Caregiving Work is Essential. What About Caregivers?

Abē Ross Levine
7 min readDec 17, 2020

Brushing teeth, prepping food, helping with mobility and transportation- these are all activities that caregivers clients with. Caregivers work with people to complete daily living tasks and also stay connected to the broader community. Professionally, their titles include personal care assistant, homemaker, and certified nursing assistant among others, with care functions varying from house maintenance to physical and medical needs. Often, people get into this field through care for a family member or begin care for someone connected to them through family or friends — caregivers I spoke to mentioned caring for their grandma, a cousin, and kids at a summer camp as initial jobs. The work can be general or highly specialized including tasks such as dressing wounds. Katey DeCelle’s first PCA was caring for a woman who had a recent diagnosis of Multiple Sclerosis that progressed quickly. It was her first time caring for someone. “It was quite a shock,” she said. “As an 18 year old kid having no experience. Now I’ve got to put this woman on a lift and bathe her, and dress her wounds.”

Decelle with Heise at Como Regional Park on July 25, 2019. Photo taken by DeCelle.

Though the caregivers I interviewed did not have any shared group affiliation, they shared overlapping experiences with common information needs and concerns. For caregivers who work in elderly homes, or long term care facilities, lack of staff was a significant concern. Becky Warne-Grondahl, a certified nursing assistant said, “They have much more time alone and very little to look forward to,” of her clients, given that all routine group gathering times have been cancelled. She also noted that care facilities where she lives in northern Minnesota are persistently understaffed. DeCelle, having worked with autistic clients, also expressed concern about people with intellectual or developmental disabilities. She said that before everything shut down, that she had organized an adaptive recreation day, and that people were so excited to see one another. She worries that without such activities and piece work that IDD people will face increasing mental health challenges due to a lack of routine and increased isolation.

Because caregiving work is done directly with clients, without supervision, PCA’s professional relationships are often limited to interactions with their clients. Though a union does exist — SEIU Healthcare Minnesota, communications with PCA’s can be limited. DeCelle said that she had been contacted about elections, though not much beyond that. However, SEIU does offer trainings, for which caregivers can receive stipends. Moreover, the SEIU just successfully lobbied the Minn legislature during a special session for a temporary increase to caregiver wages. These kinds of updates along with changes in the contract negotiated with the state of Minnesota could be better communicated.

Another layer of information pertains to care itself. Maia Walter, a PCA for Mary McMenamy, discussed how each time a person gets a new PCA both the client and the caregiver have to start from 0 in regards to knowing care routines. Walter has compiled a binder with specific notes and information for McMenamy and says it could be helpful if this information existed somewhere. And Calista Adiboye said that she received a training session that lasted about three minutes when it came time to care for a client’s leg, which had shrapnel coming out due to a war wound. It would’ve been helpful if there was someone they could’ve talked to regarding the care process.

McMenamy and Walter get into plank position as part of a workout. In this video uploaded to facebook by McMenamy, she says, “So, what are you guys doing while you’re in social isolation? Screenshot

Caregivers are underpaid, or at the very least, not paid well. In Minnesota, caregivers earn between $11 and $13 on average. And under the PCA choice program, clients set the wage and hours of their PCAs, rather than an agency. This gives a client more power in choosing a PCA that fits well with their needs and acts professionally, though it could result in a PCA being paid less. “So many caregivers that don’t care because they’re not paid enough to,” Walter said. They said that they understood why people would prefer to work retail, but that they preferred work that allowed them to be of service. Adiboye said that they’ve been concerned that PCAs have not gotten paid sick time or received proper PPE during the pandemic. Walter didn’t receive an appropriate mask until June.

It seems that a good place to begin building an ecosystem of information and support would be to establish a forum for caregivers to gather. I’ve found inspiration in the social journalism presentations from the class of 2020 along these lines. Karla Arroyo developed a newsletter as a platform to build power and celebration of hair for women of color, and to generate support for the Crown Act. There women could also share experiences of discrimination due to their natural hair. I wonder about developing a similar platform for caregivers, or perhaps starting with a Facebook group — a place where caregivers could ask each other questions, share experiences, and also see content related to their field and to union activities.

Not all caregivers see the point of organizing for improved work conditions. And this is a conflict in the community. The people I spoke to do this work because they find integral value in the relationships they form in the work through the care they provide. But others simply treat caregiving as a job, or at worse abuse the position. The conflict here is about generating a critical mass of support for improving the conditions of the job, if that will exists.

Social Engagement Tools

Prior to coming to Newmark, I wasn’t familiar with the approach of engagement journalism. I had taken an open (free) course from Newmark about the idea of an “open newsroom” prior to beginning my studies called “People-Powered Journalism.” The presenter, Jennifer Brandel, shared how in Chicago she helped to create a pathway to allow anyone to pose a question, such as how water was made potable, which could then be investigated. In this model, rather than the reporter deciding the story that needs to be told; the reporter and newsroom take time to understand a community’s concerns and respond to them.

As I progressed in my first semester, I came to understand that journalism can be about more than writing great, Pulitzer-winning stories. The journalistic process can be about developing enduring relationships with the people one meets in the process of reporting. That really understanding someone and the community they’re a part of take time, deep listening, and a desire to find ways that one’s journalism can contribute to helping a community solve problems, redress wrongs, or heal.

Inherent in caregiving work are some of the same principals. Developing trust in caregiver-client relationships takes time and a curiosity about how to support someone. Some of the tools we’ve learned remind me of community organizing. In Carla Murphy’s piece, “Why we need a working class media,” she discusses the need to create content that reaches working class people, and builds on the experiences of people like her. “Rarely do I see stories by, about, or for people like me: people who are working class and black and immigrant and woman or woman-identified,” she writes. Many of the people who do caregiving work are immigrants and/or women of color. It’s critical to determine who I’m writing for and to place their concerns and experiences at the center and to approach my interviewing and research with humility.

Another helpful tool is the approach of design thinking. In looking at some of the key needs for this community: greater advocacy around salary, more substantive support, and opportunities for growth and development, it’s been helpful to look at the different systems that affect caregiving work. Underlying structures can include social and cultural attitudes about caregiving work as being easy or expected, especially for women. Writing about caregiving requires challenging notions about certain populations being disposable or less worthy of attention such as elderly and disabled folks. And also to make changes and direct research, it can be helpful to map out how agencies, policies, and underlying communication channels shape the context in which caregiving happens.

Ultimately, I’d like to get a place where I could help set a citizen’s agenda. In an article written by Jay Rosen, he turns the idea of a political debate on its head. Rather than creating a forum for politicians to offer canned answers on issues that may be charged but have less impact on a place or population, Rosen presents a process for asking locals, in this case, residents of New Hampshire to determine their priorities and greatest concerns when selecting representatives. Those priorities then inform how a newsroom covers the election and tracks candidate stances. I’m not entirely sure how this work differs from organizing, except that in the case of journalism, a newsroom is largely conducting research, and getting questions out there, rather than advocating for a particular issue, position, or candidate. In the case of my work, it would be caregivers setting an agenda for how they want to see their work evolve and also for clients to have a greater voice in the conditions of their care and the capacities of their caregivers.

For now, I hope to continue follow what advocacy is happening for caregivers around the country and what steps other health care worker unions are taking that could be applied here. Caregivers are resourceful and persistent in their work, and their commitment to helping people live well needs to be better understood as an integral part of an interdependent society.



Abē Ross Levine

Abē he holds a masters degree in journalism @newmarkjschool. Topics of interest include food, environmental and racial justice, and being more human.