Writing My Heart: Eldercare, Trash Doctors, and Marxism-Eldercare and Capitalism Series

This is Part One in the Eldercare and Capitalism Series

When the sun is going down
When the dark is out to stay
I picture your smile, like it was yesterday
When the sun is going down
When the dark is out to stay
I picture your smile, like it was yesterday ❤

First things first. Massive, huge trigger warning: death, illness, trauma and in-depth descriptions and discussion of all three. Additionally, I think my level of honesty is not palatable to some people and that’s fine, I invite you to stop reading here.

I don’t write my heart because I want to construct a victim narrative or inspire lastima. In fact, despite everything, I am doing well. I am paying a long overdue debt to myself to be selfish and do whatever the fuck I want. I am focusing on my innate power and wisdom — living the lessons and fierce hope that my Dad left me with. What I mean by writing my heart is to express through writing in a raw way my pain, sadness, anger, and hope. I write my heart because what my Dad experienced as a disabled elderly person is fundamentally political and the pandemic has exposed this even more.

I’ve been staying inside since Covid began. My Dad died before the pandemic started but witnessing your parent pass away in the ICU makes you not want to play any role in that happening to another person. I’m not tryin’ to indirectly kill someone because I insisted on going to brunch. However, I do realize how stopping the spread is deeper than individual choice and I am definitely guilty of overusing the phrase “capitalism is the real virus.” But the pandemic has also reassured me of something I have always known: as a society we don’t give a shit about our elders. Even the Left. Even the Left, despite abstract statements about a commitment to community, doesn’t care enough about the disabled and the elderly.

The pandemic has shown me that it’s not a lack of knowledge about what our elders face because it’s common knowledge at this point that nursing homes have been disproportionately affected. Politicians have blatantly said that our elders are worth sacrificing for the “economy” and we have done nothing. I am glad that the Left is arguing that incarcerated people and migrants should be released from prisons and detention centers in the face of Covid— we should similarly be thinking about how to protect our elders because nursing homes, likes prisons, are breeding grounds for the spread of the virus. And elders are the first to be denied care when resources are scarce, especially working-class and elders of color.

I saw first-hand how elders are not valued in society over the course of my ten years as a caretaker for my Dad. My Dad suffered unnecessarily at the hands of trash doctors and nurses because of the violent capitalist logic that is embedded in medical institutions. I will not move on from this because he died. Fuck that. I will never get over his death or what happened to him. To forget is to forgive and I do not forgive. In fact, when he died, even in death the doctors couldn’t respect his body. The trash doctor in charge kept lifting his lifeless arm and dropping it to “confirm” that he was dead even though he wasn’t breathing, and his heart wasn’t beating. That image and his nonchalant arrogant attitude haunt me. In a desperate attempt to liberate my Dad in death from the ways that medical institutions have dehumanized him over the years, I removed his heart monitor and every other easily removable medical device. I told him he was free.

The last year of his life was the hardest and I don’t know how he — or I — survived it. He lost his ability to swallow and doctors refused to place a feeding tube, saying it went “against protocol” because the research doesn’t support the use of feeding tubes in people like my Dad, in elderly people with dementia. So I went and read the shitty research they cited, over 30 articles, and composed a literature review — much like I did for my PhD qualifying exam, except this time I did it in two days, not two years. What I discovered is that these doctor researchers use research to support their pre-established conclusions that justify ableism and ageism, and in other cases racism and sexism.

FOR EXAMPLE…practically all of the research on people with feeding tubes is done on people in nursing homes. One of the main arguments is that nursing home staff hand-feeding elders is one of the few times that elders have nurturing contact with another person. Another main argument is that if elders are getting nutrition orally, their more balanced diet makes bedsores heal faster. Another reason was that, on average, people without feeding tubes live longer. Another main argument is that people with feeding tubes still get aspiration pneumonia from their saliva (pneumonia from choking).

(Yes, you asshole doctors, I know you didn’t think a chubby little Latina could stand up to your bullshit but I can cite your trash articles better than you.)

Okay, so let’s back the fuck up and break this bullshit down. FIRST of ALL, this is assuming the person has the fucking ability to eat, which my Dad did not. They insisted on trying to feed him over and over again, which resulted in him choking over and over again and going back to the ICU over and over again until they just decided to let him starve to death. Literally, that was their plan. Let him starve to death rather than insert a feeding tube in a very minor procedure that doesn’t even require anesthesia, just sedation. They said that the procedure was “too risky,” more risky than letting him starve to death. Do you follow the logic? Of course not because there is no logic here, just bigotry and cruelty.

I complained to everyone, pleading, begging that they insert the feeding tube. I couldn’t bare to watch my Dad wither away. I had to save him. He was suffering. Additionally, my Dad’s wishes have always been clear: he wanted us to fight for his life. I was insulted repeatedly as I tried to advocate for my Dad by all kinds of trash doctors, and even those that seemed empathetic were still paternalistic. I consulted with the so-called “Ethics Committee” comprised of — dun dun dun — more doctors and nurses. They all had the same answer: no feeding tube because of the research. Okay so let’s go back to breaking down their precious “research.”

In essence, the research speaks to the inhumane conditions in nursing homes — not to the efficiency of the feeding tubes. Why are people in nursing homes only having human contact at mealtime? Why are elders in nursing homes getting bed sores? Are they not being turned, cleaned, getting out of bed? Additionally, OF COURSE people without feeding tubes live longer — they have the ability to eat and as such, tend to be less sick. It’s not the feeding tubes that are killing people. And yes, true, people with feeding tubes can still get aspiration pneumonia from getting bacteria-ridden salvia in their lungs. HOWEVER, if their teeth are brushed regularly that is less likely to happen. Guess where they stop getting their teeth brushed once they are no longer taking food orally? YUP, nursing homes!

Research 101 is knowing that correlation is NOT causation. But these doctors apparently don’t care. Medical institutions don’t care. What oversight do doctors have? Who approves this research? Just other ableist and ageist doctors. And when you raise a concern they often use medical jargon and depend on people’s lack of medical training and flat out intimidation to silence patients and their families. This is an injustice. This is not just my experience. Ask any disabled person who regularly interacts with medical institutions. This is everyone’s issue. We will all need medical care some day and we deserve to be treated with respect and have an honest chance at survival. Our elders deserve better. We deserve better.

My Dad went over an entire month with NO FOOD. He was severely DEHYDRATED during this time. He only survived from the occasional IV fluid he was given that balanced his electrolytes. I am so traumatized by this that I can’t tolerate being even a little bit thirsty because I can’t bear thinking about how dehydrated my Dad was. His saliva became so thick from dehydration that I had to suck it out of the back of his throat with a suction. Luckily, he finally got a feeding tube at another hospital after he was discharged from the first one that sent him home to die of starvation. The procedure lasted literally twenty minutes and he got his first tube-fed meal that same evening.

There are some good doctors out there. That some doctors can be more humane shows that another form of care is possible. However, this issue is bigger than individual doctors and nurses because dehumanization is so engrained in every aspect of medical care under capitalism that it’s impossible to receive care without this guiding logic — it’s “protocol.” On top of it, who are doctors? They tend to come from at the very least a middle-class family, they are often white and operate within white institutions, and they have a superiority complex because medicine is a pretentious field. This is a structural problem that has created a culture of disposability that many doctors are complicit in.

My Dad never recovered from the severe malnutrition which affected his entire body until he eventually died less than a year later. Cancer also played a role in his death and the story is similar. Doctors suspected he had cancer nearly a decade before the swallowing issue, but they insisted that if he did have cancer, it would grow so slowly that it wouldn’t affect him — they bet on him dying before the cancer got bad enough to cause symptoms. Trash doctors made this assumption because he had dementia and the underlying principle of medical institutions regarding people with dementia is that they don’t have a good quality of life so why prolong it. They also believe that the disease itself is deadly, but what is more deadly is the discrimination that people with dementia face. Doctors often don’t offer interventions to people with dementia because they don’t believe that they have a life worth living so these people inevitably pass due to a lack of care. Then doctors use these statistics to say that people with the disease don’t have a long life expectancy, so they don’t offer treatment and the cycle repeats itself (an example of what science and technology studies scholars call co-constitution).

To be clear: just because someone has dementia doesn’t mean they don’t have a good quality of life. They simply relate to the world differently than they did before but that doesn’t mean that they aren’t capable of human emotions such as love, joy, and pleasure. If people with dementia and Alzheimer’s don’t have a good quality of life it’s not because of the disease itself, it’s because of society, and nursing homes play a big role.

Nursing homes are neoliberal institutions. They are often privately owned and understaffed and there is little regulation. Eldercare and neglect is a serious crisis. I was fortunate enough to keep my Dad at home and take care of him myself. He had a great life. He loved going to the beach, restaurants, and the movies. But many people don’t have that luxury and they have no option but to place their loved one in a nursing home. I propose that the Left seriously take up this issue.

Marxists say that society needs to be organized based on human need, not profit, and that workers should be the ones to make decisions over their workplace and work conditions. However, these experiences have taught me that in the case of medical care, elders and people with disabilities need to be the guides. Yes, doctors and nurses are workers but they are workers trained to care for people under a system that doesn’t value human life. The culture of human disposability is so ingrained in medicine that when we remake society in a more just way, doctors and nurses will need to unlearn almost everything they’ve been taught and those who have suffered from these violent medical practices will need to be the architects for new care practices.

As the Left, eldercare and treatment is an issue we must take up. For ourselves and those we love. I won’t forget and I won’t forgive what happened to my Dad but I will work to build something new because that’s the only way to truly arrive at justice.

[Like everything I do, this is dedicated to my Dad, Bill Gavin, who taught me to stand up against injustice and find beauty in everyday things.]

[Lyrics at the beginning are by Noname, from a song titled “Yesterday”]

Eldercare and Capitalism Part Two: “My Experience as a a Certified Nurses’ Aide in Skilled Nursing Facilities” (https://medium.com/@camila-gavinbravo/my-experience-as-a-certified-nurses-aide-in-skilled-nursing-facilities-eldercare-and-capitalism-51ef1b95d60b)