One of the things they never tell you about Long-Term Care is all the opportunities you have to witness the nuances of human behavior. We’ve become very good at compartmentalizing in this modern world…but Long-Term Care doesn’t play by our carefully established rules.
Being a trainer of new staff, I’m in the constant position of witnessing first contact, that moment in which all new CNAs realize how different this strange world of healthcare is. For most, that moment comes the first time they have to completely undress a resident. Some hesitate and stammer; their movements are jerky and their eyes are in constant motion, looking anywhere but where their hands are. Some zero in solely on the task and can’t bring themselves to look the resident in the eyes. Others just barrel through it, so determined to act naturally that they forget to breath or blink…the same approach I took during my first contact. I guess this experience, visceral and disturbingly intimate, brings home all the truths they’ve heard. The nakedness makes it real, just how vulnerable these people are, how much trust they have to place in you…whether they want to or not. Whether they know you or not. Something in you changes, the first time you really confront the naked vulnerability of the people we call “residents”.
Of course, if you focus too narrowly on the CNA, you completely miss the other half of this experience: the resident’s reaction. Some do not react at all, others express their discomfort in minute ways, or try to alleviate the awkwardness for the CNA. It’s strange situation all around.
That strangeness fades after a while…one of the greatest gifts/flaws of the human race is that we can get used to almost anything. We adapt to survive our circumstances. In time, that nakedness, that startling vulnerability transmutes into normality, just another day at work.
I wonder if sometimes we get too used that vulnerability: if instead of becoming accustomed to it, we become numb to it. Even the good CNAs are not immune to this. Just because trust is earned does not mean it should be taken for granted. Trust isn’t a limitless supply we can draw upon, but rather a garden we must tend. My residents have placed into my hands their dignity and their wellbeing; I am the guardian of their humanity–I did not create it, nor can I destroy it. That doesn’t mean I cannot betray them, break their trust in a moment of casual disregard…those moments that stack up to become a habit of unthinking cruelty. When I was writing my first post for CNA Edge (called Perception, located in CNA Edge: Reflections From Year One) I stumbled across another facet of this trust. How could I tell the stories of my experience in Long-Term Care without betraying my residents’ identity and dignity? I was stumped for quite awhile on this issue. True, I had told stories of my residents before, but only to people I trusted or who already knew them. Putting my stories out on a public blog meant that anyone could read them…possibly even people who were related to my residents or whose job it is to uphold HIPAA regulations.
In the end, I acknowledged this struggle, and wrote:
“There is a stigma around talking of work, a stigma that comes from various laws and regulations attached to them. HIPAA looms large over our heads and ties our tongues. Answering the question “What did you do today?” Is like writing a fill-in-the-blanks game…Sometimes the story is in the details and HIPAA forces us to either withhold those details or get creative in the telling. Instead of stories, we relate our days in broad strokes and lump sums: “good”, “bad” and “okay”. Hold the reasons because the “why” is irrevocably tied up with the “who” we’re not allowed to share. HIPAA is in place for a good reason, but exhausted people often do not feel like jumping through hoops to tell a simple story and so CNAs learn to shrug and generalize.”
But writing for this blog meant, of course, that I could not shrug and deal in broad strokes. I was committing myself to telling stories: stories about what it feels like to be an aide on the floor in the current Long-Term Care system. Stories that had to include my residents.
True, I could choose to only tell of my feelings, I could restrict myself to an internal monologue of emotions stirred up by this broken system…I certainly had plenty of feelings waiting to be aired.
I knew this would not be enough. The stories waiting on my fingertips, the stories that needed to be told, were the stories of the residents and my interactions with them; not a monologue but a dialogue. Without my residents, my stories were shadow and not substance, all drama and no depth. I could no more remove the residents from the stories than I could remove them from the system. They are, after, what this is all about: our foundation and our goal. And so I realized that I was committing myself to jumping through hoops, sharing stories of their vulnerability without stripping away their dignity.
That meant rules, a code of conduct that I had to enforce upon myself.
Since working in Long-Term Care, I have come to realize that respect is more about attitude than circumstance. It doesn’t matter what the circumstances of the story are, whether the resident is clothed or naked, dying or screaming, laying in a bed or sitting on the toilet–I have to take a respectful tone. The way I tell my stories has to affirm their humanity.
The point of my stories is not to make myself look good, or to show off my skills as a caregiver. The reason I tell my stories to affect change, to show why change–and fundamental change–is so necessary. That means I can’t flinch away from showing the ugliness of the system and how it negatively impacts the residents…even when that ugliness is reflected in my own face. The other reason I write is to share the unique blend of joy and stress that is being a caregiver. I do not clean up the messiness or dilute the joy.
HIPAA exists to protect sensitive patient data and ensures privacy rights are protected. In compliance with it and my own conscience, I cannot reveal in my stories any identifying details of my residents. These measures include:
1. All names are changed, using the simple system of “Mr/Mrs Letter of the Alphabet”. It is not the first letter of their actual last name. That letter is chosen randomly, by closing my eyes and jabbing my finger down toward the keyboard. Occasionally, I’ll open my eyes to see that I’ve renamed someone “Mrs. #” and have to try again.
2. I try to chose stories that are at least three months old. I’ve got a pretty good memory, but if I’m telling a story that happened years ago, there is a haziness around some of the details. It’s not uncommon that I remember, in great detail, an interaction between myself and a resident, but cannot for the life of me recall that resident’s name. Usually, it is the heart of the interaction that sears itself into my soul, and not surrounding circumstances.
3. Unless it is vitally important to the story, I do not reveal at what point during my career the story is taking place. Among other considerations, this conceals which of the two facilities I’ve worked for is under discussion. Obviously, if it a story about my first few weeks as an aide, this degree of anonymity is negated.
4. Any identifying details are altered. I typically accomplish this by a vagueness around diagnosis and life circumstances. If, as a hypothetical example, I took care of the mother of a local official and I wanted to write about how privilege extends to quality of care, I would be describe the resident’s offspring as “an important member of the community”, without revealing what position that person held. I use the term “dementia” instead of more a detailed diagnosis.
In the end, writing about my residents is rather similar to taking care of them: I just have to remind myself that they are people who do not exist for my convenience or benefit. They are people with their own feelings, their own perspectives and their own human worth. They are people who have, by necessity, placed their trust in me to protect their human dignity.
May the day never come that I forget just what a sacred trust has been placed in my hands.