The water drops creep down the windows in zig-zag patterns casting shadows upon my client’s face as she stares off into the distance at whatever imagery dances within her mind. She is so very far away, though I sit beside her. The familiar, soothing scent of coffee does not comfort her today. The faint sound of political pundits yelling from her husband’s television does not irritate her today. She is here but not here.
She wants to go out, but her body doesn’t cooperate. I see her determination wither away.
Her pain is worse when the skies open up, but she won’t complain. She never does. She stares through her window at the ocean churning with a longing that goes beyond words and a hurt that is beyond my power to heal. She bites back the tears that have the audacity to reach her eyes and almost manages to hide her sad sigh. She’s a tough cookie, this friend within my care. My heart breaks for her because though I’m here, she is in her memories and I can’t be there.
She wryly calls it her anniversary. Sixteen years ago, on this day, life as she knew it changed in an instant. In a flash, everything she thought she knew about her future was gone…just gone. I can’t wrap my mind around the pain and fear she must have felt; the grief of losing all she thought she knew. Still, she never for one second gave up. She fought. She fights still. This year, the battles have gotten harder. Her tough days have gotten tougher, but onward she pushes, one foot in front of the other.
Today, she allows herself to think about what might have been. She allows herself to feel sad and angry at the hand life dealt her during the prime of her life, when she should have been enjoying the fruits of her life’s work. For just a few moments, she gives herself permission to ask “why me”.
I hear the front door open and the tiny footsteps of her three year old granddaughter run through the house. It was a surprise to have a visit so early in the day. I see my client’s eyes snap back to the present in that instant. She squeezes my hand and ruefully shrugs her shoulders as if to shake off the cobwebs of yesterday…I look out the window. It’s still raining, but there are sharp rays of sunshine breaking through the angry clouds and the ocean is no longer churning.
Times like this, I can really see the connection between nursing homes and haunted houses. Both have claims of being the abode of ghosts and, more relevantly, both seem to have innumerable nooks for people to hide in. Well, maybe not hide in, but it does seem like every time I need help, there’s no one there to help me.
I peak around another door, finally finding the person I’ve been looking for.
“Hey, do you have a second?” I say, panting just a bit. It’s been nonstop all day and I’m exhausted. Perhaps if I was only working one shift today, it wouldn’t be so bad, but it’s another double I’m working today. I swear, even my bones ache tonight.
My hall partner looks up from bagging up a brief. “What do you want now?” she grumbles. She’s been a bit…less than friendly with me and looks like she’s running out of patience.
“I need your help to get Mrs. H to bed,” I tell her, glancing at the clock hanging on the wall and immediately wishing I hadn’t. It’s much later than I thought and we still haven’t started our lunches. At this rate, I’ll be clocking back in from lunch just in time to clock out for the shift.
“Mrs. H is a tiny woman,” she says crossly.
“Yeah, but she’s not standing right now. I’m going to have to use the lift to get her in bed and I need a spotter.” Seeing the hesitation on her face, I hasten to add: “I just need help putting her to bed, I can handle the rest from there.”
My partner does not look happy, but she agrees to come help me…although she takes me at my literal word, standing in the doorway while I hook up Mrs. H to the standing lift and maneuver her into the bed. Before I even have the chance to unhook Mrs. H, my partner turns to leave.
“Go to lunch when you’re done,” she calls over her shoulder.
It takes me a few minutes, but I get Mrs. H finished up and head off to the break room. I haven’t had a chance to sit down since my first shift lunch break…many, many hours ago.
Oh, but sweet mercy, it feels good to sit down! I’m too tired to eat, so I just sit back and attempt to become one with the chair. I feel like all my bones have turned to jelly; like I’m going to have to be poured out of this beautiful, gorgeous, wonderful seat.
It’s entirely possible that my brain has checked out for the night, long before my body can. I fish my phone out of my pocket and open Facebook. Even if I can’t eat, I need to do something or I’m going to fall asleep.
It’s sitting there at the top of my newsfeed, only twelve minutes old.
“Worst night ever. Partner is so damn by-the-book and can’t do anything by herself. Seriously, if you’re so lazy or weak, you’re not cut out for this job.”
Twelve minutes old. She must have posted this right after she left Mrs. H’s room. It isn’t until the phone starts to jump in my hand that I realize I’m shaking with anger. What the…I mean, come on! Facebook! By-the-book? Not cut out for this job? Weak because I asked for help with a resident who, while normally one-assist, needed lifting tonight? Would she have rather I took the chance of injuring myself or Mrs. H?
CNAs have one of the highest rates of back injuries among any other profession. Why in the world would we continue to solo-lift residents who are either require two-assist transfers or a mechanical lift?
Minstrel hit the nail on the head with her latest post. There is a “Macho” culture that has sprung up among CNAs—borne, no doubt, from the chronic short-staffed circumstances. Asking for help (and waiting for help) eats up time…time we quite honestly do not have. Every aide is therefore left with a choice: lift and take a chance on hurting yourself or go get help and fall even more behind.
You can start this job with good intentions, decide you’ll never lift a two-assist. That decision wavers the first time you see another aide lift a resident and walk away—apparently unharmed. It crumbles some more when you hear other aides rank each other by their toughness: so-and-so can lift the heaviest resident on her own. Now that’s a good aide!
That decision is left by the way side when you realize that you do not have time to things the “right way” and you take a short-cut. You lift a resident who is explicitly a two-assist. You don’t raise the bed up to change someone. You change the bariatric resident by yourself.
Now you are a good aide, a tough aide. Now you’ve earned the respect of your fellow CNAs.
And when your body succumbs to the strain, when you feel something pop or pull, when you can’t straighten your back without gasping in pain…you pick yourself back up and continue on. You grumble about the conditions that led to this injury, but you are still a good aide, a tough aide and no injury is keeping you down. You don’t have time to be hurt. You’ve seen other CNAs work injured and sick and you applauded them for their toughness. Time to prove your own.
There is, shall we say, an expectation of injury and an attitude of invulnerability at play among CNAs, two ideas that should be contradictory but are held together nonetheless. There is this mentality among Long-Term Care aides, a mentality that says by allowing ourselves to be injured, we have shown ourselves to be weak. Perhaps this is not the right phrasing. Maybe a better way to say this is by allowing ourselves to be affected by our injuries, we have shown ourselves to be sub-par CNAs, weak and “not cut out for this work”.
It’s a tough job, but we’re tougher. Those CNAs who refuse to lift, or who ask for help…these CNAs are mocked and, dare I say, bullied for their caution.
Very little of this, I’m sure, is intended to be malicious. Solo-lifting, after all, ensures that our residents are toileted when they need to be and put to bed when they ask. It ensures that they do not suffer from this broken system. Refusing to solo-lift can be construed as placing your wellbeing above that of a resident…and that’s just selfish.
Whatever the reasons and justifications of any party, the fact remains: the health of CNAs is not treated as a priority…not by management, not by the policy makers and not by the CNAs themselves.
This is a problem. True: the conditions of Long-Term Care are stacked so that injuries among CNAs are high. Yes, the resident to aide ratios are so high that doing things the right way slows you down, very often to the point that you are the last of your shift to leave every single day.
I am a CNA and I do not find it acceptable that I live in expectation of injury. I do not find it acceptable that I have to make a choice between harm done to a resident and harm done to myself. Being “by the book” is my quiet protest of the over-worked conditions of Long-Term Care. If we cut corners and finish on time, but document that we did things ” the right way”, then our complaints of being overwhelmed can be shuffled to the side. “What do you mean, you can’t care for 12 residents? You do it just fine according to my spreadsheet and your charting!”
By solo-lifting two assists, we are not proving our toughness as CNAs: we are enabling the system to exploit us.
Take care of your health. No one else is going to do it for you. This system is not set up to treat the health of CNAs as a precious resource, anymore than it is set up to treat the CNA as a valuable member of the team.
I do not solo-lift and I try to cut as few corners as I can. It is not because I am lazy or weak or not cut out for this job. It is not because I like seeing my residents wait for care. It is because this gesture is one of the few resources at my disposal to show why culture change in Long-Term Care is needed. It is my defiance of a system that exploits me and will throw me away if I break beyond repair.
As an individual, I am easy to ignore and my gesture of defiance easy to overlook. Strength comes in numbers. If every aide refused to cut corners and committed themselves to being “by the book” when it comes to lifting…well, now that would be hard to overlook.
I’d go so far as to say that would be impossible to ignore.
I became a CNA at an age at which most people are retired. By this time most CNAs have backs, knees, shoulders that are broken down or on their way to that. On my first day on the job, the CNA I was shadowing asked, “HOW old are you? You’re never going to be able to do this job.” Biologically speaking, I could have been a grandmother to some aides. But I was in better shape than many, in terms of weight and flexibility. Some aides arrived at work groaning, “My back is killing me!” “My knees are soooo bad today.”
In reality I could do everything a CNA needed to do. But there was one thing I couldn’t / wouldn’t do: move a two-person assist alone. At first the experienced aides helped me. But soon they expected me to care for these residents without help, as they did. There seems to be a machismo culture among aides: “I can do this on my own.” I was saved by the fact that our unit supervisor had posted a list of all residents who needed the assistance of two aides to be moved. When I needed help I asked for it and was given it. But other aides wouldn’t ask me or each other for help, except in the toughest cases.
Who is a two-person assist? A person doesn’t have to weigh much to be a dangerous dead weight when she needs to be moved. Even frail, thin persons become dead weight when they don’t have the bodily strength to stand or the cognitive capacity to follow instructions. The CDC, OSHA and other organizations have developed algorithmic guidelines which state in effect that unless a person is both fully weight-bearing and able to cooperate in the action (that is, able to understand what is needed and able and willing to do what is needed), then the resident needs two persons, sometimes more, and sometimes also requires mechanical equipment, to be lifted, repositioned, transferred. Fellow aides: How often is this the rule of thumb where you work? Given staffing levels, how many of you have time to stop to help others with residents who should, under the guidelines, have the assistance of at least two persons when they are moved? How many of your co-workers have time to help you?
Unfortunately, as far as I’ve been able to learn, failure to provide adequate staffing to ensure two-person assists for all non-weight-bearing residents isn’t an OSHA violation that has any penalty attached to it. This is a guideline and not a mandate. Thus LTC homes might not be as worried about compliance with these guidelines as they are about Medicare rules. But some states might have tighter rules. And guidelines do have some weight in policy-making in LTC homes.
Despite my facility’s two-person assist list and despite all the guidelines, many aides chugged right along, lifting residents without help. Both the resident and the aide are at risk of injury (or at least distress), but aides insist on flying solo. Sometimes we’re our own worst enemies. CNAs: Let’s call a truce with our aching bodies! It’s worth a try to work with our unit supervisors to develop a two-person-assist list, using it to transfer residents more safely and comfortably.
There were hair dryers and curling irons hanging from the ceiling. That was my first impression as my client and I entered the front lobby of a high end salon. With her family reunion coming up, she wanted to look her best and after five days of rain, she was more than ready to get out of the house for a bit. She had a week of poor mobility and high levels of pain because of the weather but come hell or high water, she was going to find a new beauty salon and get her hair done.
My client gets like that. Her sheer determination to achieve a goal often overrides what I think is best. Where she saw gorgeously coiffed hair teased to perfection, I saw transfers in the rain, maneuvering a completely unfamiliar environment for both of us and the potential for her feelings to be hurt like they were by her last stylist. One look at her face was all it took. Sigh. Ok. Let’s do this. So off we went! Despite the rain, her pain and the garden variety challenges, we were women on a mission and would not be deterred.
As we entered the salon, carefully maneuvering around subtly placed displays of make-up and hair supplies, I couldn’t help but be impressed by the atmosphere. There was an artsy, creative feel to the place and the front staff was energetic and engaging. It was a world away from my own regular salon, Great Clips (the price is right, so keep your fingers crossed and hope for the best).
After transferring my client into the shampoo chair, I sat down and took it all in. As I sipped on the cucumber infused water that they offered me (which is every bit as gross as it sounds), I noticed how engaged the stylists were. They were genuinely interested in what my client had to say. When her stylist heard that she used to be a cosmetology teacher, she began to ask her questions and discuss the pros and cons of the beauty field.
My client was given the princess treatment. For three hours, she was simply a former stylist who offered valuable insight and a valued customer. They did and said nothing that made her feel awkward or different from anyone else in there and it was all done with authentic enthusiasm. For three hours, my client forgot her pain and embraced being pampered and I found myself moved to tears, which I hastily wiped away lest it ruin my reputation for being a bad ass.
I write a lot about the apathy I see in this world. I write about the challenges and difficulties and need to overcome. I know all about the struggles we as caregivers face on this journey to improve this flawed and broken system and I want badly to help inspire the change in thinking that will enable these lasting improvements. All of that is hard wired in me, but I have to be honest here. It was beautiful to have this moment to write about this week. This simple, pure event that renewed my spirit and reminded me that there are people in all walks of life that are capable of seeing through the diagnosis to the person beneath. Such a simple thing, a trip to a beauty salon full of genuinely kind people, had a profound personal impact on me. In this world where kids are getting shot, the sick and elderly are so often mistreated, refugees are considered terrorist threats, racism is still a thing, people scream online about guns, and he who must not be named may become president, there are more genuinely kind people who look past the obvious than I realized. In my heartfelt zeal to fight apathy in all its forms, I sometimes forget that there are plenty of people who’s small and daily acts of kindness shout volumes about the goodness inherent in all of us. I do those people a disservice by forgetting that everyone isn’t either a hammer or a nail. To all of you quiet heroes out there, I apologize for my shortsightedness and I thank you for the reminder.
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.
The subject of death comes up often in this line of work. On this blog, Alice and May have visited it on more than one occasion. They have shared how they experienced losing residents they’ve known and cared for, and how they cope with the deep sense of personal loss. These experiences and feelings are echoed every single day in the hallways of LTC facilities and on social media. Death and loss are realities that all caregivers have to deal with at some point. For some, it becomes too much to bear and they leave the field.
Death is also at the heart of the negative public perception of nursing homes. The term itself, nursing home, evokes images of forsaken and forgotten souls, a place where we “stick” people when they are no longer of any use and we don’t want to be bothered with what’s left of them. That even facilities that offer good care and where the residents seem content, are still essentially gilded human warehouses, nice places to go and wait for the inevitable. Abandon hope all ye who enter here.
Those of us who work in direct care know that the reality is not quite that dreary. While we can be the staunchest critics of the nursing home industry – because of what we know about the very real problems – we also know that these places are and can be so much more than just human warehouses. We know that not everyone who enters them is prepared to simply submit and waste away. That sometimes people who have experienced severe neglect on the outside can actually rally after admission. Good medical care, proper diet, therapy, and a sense of community and belonging, can go a long way in restoring a sense of wellbeing and hope. That yes, even here, life goes on.
While good care is essential, it does not address the deeper question of a meaningful existence. Here, in the final stages of life, where comfort is often regarded as the highest value and the will to live runs on sheer momentum, the question arises – and I’m going to be blunt – why bother? Why bother to go on when you no longer feel productive or useful? Why bother when you feel as though you’ve become nothing but a burden? Why bother when you’ve lost so much that you hold so dear? And the toughest question of all: why bother when the end result is going to be the same no matter what you do?
Good caregivers do all they can to address the “why bothers?” Through our awareness of our elders as individuals and by engaging them emotionally, we assure them that if nothing else, they still matter because they matter to us. We can’t give them back everything and we can’t reach everyone, but there are opportunities to make a real difference and we morally obligated to make the most of them.
Still, there is that nagging reality always present in background, the sense of doom and meaninglessness associated with our mortality.
But we are not powerless. First, we have to reject the conventional view of aging: that the final stage of life is less meaningful than everything that comes before it. We need to embrace the idea that we can change, grow and develop right up to the end. And we must stop downgrading the intrinsic value of moments that are experienced during this stage of life. Even to the end, we can retain our capacity to be surprised or fascinated or enthralled, and to value the comic absurdity of life. And we can still lose ourselves in these moments and share them with those around us without reference to some ultimate meaning.
Second, we have to rebel against death itself. Not against its reality, but against its hold on us; against the idea that our fate to die must inform our actions and constrain how we experience life. We need not be held captive to the ego’s revulsion to nonexistence. By liberating ourselves from death’s grip on our being, we are giving ourselves permission to really live.
For our elders, it’s not enough that we tell them that life is still worth living. Instead, as caregivers we must discover what that means to them, in the most specific, practical terms. We must facilitate and share with them, when we can, those things they find meaningful. Each time we do this, we are joining them in their rebellion against death and boldly answer the question “why bother?” And we celebrate with them one more victory in life.
The longer I am in this field the more I realize that in order to truly change the culture of Long Term Care, we must change the way those who are living within the system are viewed. Regulations can be changed. Environments can be improved upon. Staffing levels can be reasonable, but until society begins to see through the physical disabilities and age to the person underneath, such changes, though important and well meaning, is like treating the symptoms rather than curing the disease. This point has become so much clearer to me since I began working in private care.
As an independent caregiver, I have the freedom to do the job as I see fit within very wide margins. Being pretty terrible at setting work boundaries, I find myself in many roles throughout each shift; CNA, housekeeper, family confidant, driver, personal shopper, cook…the list goes on and on and each shift brings new surprises. There is only one client and yet for me it’s every bit as challenging as working in a facility. Working one on one with my client has opened my eyes to how people view those living with disabilities outside of the four walls of a facility. Sometimes, it’s not very pretty.
My client loves baubles. She loves bright colors, and make up and having her hair done professionally. Her appearance matters to her. It always has. Religiously, once a month she goes to a particular salon and has her hair washed, colored and styled. She has been doing this with the same stylist for five years. Now, this particular stylist knows that my client suffered an immediate and life altering change to her health sixteen years ago. She sees the effort it takes for her to transfer from her wheelchair to the shampoo chair and back again. She knows that on my clients tougher days, when it takes all she has to get dressed, it is the idea of her beauty days that pushes her through that pain. I’ve told her that myself.
It’s a splurge. It’s not a cheap salon and this hair stylist is always tipped well. Getting beautified is one of the few good things that has remained a constant from the time before my client fell ill. It takes her more effort, but it is well worth it. So you can imagine my fury when I received a call from my co-worker informing me that this hair stylist would no longer be taking appointments from my client because she was fifteen minutes late. This hair stylist to whom my client had formed an attachment, despite what I considered to be her snarky attitude, who had NO problem gushing over her tips and taking her money, was put out. She did not bother to tell this to my client. No. She told it to my co-worker who, like myself, does not have the heart to tell her.
Look. I understand that we all have lives and a client being late for an appointment can cause inconveniences to whomever is providing a service but if you are incapable of taking on those with physical challenges, then DON’T TAKE THEM ON. When my client is going to be late for appointments, we call. After so many years, the very least she could have done was have enough respect to have a conversation with her about it.
It was such a clear example of apathy. I realize that it’s not cruelty that causes such slights, but the damage done from it is the same. It’s an example of the self-centeredness that we all have within us in one form or another. Even those who are closest to my client are subconsciously guilty of this thinking. How much is my client going to slow them down if they take her with them? Is there room in the car to pack all of her necessities? Is it worth the effort when she will be so exhausted the next day?…they see all the obstacles and none of the opportunities and in so doing, they diminish her humanity and reduce her to little more than “person with disability”.
I look at people through the lens of a caregiver. There is not a single person on the face of this earth who doesn’t have obstacles or challenges. Most have the luxury of wearing them on the inside. The downside to that is that too often, they forget those wounds exist and begin to convince themselves that they are a part of a group lucky enough to be normal. Allow me to disabuse those of you in that category of that notion. There is no normal. It’s imaginary. The only thing that separates you from those in my care is circumstance or age.
If I had to pick one lesson that I would like people to learn from my posts, it would be this: We are all human. Separating yourself from the way you view those in our care may make you feel safer or more comfortable but you do yourselves a disservice. One day, you will age out too, if you’re lucky enough to maintain your health. Ask yourself this: How would you want to be seen? As an “invalid”? A burden? As someone who has “outlived usefulness? As a bed filled to keep census up? As a cause? As part of a group to be pitied?…I wouldn’t. I would want to be seen as a person first. As Alice. And I would hope that all of those who were fighting for my rights would take the time to actually ask me my opinion of the system and what I think would be an improvement. I would hope my loved ones would see me before my disability and I would hope that an overpaid hair stylist would have the decency to tell me to my face that she no longer wants to do my hair.
One of my all-time favorite movie lines was spoken by Paul Newman in Cool Hand Luke. Luke, the non-conforming prisoner in a tough southern prison, refuses to accept the prison’s status quo. His conduct is a cascade of rebelliousness, until finally the warden orders Luke to “the box.” The box is a small tin-roofed building, the size of an outhouse, under the blazing sun in the middle of the hot, dry prison yard. After Luke spends twenty-four punishing hours in the box, the guard releases him. As he does he says, “Sorry Luke, I’m just doin’ my job. Ya got to appreciate that.” Luke replies, “Nah, callin’ it your job don’t make it right, Boss.”
Calling it our job doesn’t make things right. Among the most pernicious problems in long-termcare homes is staffing shortages. With a census of 25 to 35 residents or patients needing skilled nursing and/or dementia care, there might be only three to five aides scheduled to work a shift. (Then there are the last-minute call-outs). If the aide is lucky, very lucky, she may have only five or six persons to care for. The more frequent reality is having seven to ten persons needing care. Remember that cacophony of call bells that May wrote about? Blame it on short-staffing. And the resident pleading for you to take her to the toilet? Oops, it’s already too late… The resident teetering perilously as we rush to prevent a fall? … And the time you lifted a non-ambulatory person by yourself because there was no one around to help? What about those wheelchair bound residents who haven’t been taken out to feel the fresh air in weeks? The hits just keep on comin’. And we keep right on keepin’ on, because it’s our job; right?
No, it isn’t. We simply can’t do our jobs as CNAs adequately when we’re so understaffed. What most determines the quality of care is the staff-to-resident ratios (‘duh’). I challenge anyone to find an aide who disagrees with this. Yes, staff need to be trained in good care practices. Yes, we need to have certain supplies available (soap, towels, functioning hospital beds, appealing food, etc.). But the key to quality care, to person-centered care is PERSONS. Staff.
We continue to work in short-staffed conditions we know violate our residents’ right to good care. (See medicare.gov for a description of rights of persons in nursing homes.) If we ‘complain’ to management about short staffing (and that’s how it’s viewed, as a petty complaint), we’re told sweetly that the staffing levels meet the state requirements. And that’s probably true, because industry lobbyists have made sure that state regulators don’t burden the long-term-care industry with costly staffing requirements.
We complain about these deplorable conditions all the time. As CNAs we’re mandated reporters of abuse. (I guess we’d better not think about that one too much!) But we tolerate abuse that residents endure as a result of understaffing. Abuse isn’t just about physical or sexual assault. It’s also about neglect and emotional abuse. If I neglect a call bell for so long that a resident is left to soil himself and remain in his soiled condition for hours, that is abuse. If I say to a resident who asks to be taken to the toilet, “Janie, I just put a clean Depends on you; I can’t get you back into the Hoyer lift and take you to the toilet, you have a diaper on, you can use that,” that is abuse. Abuse is ridiculing a resident who cries for her mother all afternoon; scolding a resident who spills her drink all over the floor; ignoring the call bell of a resident who constantly asks to be taken to the toilet minutes after the last toilet trip, because we know she ‘doesn’t really have to go.’ Well, she needs something and it’s our job as aides to find out what. “But I don’t have time for all that. I have seven other residents to get to. I’m just doin’ my job.”
So what can we do? Unlike the workers of the 1920’s and ’30’s, we can’t go on strike to win better working conditions. We’re caring for the sick and the frail, not assembling cars. But if we can’t leave the floor for a sit-down strike, we can use our cell phones as weapons in the revolution for better care. Call your county or state abuse hotline every time aides have more than six residents to care for on a shift. (And don’t count the LPN or Medication Aide in your ratio if she isn’t providing care, even if management does.) The state regulators aren’t always thrilled to receive reports of abuse because they are short-staffed too, and don’t have the means to investigate all complaints properly. They don’t always to a good job, for the same reasons we don’t always: because they’re understaffed and a little intimidated by their bosses.
Revolution isn’t about violence and nastiness. (Remember Gandhi and Mandela and Rosa Parks.) It’s about patient persistence and never giving up as long as change is needed. It means taking that first step. Maybe our first step will be a phone call.
Sometimes I have to dig deep within to find the strength to carry on. I don’t get to give up. It’s a luxury that as a caregiver…as a PERSON, I simply can not afford. It’s really a mixed blessing.
On the one hand, I have my days that I WANT to just fall apart. The tough days, when my personal life is in chaos and my client’s husband is feeling a strong need to express his political views loudly and my client is in pain that no medication can touch…those days bring a feeling of powerlessness that makes it hard for me to breathe. I feel trapped by circumstance and very very small. Emotions that I do not have the time to deal with begin to distort my perception. Those are the lonely days. The grey days that make me want to curl up into a ball of self pity and resent the world for not bending itself to my personal whims and preferences.
On the other hand, I am blessed to work with a demographic of the population who’s very existence is an education in courage. They are the definition of perseverance. My love for these people has defined and honed who I am on a deeply fundamental level. How can I feel anything but grateful when so much of my life is engaged with people who overcome obstacles and live through challenges that I can only imagine? I have a daily reminder not to mistake convenience for necessity.
I used to just brush my emotions aside. Once I got through the tough shifts and started to feel better, I didn’t see the need to think about it. It’s easy for me to focus on what I love about this gig and my own life. I would minimize my negative feelings. I’m known as “Little Miss Sunshine” for God sake! I don’t get to be sad or angry or frustrated or hurt. Those emotions are for mere mortals!
The truth of the matter is that never works. Ignoring a fact does not mean the fact does not exist. And I’ve learned slowly, through much experience that my feelings are no less valid than anyone else’s and that I matter too. If I find myself feeling like I don’t, it’s time to reflect on the reasoning behind it and make some changes.
I depend on the people who depend on me. That leads to one of two roads; co-dependency or growth. Today I choose the latter. In order to grow from others, I have to be honest with myself. I have to acknowledge my emotions, good or bad, see them for what they are and then let them go.
Sometimes I swear the nursing home is secretly a crucible—with myself as the bit of iron being refined and beaten into steel. Maybe I’ll come out of this stronger, or maybe I’ll shatter under pressure. Sometimes I wonder what is being purged from my being…I know something is gone from my soul, gone or altered so fundamentally that it might as well disappeared.
What is burning in that fire? Is it only weakness, my selfishness, naïveté and arrogance or am I also losing bits of my compassion, my patience, all the soft parts of me? I feel harder, more brittle. Anger comes quickly, if I let it. I’ve seen so much ugliness, so much injustice and been dismissed so many times; I’ve learned by example how you dull the voice of your conscience. I have an edge I never had before, a sharpness where I was once fluid. I am weary in a way I wasn’t before. Sometimes it feels as though my youth has been a sacrifice. I meant to lay it on the altar for God and the ones I care for, but those ruled by greed and apathy keep trying to snatch it away for themselves. I’m tired and never far from sorrow.
Sometimes I miss the person I was before. In my years as an aide, I’ve shed so much of my innocence. Also, the time and energy I give to my work have held back my own stories. Change may come to this broken system, but not soon enough to save me from the bitter taste of burnout. Some days I can’t help but resent that. I remember one time being so frustrated and raging to my mother about the unfairness of it all; I remember she told me being a CNA had changed me, that I had both lost and gained from the experience. I asked her to give me the bad.
I never asked her how it had made me better. It wasn’t what I needed at the time: I needed to feel the cold water of my own failings…needed to remember my own flawed nature, that I wasn’t perfect or passive.
And I needed to decide for myself what I had gained.
When there are worlds and words swirling endlessly inside your head, it’s easy to get lost inside yourself, to distance yourself from other people. I was absorbed in myself and my stories, before caregiving forced me out of my head and into the stories of others. If you can put yourself in another person’s place and feel what they are feeling, it makes care go so much better–especially if there is a barrier of communication like aphasia. I am a better storyteller now for having learned to put aside my own perspective. My stories have a depth they did not before, back when I still thought I was the center of the universe.
I used to be so afraid of my own mortality…terrified that one day I’d be gone from this world and would have done nothing to mark my existence. I was so scared to be forgotten, until I held the hand of a dying woman and recited the Lord’s Prayer with her. She took that fear with her when she left this world. I have a confidence I didn’t have been.
Before I was a CNA, I thought strength meant stature and a rigidity of will. I thought only the unbreakable and the bold were strong. I didn’t realize that true strength…that’s resilience, to have your heart broken and your dreams shattered and then get right back up to go again. Until I was surrounded by fellow caregivers, I did not appreciate that strength is a dance between confidence and humility: a willingness to bend when necessary and wisdom to know when to stand your ground.
I’m the kind of person who needs a crusade, something bigger than myself to feel satisfied with my life. I’m not content to let injustice go unchallenged or to allow the dignity of a person to be disregarded, no matter how much they “contribute” to society or how much of an “inconvenience” meeting their needs causes. Whatever other heartaches and frustrations come with it, being a caregiver has certainly given me a crusade to fill a lifetime or more.
In the end, it’s heart-breaking, life-affirming trade. Everything I am, I became…or rather I am only who I became. What I lost I surrendered, and what I gained I was given. What I have retained, that I earned.