A friend of mine whom I provided direct care to for 8 years just died: Care work in a society of organized care-lessness

By care, however, we not only mean hands-on care, or the work people do when directly looking after the physical and emotional needs of others – critical and urgent as this dimension of caring remains. Care is also a social capacity and activity involving the nurturing of all that is necessary for the welfare and flourishing of life. Above all, to put care centre stage means recognizing and embracing our interdependencies. 

– from The Care Manifesto: The Politics of Interdependence, by the Care Collective

For the past 8 years the paid work that I do is in the capacity as a direct care worker in an adult foster care facility. I have done care work in a paid capacity in previous years as well, but this is the longest stint I have done care work for pay during my adult life.

I love the work that I do, which requires providing care to adults who cannot care for themselves. The work involves bathing people, assisting with dressing, mobility, and other daily aspects like feeding and going to the bathroom. 

However, care work is more than just the physical care aspects that I just mentioned, it means being present for people, showing empathy, being a good listener, creatively engaging people in conversation, and making connections with people. 

Recently, one of the residents where I work passed away. His passing has had a deep impact on me. I provided care for this person for the past 8 years. When he was in high school, he was in a bad car accident and has been unable to care for himself ever since.

For the past 8 years I have bathed this sweet person, shaved them, brushed their teeth, assisted them with getting dressed. I have also spent countless hours in conversation with this person, making jokes, laughing, listening to music, going for rides, sitting in the park, playing cards, putting puzzles together and watching horror movies. I learned early on in our relationship that this sweet person also had an affinity for horror movies, so I knew that we would be close. 

We were close in age, so we grew up listening to and likely much of the same music. We would regularly watch music videos on YouTube and rock out to 70s music.

In 2017, I had to have emergency surgery for blood clots in my legs. While I was in the hospital, this sweet person came to see me. I was still pretty drugged up, but the day after surgery I remember this person sitting in their wheelchair next to my bed, holding my hand. 

The adult foster care facility I worked in with this person was closing in 2022, so they were being assigned to a different facility. I requested to be transferred to that facility, specifically because I wanted to continue to provide care for this person and several other people whom I had come to know and have a deep relationship with over the years.

I was sick a few weeks back and the last time I had seen the resident I had been doing care work for eight years ended up in the hospital. Going to the hospital was pretty normal for this person, as they were tube fed and regularly needed adjustments with the tube, along with struggling with respiratory issues for most of their adult life. 

When I returned to work, I found out from a co-worker that this friend of mine had passed away. I was devastated to the point where I had to sit down after hearing this heart wrenching news. After several minutes I was able to collective myself and then inquired as to the reason for this person’s passing. No details were available. My co-worker then said, “didn’t anyone call you to let you know that this person had died?” I said that no one had reached out.

My sadness had quickly turned to anger. How could someone that I had cared for for so many years, a person that everyone who worked with me knew that I had a special relationship with, not result in someone attempting to contact me? I was dumbfounded and pissed. 

I then checked my work e-mail and the only information that was shared, was an obituary that this person’s family had sent out. I decided to send a message to those who work in an administrative capacity for the organization I work for. Here is what I wrote – which has blanks where this person’s name was.

I was not aware of ____ passing until 2 days ago, when I came back to work. I was shocked to find out that _____ had died and am deeply sadden by this news. I was also saddened by the fact that no one from this organization said anything about _____ death, apart from one co-worker. I never received a call or notification that ____ had died and that bothers me tremendously. Yes, I was just a care giver for _____, but their death is not just a part of the job, it deeply impacts me precisely because of the deep relationship I had with them for 8 years. I know I am not family, but their passing hurts no less for me than if a family member had passed. I find it somewhat incomprehensible that beyond the sharing of this obituary, that there has been no outreach and no effort put forth to provide some sort of comfort and closure for those of us who had a deep connection to _____. _____ was not just a person in our care, they were someone I cared about deeply. Please help me understand how _____ passing merits only a digital sharing of his obituary?

A society of organized care-lessness

I only had one person from where I work respond to my e-mail, along with the fact that most of my co-workers said nothing about the passing of friend, nor did they inquire has to how I was feeling or how their death was impacting me.

I have been thinking about this for the past several days, trying to make sense of why there seemed to be so little acknowledgement of the loss of my friend. As I reflected on this dynamic, it began to make sense to me why there was virtually no empathy being demonstrated towards me, nor any evidence of mourning from the organization. In order to do care work for the organization that I work for, you have to be trained in a number of health care aspects, all of which are necessary and important. Whether it is CPR training, administering medication, recipient rights or confidentiality issues, the organization I work for does a good job of covering these health care related matters. However, there is one area that trainings are not offered. We are not taught, nor trained in how to demonstrate empathy, which for me is as important as the health related, quality of life areas of direct care, if not more important.

The population I work with are people who have had closed head injuries, which almost exclusively means they have limited or no mobility. The level of care varies, but most of the people I have worked with will never be able to live on their own nor outside of a care facility. Many of them struggle with the trauma they have experienced, with the depression they fight against and the overall feeling of being discarded in this society. Even worse, they have to deal with the fact that for many people, their response to the condition of those I work with is pity. Pity is an awful sentiment. In fact, the demonstration of pity is an indictment of how fucked up our culture is.

We all need to learn and develop our capacity to care for each other, to be empathetic and to be in deep relationship with each other. At the beginning of the pandemic in March of 2020, we began to see how the lack of empathy and care were exposed on a national scale. Some people were in denial about what was happening, while others chose to focus exclusively on their own well being and damn the rest of society. 

We saw how in a capitalist culture, that people prioritized productivity and consumption over the care and general well being of families and communities. This dynamic was not new, it was merely exposed, and had the curtain pulled back for everyone to see.

Of course, not everyone was so calloused in their response to the pandemic. In Grand Rapids, the Grand Rapids Area Mutual Aid Network (GRAMAN) was born. People rallied around and gravitated to the idea that everything we need is right here in our community. The level of collective care has been inspiring in so many ways, and I have been grateful to be part of that work. 

Moving forward we need to weave direct care into every aspect of society and make care work central to how we function, thus displacing the Neoliberal economic system that prioritizes profit over people. A great resource that can assist us in this process is the book, The Care Manifesto: The Politics of Interdependence, by The Care Collective. 

This post is dedicated to the memory of my dear friend who died two weeks ago. I will miss them, but I will never forgot our friendship and how much we meant to each other. Rest well dear friend.