no way in the world we were going to let her be in a hospital alone, where she would have come out worse than when she went in. So, luckily for us, my mother and her were by her side every step of the way. This is why hospitals are not places of care but only means of keeping a person alive. It’s always been the case, but the coronavirus is now really hammering that point home in the way most hospitals are not allowing people who cannot even advocate for themselves to have a support person who knows more than any doctor could know.
Things at home with the coronavirus have been fine, but I definitely fear her going into the hospital this most recent time and being exposed while she was in there. As I said, a heaviness hangs close. Everyone in my household is good at the moment, but what were to happen if I, my grandmother or my mother got sick with it? We only have ourselves to depend on and at that point the system we have would fall apart. In the case of my grandmother we would have to make the decision to either send her into the hospital alone with the virus where she would probably die, or have her die at home. An impossible decision to plan for. Every action we take from this point forward, every time we leave the house, every supply that comes in from who knows where, it is all a threat, it is all a catastrophe looming in the distance. There is no way to manage the risks because there is no infrastructure within the system itself or anything outside of it for us that divides the care in any kind of dependable way amongst any other dependable people outside of ourselves. We have other family members who have been there for us, but they would not be ready. They have other jobs and it would be impossible for them to care for her.
This language of a prospective “infectious peak” is extremely dangerous in my view. The virus is not going anywhere. When stay-at-home orders and lockdowns and the rest are relaxed, the world will relax and we will relax and the virus will still be there. Realistically we cannot continue to be extremely cautious either. Human error occurs, you wash your hands but not a part of your arm, your arm touches something, you touch that something later, are infected, spread the infection. That is the reality for the foreseeable future. At some point I am sure one of us three are going to get it, I’m pretty sure most people in the USA are going to get it. But this is what happens when there are no actual systems of care, just systems of management and systems whose goal is to keep people alive and extract data and money from their bodies. We have done a hell of a job at caring for my grandmother but we live in this (as the great Peter Tosh would say) shitstem, and we cannot escape from its many webs unless it is destroyed. But how do you destroy a violent system of care when it’s all you’ve got? It feels like being in the middle of the ocean, and you look in all directions and there is just nothing. All you have is the boat, and it’s drifting despite your fighting, and who knows where you’ll end up.
I’m not sure that “after the rev” people are going to wake up to what it means to care. The majority of people aren’t focusing on aspects of care, especially eldercare because it doesn’t directly affect them. Who is out there right now demanding that people with revolutionary desires consider seriously the necessity of eldercare? When people talk about the contradictions we will have to tackle when the revolution takes place, who is seriously thinking through aspects of eldercare? Would I be demanding we work out those contradictions if my grandmother hadn’t gone down in 2004? It’s a difficult question for me to face. For people “after the rev” to give a shit about eldercare, it would mean that people would have to give a shit about elders. And not just about the reproduction of the violent bureaucratic system of keeping them alive but about learning from them, sharing and receiving the other’s wisdom, filling their cups with water from the river without hoping to receive anything back. I don’t have answers, but I think it goes back to what I mentioned earlier about how our relationship changed when she suffered a stroke. She was a mother for me, and I became a mother for her. That was the necessity, that was what was needed. It was and is a shared relationship of care dedicated to the promise that I and my grandmother could live our lives to the fullest given our circumstances. A relationship with echoes of the way that my grandmother became a mother for her Big Mama when she was at the end of her life. These aren’t relationships that are just about two people, they have the reverberations of a care not concerned with “quality of life” but rather, with something beyond the singular life which we have been told is ours and ours alone.
The coronavirus has heightened the fact that I just don’t think people have any desire to pursue those relationships with elders. They have desires to kill the colonizers, abolish the prison industrial complex, expropriate the means of production, and all of that is obviously necessary, but as it concerns specifically aspects of care, it would seem as though the burden would still fall on families of elders who need that care. It would take an entirely new relation to family, and community that no one has theorized or practiced, but I feel as though I have lived in brief moments with my grandmother and my mother. These sorts of things escape words for the time being. I’m still too close to the situation. I don’t have much faith in the human or the revolution for being able to give life to those words at this point in my life.