I am a person. I am not dementia. I am not diabetes. I am not simply a resident or client. I am not a care plan or a two person assist. I am not room 242 needs something for agitation.
I was a dancer. An ambassador. I fought for this country. I was a nurse. An engineer. I am a mother, son, daughter, sister. I am dying but I’m not dead yet. You make rules and say they are to protect me, and yet you don’t see me. You don’t ask me what I think. I am one more blurred face. I am one more bed filled. I am a number on a census.
Your voice and demeanor change when my family visits. Suddenly, we’re pals. Suddenly you are filled with concern but if I were to ask you how I slept last night or what my biggest fears were, or my favorite color or pet peeves, you wouldn’t know. That’s beneath your pay grade. That’s for the caregivers, if I’m lucky enough to have a good one that you doesn’t run off in search of greener pastures. And I don’t think you realize how truly demeaning it is to not be seen as an individual; how, more than anything else, the minimizing of who I am as a person to a checklist robs me of my dignity. There shouldn’t have to be a list of patient rights in order to be seen as a human being. Is there a more important rule than that? It shouldn’t be so complicated.
The higher up the food chain you are in this field the further you are removed from the people for whom it exists and the legislators making the calls are about as high up as one can get. The best way to find out how to improve the quality of life is to ask those who receive and provide the hands on care. It’s a no brainer.
I do not understand why anyone would continue in this career if they don’t have a love for what they do. It’s not the money. It certainly isn’t the respect. I cannot tell you how many times I’ve heard a nurse offhandedly tell a caregiver that being a nurse is hard, that there are so many responsibilities; The unintentional implication being that we don’t know how good we have it. And I don’t doubt that the nursing field has challenges and rewards that I haven’t experienced as a caregiver but unless a nurse has experience as a CNA in a Long Term Care facility, the reverse is true as well.
I have developed a set of ideals, skills and standards that I consider both invaluable to being a quality caregiver and highly overlooked by the system at large. None of these skills include excellent hospital corners or perfectly folded laundry, both skills with which I could use improvement. It’s not that I consider those parts of the job without value; it’s just the least important of the skills we need to provide quality care and often the first noticed when the hall is inspected by supervisors.
“Did you make the bed in room 237?”, demands an imaginary boss I created to express this point.
“No not yet. Agnes is freaking out because she thinks Ida stole her dog and she’s refusing to let anyone but me in her room…let me just…” make-believe me replied.
“Are you kidding me?! The OWNER is on his way and he wants this hall to LOOK perfect. Leave her. She’ll be fine. Go make sure all the beds are made.”
Now, I made that scenario up. I’ve never actually had anyone named Agnes or Ida in my care. But I have had countless experiences with some version of the above situation; enough for me to know that the priorities in these facilities are WAY off the mark.
The residents come first. It is up to us as caregivers to make certain that is not just lip service. And let’s be really honest here, the top of the hierarchy in these facilities view it as a business. The amount of money it costs a month for an apartment here is mind boggling. I work in a really nice place that almost no one could afford. That is the sad truth. I’m not implying that these corporations shouldn’t take in a profit and I’m not saying that the one in which I work isn’t a decent place. What I am saying is that in the ten years I’ve worked in this field, with varying degrees of severity, the issues in each facility have always been the same; have always branched from the same root. Everyone pays attention to playing their own instrument without considering what it takes to create a symphony. So we end up with a cacophony of noise instead of harmonious music.
I’ve learned through the years that I personally understand the value and necessity in what we do better than the state surveyors. The seem to have a very limited scope of what is deemed important. So I don’t limit myself to their standards, many of which seem silly and misplaced and others that do not reach nearly far enough. It’s as if they have one fixed idea of who lives in these facilities and no ability to get to know the vast array of individuals living with a myriad of challenges, both physical and mental. No interest or time to get to know the residents or those of us who care for them. So I don’t flinch when they arrive to dot some “I”s and cross some “T”‘s.
I am in this gig because I SEE people. There has been much I’ve had to learn and skills that I’ve had to improve upon. My ability to see beyond an age or disability to the person beneath is not one of them. For whatever reason, that part of the job is innate for me. I love seeing bravery in action. I love the stories. I love going to sleep knowing I make a tangible difference in the life of others. I love that I’m never bored. I love that there will always be something new to learn. With people, there always is. These are my whys. Because I know them, have defined them for myself no one can devalue my job. I am not confused why I’m in this field and that has made all the difference. It’s prevented frustration from turning to resentment. It’s inspired me to continue to try to improve the system. It’s opened the door to be both teacher and student and has saved me from becoming jaded from burn out. I defined my career. I didn’t allow someone with little knowledge of it to do it for me simply because they had a degree on the wall. So I would like to know your “why’s” readers. Whatever role you play in the long term care system, what motivates you? What keeps you coming back? And how do you think we can work together to fix what’s broken?
The alarm clock cut through my dreams, it’s deceptively cheery jingle jarring my consciousness awake. I groaned, fighting the urge to hit the snooze button just once more. I had to go in early. No more time to snooze.
As I ran about the apartment in my pre-work routine of craziness, grabbing coffee, hunting my keys and making sure that I was wearing the same shoes on my feet, I mentally reviewed the day ahead. It was going to be an uphill battle.
Uphill battles are nothing new to me in this field. Both my experience in facilities and in private care have come with their fair share of obstacles. Not being one to shy away from adversity, more often than not I relish the challenges. It’s when I begin to view life as NOTHING but uphill battles that the trouble begins.
As a caregiver, I deal with a lot of loss. We all do. Death is inevitably part of our job. I’ve learned to view it not as a tragic necessity but as an inevitable conclusion. There is joy and peace in knowing that I have a part in making the last chapter of someone’s life as pleasant as possible, making certain that those in my care never feel alone. It is why I do what I do and that part of the gig I consider sacred.
As a woman in recovery who volunteers at a behavioral health center, I deal with a lot of loss as well. That kind of loss is different somehow. That kind of loss comes with a sort of survivors guilt that makes me choke on my own powerlessness. Why do I get this when others don’t? What could I have said or done differently that may have prevented another’s death or insanity or consequences? The answer is nothing. I can’t force a moment of clarity on another person. I can only share my experience.
I tell you guys this because I know we all have our baggage and we work in a field that can skew our perspective. Because I have to be vigilant, I recognize that change as it’s happening. When I start obsessing over the two people I was unable to help rather than the ten that I was, I know I need to check myself.
I cashed in all my “give up” chips years ago. Now as long as there is a breath in me, I will…I MUST keep moving forward. There is so much I want to do in life; so many people I want to reach and help. My fellow caregivers, my residents, anyone and everyone who feels lost and alone…we all have those shared experiences. I was given a second chance. I do not have the luxury of wasting it.
As a caregiver, I have the privilege of seeing the face of courage every shift. People who have survived cataclysmic and life changing events. People living with dementia, addiction, AIDS, strokes, PTSD, cerebral palsy; people of all ages and I SEE them…the very essence of who they are as individuals shine through their disorders. Their personalities, sometimes difficult personalities, may have been informed by their challenges but they are not defined by them. They laugh and cry and occasionally rage but they face their uphill battles every single day. They have no choice. Neither do I.
My keys were in hand, the same shoes were on my feet, my lid was tightly on my coffee cup and I was ready to face the day. I took a deep breath as I opened the door into the bright sunshine and reminded myself that it was uphill battles that made me who I am today. For that I am incredibly grateful.
“She needs to do better about taking care of her gums. You need to help her with that. And make sure she uses an electric toothbrush.”…My growing anger at this woman, whom I had to assume had advanced degrees in order to be a dentist, drowned out the rest of what she said. I had spent the last half hour listening to her lecture my client through me, as if she was completely unaware that the woman was an adult with a fully functional mind of her own. Does this dentist think that because she is in a wheelchair, my client is incapable of following simple instructions?
First, I had to battle the rush of misplaced guilt. My client has a very lengthy oral care routine that she does twice a day. It is one of the tasks that brings her comfort. I assist her as needed, but I am a firm believer in fostering independence. Second, she HATES the electric toothbrush. Third, it would take more than mildly tender gums for me to rob a woman who is in her right mind of her dignity by insisting that I do for her what she is capable of accomplishing for herself. Fourth, if a professional in the medical field cannot direct their questions to their patient simply because she is in a wheelchair, then they need to go back to school and learn the basics of human decency. I caught a good case of the mads over that day. After an entire shift of inner fuming, I realized that my frustration served no purpose and I would have to get glad in the same pants I got mad in. So when I got home, I reflected on the experience.
I think what irritates me the most about it was that it was not a unique situation. It is as if a person reaches a certain age or level of disability and suddenly they speak a different language. Administrators from my work in the facilities would talk through the caregivers to the residents all the time. Doctors, family members, friends, all well meaning but cluelessly communicating AT those living with a disability or the elderly in our care without pausing to include them. How can you ever feel comfortable when almost everyone talks at or around you? How invisible and irrelevant would you feel? I would be constantly screaming inside.
I KNOW this. It’s not an awareness that I had to learn. For whatever reason, that part of the gig comes very naturally to me. For others, they gain it on the floor or through one on one care. I have yet to meet a caregiver that doesn’t on some level feel the frustration that comes from people not listening to the voices of those within their care; from the utter lack of understanding and misconceptions that those, and often those in authority, seem to have for those whose very lives are in their hands.
Getting angry is not the way to solve a problem. Becoming aware is the key. So I put aside my anger at the dentist and really thought about how that interaction played into the big picture. When I took into account that most people are well meaning and such thoughtlessness is not done with malice, my mind kept circling around the idea of a foreign language. They simply don’t speak the language of the elderly or the disabled. We do. If I accept that as fact, then the next logical step is to realize that one of the most important roles in our work is to be translators.
After you read this, close your eyes for a moment. Imagine the most painful moment of your life, your biggest fears or parts of yourself about which you may carry embarrassment or shame. Think about your deepest insecurities and the way you secretly fear people may think of you. We all have those dark places. I’m asking you to find yours for a moment and feel the emotions that come from that…now imagine if everyone was able to see all of those wounds all the time…imagine if some people ONLY saw those wounds. Now ask yourself, how would YOU want to be seen? How would you want to be treated? As caregivers, we see beneath the service. As translators, we must teach others how to do the same.
In reaction to the Trump administration’s recent immigration ban, Lori Porter, founder and CEO of the National Association of Health Care Assistants, pointed out a connection between the immigration issue and LTC staffing levels. In a recent Facebook post, she stated:
“A large percentage of CNAs are from the banned countries. Long Term Care is always testifying before congress for immigration to solve their staffing issue… I know nursing homes in this country who are largely staffed by those affected. Did anyone stop to think about who would care for the residents? Especially in a country who will not come out in sufficient numbers to take care of their own OLD citizens! … I have heard from nursing homes all day who will not have enough CNAs to staff their building because so many CNAs have left out of fear.”
In support of Lori Porter’s assessment, we do know two facts: that over 50 percent of CNAs leave their jobs every year (PHI Factsheet) and over 20 percent of caregivers in the U.S. were not born in this country (Market Watch).
My concerned is about the vulnerability of caregivers coming into this country on work visas, especially if their legal status is tied to their employment. Since advocating for our elders is such a big part of what we do as caregivers, we need workers who feel secure enough to speak out within the facility and, when appropriate, in the public forum. Sometimes, we are the last line of defense for our residents and if we do not speak, no one will. Too often, incidents and issues that should be dealt with in the open are swept under the rug, mainly out of fear of some form of retaliation.
If Long Term Care is to rely on immigration to solve the caregiver shortage in this country, what kind of protections can we provide these workers so that they feel secure enough to speak out and advocate for our elders when necessary?
Throw me in the trenches. Put me in the most challenging situations; places that no one in their right mind would stay for any length of time. Throw me into a household where the family’s ideals are vastly different than my own and my client’s husband needs almost as much care as she does. Let it be a reminder to me that we are all more than one thing and I don’t pick the traits or opinions of those within my care. My job is to foster their independence, not to dictate what that should look like.
Surround me with those who have lived so long believing that they were broken that they have lost hope so that I can remind them of who they are beyond their disorder.
While it’s true that I have my moments when I wistfully wonder what it would be like to work in a well run facility where everyone is treated well from the residents on up or for an agency without the complications that arise from being an independent home caregiver solely responsible for setting my own work boundaries, I know in my heart of hearts that is not where I am meant to be…at least for now.
I cut my teeth in caregiving in a facility on which I later blew the whistle. It was there that I saw the deep flaws in the Long Term Care system. It was there that I learned the value and depth to be found in our field. It was through trying to improve that particular facility that I realized that the problems were much bigger than one place and that creating real and lasting change would be a marathon, not a sprint. It was through my journey into private care that I was forced to set work boundaries. It’s given me the freedom to really explore the depth in which good quality care can impact not just my client but also her family. There are times when the long hours in a small environment with only my client and her husband test my patience, but it has also strengthened my ability to redirect and listen on a deeper level. It has forced me to think outside of what I know in order to be a better and more effective caregiver.
The truth is I don’t want to forget. I don’t want to be so far removed from the problems that I forget why I began this journey in the first place. So, for now, I choose to stay in the trenches. It’s where I can do the most good. Some people can’t see the forest for the trees. Some can’t see the trees for the forest. I see the forest and I will spend my life in a variety of ways and levels trying to improve it, but I must never forget that it is the individual trees that make up the forest who inspired in me the will to fight in the first place.
The thoughts flit through my mind at a dizzying pace, a kaleidoscope of colors and frenzied impressions that dance around the idea of what could be and what already is. We are in New Orleans. The Big Easy. A city that has no shortage of whimsy and magic in its own right but to be here to present to the world our writing? To be given a platform in which we can shout our truths in the hopes of reaching others on our path to deep, meaningful and lasting change?…that’s surreal.
It wasn’t an accident that I chose “Alice” for my pseudonym. As a child, Alice in Wonderland was my least favorite fairytale. It made no sense. I much preferred Robin Hood. Now THAT was a story I could sink my teeth into. So, it came as a quite a surprise to me that after a great amount of life experience, I awoke one day in my mid thirties only to realize that my LIFE was wonderland and I am indeed Alice.
Call it fate, providence or synchronicity, I never believed it was an accident that I crossed paths with Yang and May. The odds of meeting two like minded caregivers across the country with such an amazing talent for writing and dedication to expressing truth and impacting change would be slim in any case, but the fact that we have worked together fluidly for two years without meeting one another until this week? The fact that our different styles and voices flow together in a way that is harmonious rather than clashing? The odds of us being offered such an opportunity by the Pioneer Network to speak out and reach others? No. That is more than coincidental.
Sir Arthur Conan Doyle said that if you eliminate the impossible, whatever remains, however improbable, must be the truth. The truth, as I see it, is this: We are on a path that is uniquely suited to us. We have not only the opportunity but the obligation to follow through to wherever this journey may lead and in doing so, we will impact the lives of the most vulnerable among us for the better. We will impact our OWN lives for the better and what we learn on the way will forever enrich us in ways that we cannot imagine. This I know to be true.
Lasting change may not happen on my timeframe but it does happen. I cannot properly express how grateful I am to the Pioneer Network, everyone involved and all who attended, for seeing in us the message that fits so perfectly with their vision or Yang and May for being such a vital part of my life or how much hope our collaboration has brought me these past two years. I only know that the three of us will continue to speak our truths, shouting it when necessary and as much as we can, be the voice for those locked in this deeply flawed system. We will never give up. Of that, I am absolutely certain.
As I sit outside, watching this whimsical city in all its wonders, I feel bittersweet about leaving in the morning. This conference has been the biggest and most fulfilling achievement of my life and it’s sad that it’s almost over. But in my heart of hearts I know it is but the first step of a journey that is sure to be a thousand miles and I am so excited to be a part of whatever comes next. In the meantime, we will continue to write and remind you, our readers…our friends, that each and every one of you matter and each and every one of you can and do make a difference. So don’t ever let the world convince you otherwise. Shine on, my friends!
I don’t know how to live my life right now. EVERYTHING seems new. Opportunities abound and I feel such a potential for life’s possibilities. I started writing for this blog because I didn’t think it was ok for the system to collectively mistreat the most vulnerable among us and blowing the whistle on one facility did not have the effect I had hoped. Maybe it was providence that brought Yang, May and I together. Maybe it was Carl Jung’s theory of synchronicity or meaningful coincidence. I don’t know. I only know that for me, this continuing journey has become one of the most important, most valuable of my life. This opportunity that has allowed me to be part of a creative solution and concrete change. Together, the three of us get to reach others and express ideas that have long been buried under the false notion that caregivers and by proxy, those within our care are unworthy of being heard.
All I have ever wanted out of my life is to leave an impact that makes this world a little better than it was before I entered it. I get to be a part of this amazing adventure with Yang and May and with all of you, our readers. What could be better than that? Add to that a blossoming relationship with a long lost love, the opportunity to help a new group of young women new to recovery, and public speaking in New Orleans, and suddenly my life is unrecognizable.
Everything is amazing but with that comes the fear and self-doubt that always accompanies the unfamiliar for me. That’s okay too. It is in such moments that true growth occurs. While part of me wishes I could feel nothing but the good stuff, I know that there is no honesty in that.
Today, I am willing to feel and face my fears in order to embrace life’s potential and grow from the authenticity of those feelings. I don’t know how to live my life right now. EVERYTHING is unfamiliar and that is amazing and knowing that is enough.