Lost in Translation


Alice

“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.

The Reason for Silence

  May

Sorry for the silence lately! The lack of posts from me will, hopefully, be made up for next week when we will have something special for you.

CNA Edge: Contemplations from the Second Year––coming soon!

The Caregiver Shortage and Immigration

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?

 

The Language of Caregiving


Alice
Ah the tricks of the trade. The little tips that I have picked up over the years in this field have made such a big difference. I can change a brief without taking off a client’s pants in no time flat; up through one pants leg, down and around the shoe and back up again. Whether it is selling the idea of a shower to a resistant client, coaxing and encouraging a resident to eat, or redirecting a person living with Alzheimer’s, somewhere along the way these little tasks have become muscle memory, as familiar and comfortable as my favorite well worn scrub top. I was reflecting on that recently, how what was once so foreign has become second nature to me and I realized that what I did was learn a language. There may be any number of dialects, but in the end it is in one tongue.
My ultimate goal, regardless of where I may work, is to meet the needs and improve the quality of life for those in my care. That is the overarching ideal for which we caregivers strive. It’s one simple concept but it is very individualized and it’s success is based on knowing our residents and growing our understanding of what makes them tick. It is the language of empathy.
My client was having a rough day. She slept well and all her pain pills from the night before are still there, so I know her pain level was not the trouble. Her blood sugar was normal. Still, her appetite was down, and she wasn’t interested in going out. She wasn’t engaged. After a year of working with her, I knew that she would open up if I could just make her laugh. She has a fantastic sense of humor and that is one of the most effective tools to open the doors to communication with this particular client.
This resident feels safe on the porch. This resident prefers showers in the afternoon. This client loves enthusiasm. This client takes a while to open up because the woman who cared for her for five years moved and she is feeling uncertain. It’s the language of knowing, the language of patience and perseverance and consistency. Because I’ve had to learn these traits in order to do my job effectively, I find that I am more capable of applying them into my daily life off the clock. Because I want to maintain my ability to grow as a person and learn from my work, I have to honestly take stock of myself on a regular basis. The language of caregiving is universal, challenging and transcendental. The skills I have learned on the floor have impacted my life, relationships with others, and perspective deeply. I truly hope that never changes because I find it valuable beyond measure.

A Wide Movement

May

As I talk about CNA Edge more, there’s a question that keeps coming up: for whom am I writing? What is my target audience?

Whenever I’m asked, my initial reaction is always: “My audience is whoever reads it”.
But that’s a vague answer at best, and no answer at worst. There are some who tell me I should focus more on reaching policy-makers and people in positions of power. And I can follow their line of thinking and I agree with their points: there is a divide between direct care workers and those at the top. That divide hurts our residents, often badly. So yes, I would love to reach more policy-makers.
But not at the expense of also my reaching my fellow CNAs. To put it another way, I do not want to be the sole spokesperson for CNAs to policy-makers and administrators. 

Policies can change. Rules and regulations can be changed with administrations, and then swept away with the next changing wind of politics. I am not dismissing the importance of good policies and those who work so hard to affect change for long-term care. We need people fighting for good policies, and for responsible leadership. We also need people fighting to change the way CNAs think about themselves, to throw off the label of “nothing but an ass-wiper”. If I can do that, then I am not alone. One or even three CNAs speaking up can be ignored. We could even be silenced. How about one hundred CNAs? Or three hundred? How about a thousand, or a million?
That starts by letting CNAs everywhere know that they are not alone. Sometimes I think the worst affect of this broken system is that it makes people who work so closely with others feel utterly alone. We, who have the power to deeply impact the lives of our resident, are often made to feel helpless by all that we cannot change. We feel alone, helpless and burnt out. Silence and sullenness can and do follow.
But together and aloud…what can’t we achieve?
I do not ever want to talk over the heads of my fellow caregivers. I refuse to fall into the trap of thinking that I am somehow more than they are, or that they are something less than me. If I am intelligent, compassionate and eloquent, that does not make me unique among caregivers. Actually, I’d argue that makes me about average. If I stand out, it’s only because I speak out.

What we need now is change, both on a personal level and on a larger cultural one. Compassion, common sense, communication and critical thinking have got to be infused into this broken system. We have to have people dedicated to change on every rung of the ladder…including the one belonging to CNAs.
Just like a democracy cannot function without the active participation of ordinary citizens, neither can our long-term care system function without a principled and vocal base of direct care workers. CNAs who are willing and able to speak up for themselves and their residents.

Leave it at the Door


Alice
I was hurting. It wasn’t the only emotion I was feeling or even the strongest but it was there, nagging at me; an annoyingly persistent hangnail in my soul, taunting me in the back of my mind. The weather wasn’t helping with its clouds heavy with unspilled rain lingering above as I drove the ten miles to what promised to be a long shift full of me biting my tongue through twelve hours of political discussion.
I’m not sure why everything decided to crash in on me this morning. Sure, I have had a long tumultuous stretch in my life, but the good has far outweighed the bad and the opportunities abounded in ways that I never saw coming. Still, emotions don’t always work in logical ways and I just felt so…tired. So uncertain of everything.
Leave it at the door, Alice. It wouldn’t do to simply plaster a smile on my face, keep an upbeat tone of voice. No. What I have discovered throughout my years in this field is that what those within my care lack in physical ability they make up for in emotional awareness. This has especially been true in private care, where we spend so much time together one on one. I can’t just fake it. My client would call me on it. I took a deep breath before I unlocked the door and made a silent list of all I had in my life for which to be grateful and got to work.
I thought I was doing well. I really did. I honestly believed that I had worked my way through that vague nagging malaise that invaded my spirit this morning. Blood sugar. Morning meds. Breakfast. Wash-up. This too shall pass. This too shall pass. This too shall pass. This too shall pass. My mind unconsciously chanted as my hands moved by muscle memory.
“What’s wrong, Alice?”, the words cut through my repetitive thoughts. To my shock and horror, I felt tears well up in my eyes.
“Nothing. Everything. I can’t really tell at the moment.”, I answered honestly.
“Oh. I have days like that.”, my client replied. And suddenly I felt a little better. Suddenly I felt less alone with my troubles and I was able to regroup.
We caregivers have to compartmentalize so much. It’s just part of the gig. Our client’s and residents have so much to deal with we never want to add to their troubles by carrying our own into the work place. Leave it at the door. It’s hard for me to shut that off sometimes; that dissection of my own emotions in order to function better for those around me…that minimization of my own concerns.
It’s been a process for me to learn how and when to let down those walls and sometimes I still miss the mark. Still, today my client showed me that it was nice for her to be reminded that she wasn’t just being helped and comforted. She was able to help and comfort me as well.

Honorary Grandparents

 May

In compliance with HIPAA, all resident names and identifying details have been altered. Also, this story did not happen recently.

It’s always strange, coming back to work after extended time off. . .anything longer than a three day weekend. I always seem to think that I’ll lose some skills (or worse, speed) when I come back. I’m not sure where I acquired this idea, nor why I hold onto it.
On the one hand, nothing changes while you’re gone: there’s still too many residents and not enough aides. The work doesn’t change. On the other hand, a lot can change in almost a week. One resident can pass away, another could fall. Mr. J can change from being a standing lift to a hoyer. The residents with more advanced dementia can forget me entirely, others assume the worst from my absence.

Take Mrs. N for example. As soon as she opens her eyes and sees me standing by the foot of her bed, an expression of pure relief floods her face.
“May, you’re back! Did you decide not to abandon us after all?” she asks, grasping my hands as soon as I set her tray down at her beside table.
I’m still worn out from the week I’ve has, so I convey my confusion about her inquiry with an ineloquent but effective syllable: “Huh?”
“You left us,” she says reproachfully. “But I suppose I can forgive you as long as you don’t quit again and leave me.”
“Quit?” I repeat. This is the first I’ve heard about a change in my employment status. “Honey, I didn’t quit.”
“You were gone for so long! And you didn’t tell me goodbye, or say you wouldn’t be here for a while.”
“It wasn’t that long,” I protested.
“It was forever!” she insists, still clinging to my hand. “Well, if you didn’t quit, where did you go?”
I thought I’d be stronger…but then again, how would I know? I’ve never been in this position before. All I know is that now I’m crying again. Sometimes it feels like the tears will never stop, that the pain will never dull.
“I had to bury my grandmother,” I sob out; then Mrs. N pulls me down beside her and holds me until I stop crying.
“Sorry,” I sniffle.
She waves her hand at this, dismissing my embarrassment like so much nonsense. As she looks at me with sympathy, I can see a thought forming behind her eyes. It seems to grow until she can shape into words and says, in a soft, hesitant tone: “Can I be your grandmother now?”
And once again, I get choked up. I pride myself over my command of words, but none will come now and so I just nod my head vigorously, and grip her hands tightly.

The bonds that form between caregiver and resident are often deep. We see each other at our very best, at our worst and every mood in between; we pour so much of ourselves into each other. I am still a girl without a grandma, still hurting from that loss. But it helps, in a way I couldn’t have imagined, to have so many of my residents glad of my return, and willing to share in my grief.
I seem to have a lot of honorary grandparents.

A Call to Arms

photo
Alice

“I have to stop. This is getting ridiculous.”, I thought. It was my day off and I accidentally-on-purpose stumbled into the world of online news articles…two hours earlier. It wasn’t the articles that I found so disturbingly riveting. If I had learned anything this election cycle, it was to find and get my information from legitimate and objective sources and to stay away from opinion pieces disguised as fact. No. It wasn’t the articles. It was the comments section. I had jumped down a rabbit hole into a world in which I had no business being.
The level of hostility driven by fear took my breath away. Comment after comment of anger and name calling; fully grown adults incapable of completing a thought without using expletives, their words screaming off of my computer screen. It did not matter what side of the pointless argument they took. This was equal opportunity rage and poor behavior and it fed off itself; a snowball effect of dark emotion fueled by the safety of anonymity. It was as if no one recognized that they were talking to other human beings and it is bleeding into the world beyond the World Wide Web.
That’s when it hit me. We caregivers have a unique opportunity in this climate. I know this sounds like a stretch, but follow me here for a minute. In my capacity as a caregiver, I have had clients and residents from just about every walk of life: Rich, poor, black, white, middle eastern, Mexican, gay, straight, super religious and die hard atheists; people living with a variety of physical and mental disorders and people from all sides of the political spectrum. None of that mattered. The very nature of our work depends on seeing people beneath their disorder and knowing who they are in order to provide the best quality of care. Personal disagreements on politics or religion in no way factored in and because of this I have learned from those with whom I wouldn’t ordinarily have had the opportunity to engage and have been blessed with many close friendships that often arise from the caregiver/ client relationship. I have never, not one single time viewed a client as simply one thing. I didn’t think of them as their disorder, race, religion, politics or whether or not they were private pay. I know them by their stories, by what they share with me and their personalities. We, as caregivers, do this naturally. It becomes second nature. We remind those in our care that they are human beings, first and foremost, and deserve to be treated with dignity. Imagine if we collectively used those lessons we learned from our work on every person we meet. Imagine if we could teach those lessons to others by our actions. Wouldn’t THAT be a movement worth starting!
As a society, we have to stop allowing the worst of our anger and fear to dictate our behavior. We can not allow ourselves to pigeonhole others to the point of only seeing our differences. We have to do better than this. I think those of us in the caregiving field have a responsibility now to apply our expertise to the world at large. We have a deeper calling. Today is Martin Luther King Jr. Day so I would like to end this plea with the man who said it so much better than I ever could and who backed his words with his actions:

“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”

“Faith is taking the first step even when you don’t see the whole staircase.”

”I look to a day when people will not be judged by the color of their skin, but by the content of their character.”






Nursing-home-made

Sunflower May

In compliance with HIPAA, all resident names and identifying details have been altered or removed. 

It’s funny, how a person’s possessions can tell us so much about them. Most new residents come in with very little: just the clothes they wore in the hospital and maybe a small bag. Then, their families either start bringing in loads of stuff…or they don’t. I have seen rooms so crammed full of personal mementoes that it’s hard to care for the resident; so many clothes in the closet that the door won’t shut and every surface covered with knick-knacks.
I have also seen rooms bare weeks after the resident moved in, the only proof of occupation being the person in the bed. Only a few clothes, no knick-knacks…no decorations or pictures.

Mrs. L seems to be one of the latter category. After a week, she still only has the one bag that she had clutched so tightly on the first day, plus a couple outfits. They’re nice, but the kind of nice that has been worn for years and years. Her family comes often, but they seem more stressed each time and their visits get progressively shorter.
There’s always a learning curve, some time required to start feeling comfortable in the new environment…but Mrs. L doesn’t appear to be adjusting at all. She won’t leave the room, she hardly eats and from what I can tell, she seems to spend most of her days screaming into her phone and crying. I decide I can’t kept walking past such agony. We don’t know each other very well, but that’s about to change.
“Hey, can I sit down?” I ask, walking into her room and gesturing to the empty chair (provided by the facility) that sits by her bedside. She shrugs and I take that as permission. Good Lord, but it feels wonderful to get off my feet.
“I’m May, if I haven’t introduced myself before,” I add…although I’ve introduced every day this week. “Do you need anything?”
She shakes her head. I’m trying to decide between asking another question and telling a story about myself when she suddenly starts talking.
“You can’t help, nobody can help. Can you make me better? Can you tell the insurance company not to be assholes? Can you give my family a fortune so they won’t have to sell my house to afford ‘getting me the help I need’? Can you buy back everything of mine they had to sell, so I don’t have to look at bare walls while I wait to die?”

I can’t. I can’t wave a magic wand and sort out the economy, endow her with the money she needs to have a good life even though she is now elderly and disabled.
The only magic I have at my disposal are my imagination and my hands. I stay for a few minutes, now holding her hand as she cries yet again, then I slide off the chair and leave the room.
It only takes a few words in the right ears. When I come back, I’m not alone and we aren’t empty-handed.
We disperse over the room, laying out our various offerings. The Laundry department brought up clothes that have been donated to the nursing (usually by families of resident who have passed away in our care); Activities gave several left-over decorations from the various Arts-and-Crafts over the years. Nursing gathered personal care items from the supply room and arranged them in her drawers. Staff from every department drew pictures and scribbled down nursing-home-made Get Well cards…but the best bit came from a fellow resident. She heard of my cheering-up campaign and told me to pick out the prettiest flowers from the bouquet she got for her birthday and give them to that “poor lady”.

Small acts of kindness in Long-Term Care are not whistling in the dark. With each act of compassion, we light a candle. True, it will take a lot more candles than I can personally light to lift the shadow of greed from our broken system…but that’s the funny thing about kindness. Even when it’s not enough to turn the tide, change the culture or right the wrongs of this world––it is still appreciated and it can still mean the world to that one person.

My hope is that, one day, we will have more to give than what we can scrape up. I hope that one day, compassion will be considered along with costs, that questions of ethics will be given equal standing with questions of economics. 

The Trenches

photo
Alice
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.