Category Archives: resident’s perspective

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. 

Break Interrupted

Sunflower  May

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

“I need a break!”
With these words, I sweep into the room, startling the occupants.
“So,” says Mrs. R, “go to your break room.”
“Can’t, they’ve already looked in there for me,” I sigh as I drop down on Mrs. R’s bed…it’s the one farthest from the door and it’s the empty one. For good measure, I pull the privacy curtain down to the foot of the bed and arrange my legs so that you can’t see tell-tale nursing shoes from the door. I don’t dare close the door: I wouldn’t be able to listen for call-lights and nothing screams “CNA in here!” louder than a closed door.
Mrs. E, the resident in the first bed, rolls back over and goes back to sleep. She’s always resting her eyes; meal times are her favorite nap times of all. Mrs. R, sitting up in her wheelchair, turns away from the window to look at me…apparently, I’m more interesting than the birds outside. “What do you mean, they looked in the break room for you?” she asks. “It is the law that you have two ten-minute breaks and, knowing you, you probably haven’t taken them already. Tell them to go away.”
I just stare at her. “How do you know that?”
“I listen,” she replies, a bit smugly. “You would have to be completely deaf not to learn every detail of the working conditions here. Someone is always complaining.”
“Um…sorry. I try not to complain in front of you guys––”
“Quit changing the subject. Why don’t you just tell them to go away and leave you alone on your break?”
“Because then they just say ‘Oh, when you’re done’. It’s not one of those things worth kicking up a fuss over. I’m sure if I went and complained to the DON, there’d be an in-service for everyone to sign…and nothing would change. Everyone would continue to interrupt my breaks for the stupidest crap.”
I sound bitter, I realize. The thing is, being fetched out of the break room during one of my few breathers never fails to irritate me. I only take my ten minute breaks when I’m about to snap, but today there is no escaping the madness. The straw that broke the camel’s back was when my nurse stormed into the break room right after I’d gone in, to tell me to get back out on the hall because “there are too many call lights for one person to keep up with”. I think she meant “one CNA” because she has said before that she is “above aide work” and I’ve never once seen her answer a call light.
The next chance I had to take a breather, I decided the break room was not a safe place to take it––so here I am, seeking refuge from the demands of my residents in the company of my residents. Funny how things work, sometimes.

Mrs. R looks at me steadily for a minute while I swing my feet. “That nurse today is lazy,” she declares. “Next time, tell the person interrupting your break to go to hell.”
“Mrs. R!”
“Or, better still, tell them to take care of the crap themselves.”
“Do you really want the nurse you call ‘lazy-ass’ to be the one taking you to the bathroom?” I grin.
“Yes. Then I could fart in her face.”
It’s a good three minutes before I catch my breath enough to answer. Mrs. E grumbles about the noise and tries to burrow deeper into the covers.
“Oh, Mrs. R, never change,” I tell her, still giggling.
“I’m sure I’ll change a bit when I die,” she says. “Can you cuss in Heaven?”
I shrug. “I don’t know, Mrs. R. But I’ve got to get back work now. Thank you for the refreshing break!”
“No, you don’t,” she replies. “You have four more minutes. Sit your ass back down and tell me about what’s going on in your life. Then, you can take me to the toilet. I promise not to fart in your face.”

Respect Your Elders

Sunflower May

At times, it’s really hard to be professional. No, strike that––sometimes it’s really hard to be nice. This is one of those times I really wish I could just open my mouth and…well.
Breathe. Breathe and move on. Do not respond. Do not reply. This is neither the place nor the time for such a discussion. You aren’t calm enough not to scream, so don’t say anything. Prove him wrong with your actions. I keep thinking these words until I wonder if they’ve been seared onto the inside of my eyelids from the sheer force of repetition. It’s hard because I have to be professional and they can be whatever they want to, even if that’s unkind.

All this started because Mrs. L’s husband had come over for a visit. And he is a man with Opinions. He’s not one to keep them to himself either…and I could perhaps forgive him his outspokenness if I wasn’t the target of his outrage. Or I should say, one of the targets. Today, Mr. L has Opinions about Millennials.
“Man, kid these days,” he rants to his wife, ignoring me as I labor to make her bed behind him. “What idiots. When we were kids, man, I tell you, nobody was so selfish. They just want everything handed to them. Afraid of hard work, that’s what they are.”
I’m putting the pillowcase on as he says these words and I am so tempted to…no. Absolutely not, May, that is utterly unacceptable behavior. You are not allowed to even think that. Never mind that I’ve been hard at work for five hours already today, with seven more to go. Never mind that I’m in overtime for the umpteenth week in a row. Never mind that I haven’t had a break or a breather since I clocked in. Never mind…
“What is this world coming to?” he muses. “These kids are crazy and they don’t know nothing. Everything wrong in this world is because of them, I think. When we were young, we were taught to respect our elders, but I wouldn’t trust a dog with these so-called Millennials. What a disgrace––”
I can’t take this anymore. I dart around Mr. and Mrs. L, leaving the bed half-made and escape into the hallway.
No, he didn’t trust a dog to a Millennial. It was his wife he entrusted to my care. Many of the CNAs and nurses I work with are among the Millennial generation and we are the front-line of Long-Term Care. We make up a large percentage direct care workers.
I lean back against the wall, fighting tears. They’re tears of rage, but I really can’t afford to shed them right now. I am the caregiver and this isn’t the time to be emotional.

One day, I might have Mr. L or someone like him as my resident. His dignity will be left in my care, to either affirm and defend, or ignore and abuse. I wonder if he realizes that, as he rants and raves about the sins of my generation.
When you are weak and helpless, crippled and confused, I will be there, I think. And when you are my resident, then maybe you will see. Maybe you won’t…but either way,
I will take damn good care of you, whether you want me to or not. I will be your advocate and I will be your caregiver. I will fight as hard for your dignity as I fight for the gentleman down the hall, who I absolutely adore. You cannot change my compassion and you cannot change my professionalism.

I am a caregiver. I am a Millennial. And I think I am calm enough to go back into that room to finish making the bed.
When I do, it’s to see the strangest scene. Mr and Mrs L are glaring at each other; he looks surprised and she looks angry. They break it off when they realize I’m back.
“Oh, hello, sweetie,” Mrs. L says to me. “Do you know, you are my favorite aide. I don’t know how you do all the work you do. Especially,” she adds with a pointed look at her husband, “since you’re so young.”

One Voice, One Vote: Why Bother?

Sunflower May

I hate election time. I’ve come to absolutely despise all the political ads, all the fear-based rhetoric and emotional responses that seem to wash away all traces of common sense from both sides of the political spectrum. Working in a nursing home, it’s hard to get away from the political reality: TVs blare from every room and, supported as the Long-Term Care system is by the political one, it’s hard to forget that election season and its results could/will have a direct impact on my work environment.
I just can’t get away from this election, not even while I am passing out lunch trays to my folks. As I enter Mr. U’s room, the first thing I see is his TV on, set on a news channel where they are, once again, talking about the election. And in the room itself, fat stacks of political ads litter the bedside table, leaving nowhere to set his tray. As I sift through faces and promises, trying to make enough room for his lunch, I have to wonder: how did my residents get on all these mailing lists?
I’m so sick of this election and I can hear that frustration seeping into my voice as I announce the presence of food to Mr. U.
“Thanks,” he replies, never moving his gaze from the TV. “Hey, little girl, are you voting on Election Day?”
I nod. Politics is always a dangerous subject, but this isn’t exactly politics, I guess.
He frowns and shifts around slightly in his wheelchair. “Are you going to vote?” he repeats, a bit louder this time, every word slow and distinct…for all the wold as I am the one with hearing loss. Apparently, he wants a real answer: the kind spoken out loud. Suddenly I am reminded of all our previous conversations, conversations that reveal his still-fierce passion for social justice. His face is lined, his skin wrinkled and his body weak…but his eyes still shine brightly, all the more intense for the rest that has been forced upon him.
“Yes,” I say. “As much as I grumble, I’m not sure it would be…appropriate for me to pass. I mean, there have been too many people who have fought, died and sacrificed for my freedom for me to just sit on my ass at home.”
“That’s right,” he says approvingly. “Ignore the noise, forget all these negative ads and remember: what is your right will always be your responsibility. I’m gonna kick your butt if I find out you didn’t vote, little girl!”

∞oOo∞

As a CNA, I often feel powerless. I am at the bottom of the food chain: in a position to see many wrongs, but not in a position that makes it easy to correct those wrongs. There’s only so much I can do, and what is within my power often seems so small: nothing more than a trickle of water seeping between the stones of a dam. Why bother? Why keep speaking out, why keep writing and trying, breaking my heart as often as not? I am only one CNA, one American with one voice and one vote. What difference can I possibly make? How can my voice and my vote make any difference whatsoever?

The worst part about the systems and mindsets that make us feel powerless: they make us forget what little power we have. When we listen to the voices that whisper “Why bother?”, when we throw up our hands and walk away with our words all left unspoken, it is not one voice and one vote that has been silenced. It is nothing less than a victory for the systems and persons who would indeed make us powerless. Feeling powerless is the first step to actually becoming powerless. Perhaps it is not so much, this freedom of speech and this freedom to vote. Perhaps I am not so very important, but I am one of many.

Silence spreads like wildfire…but so does liberty. I am an American…I have the freedom to vote, to have my voice heard in the election of my leaders. No matter who is elected, I am not powerless. I will not be silenced or shackled, either because I am a woman or because I am “just” a CNA. My voice has weight and my opinion has value no matter my socioeconomic standing. I urge you, my fellow CNAs…do not be silent. Do not forget the power that has been bought for us by the sacrifices of those who have come before, and the sacrifices we ourselves have made. Always remember: what is our right is also our responsibility. We are not powerless and we will not be made to feel so anymore.
Go out and vote. Make your voice heard. Do not be swayed by fear or fancy rhetoric. Do your research and make up your own mind about which candidates you wish to be your leaders. And never, ever forget: no matter who wins this election, it does not absolve us of our responsibility to keep speaking out for those who cannot. What is our right will always be our responsibility…what wrongs we see, we must work to right. Vote for peace and prosperity, for compassion and communication, for empathy and intelligence. Vote for the whichever candidate you feel will be more willing to embrace the qualities we have learned to value most as caregivers of the elderly and disabled.

Do not surrender your ability to think for yourself to the politicians. Our freedom to vote is our birthright, so let it be your reason and not your fear that cast the ballot. Freedom…it’s far too precious to waste on an opinion that someone told you was the right thing.

Life is better when it has a purpose

Sunflower May

“I wish I could die.”
“Don’t say that!” These words are a knee-jerk reaction, an involuntary verbal response to the five words I dread most as a CNA.
“But it’s the truth,” Mrs. T replies. “I hate this…this shadow of a life that I am reduced to now. I hate being utterly useless, a drain on society and a burden for my family.”
“You aren’t useless,” I say, a bit savagely. I defend my residents’ humanity to the rest of the world, must I defend it to my residents themselves? “Really, you aren’t useless. Nobody is useless, not even people who are truly helpless…which you aren’t quite, my dear.”
But apparently, my words do not comfort Mrs. T. “Of course you don’t understand,” she sighs. “You’re young. You may have known doubt, uncertainty about what to do with your life…but feeling useless, having to sit in a wheelchair while you remember everything you used to with your time and talents…you don’t know what that feels like. I hope you never feel like you’ve outlived everything good about your life.”
I can’t help but remember all the times us CNAs have debated quality of life, wondering if our residents are truly happy with the little scraps of humanity we’re able to keep for them.
“I wish I lived in a state that has right to die laws,” Mrs T continues. “Oh, don’t screw up your face like that, little girl: I have the right to wish myself free from pain. I’m never getting better, so that means wishing myself dead! And if you really cared about me, you wouldn’t want me to have to linger like this, useless and in pain. Life is better when it has a purpose and I don’t have one anymore. You don’t know how much that hurts…even worse than the physical pain.”
That’s going to far for me: I would never dare tell somebody how they should feel, but I expect the favor to be returned. “What kind of caregiver would I be if I wished you gone? If I didn’t believe that your life right now has value? And you’re not useless: you make me smile. I love coming in your room and never knowing what the heck is gonna come out your mouth!” This current conversation being the exception, perhaps…
Mrs. T smiles a bit herself at that, a weak and rather watery smile, but the best one I’ve seen on her all day. “I’m sorry, but after a lifetime of doing real, tangible good for my community…making one person smile seems like such a small thing.”
“Excuse me,” I say frostily, “but my happiness is a huge thing…to me.”
That startles a laugh out of her. We laugh together, and if a few of the tears rolling down our checks are born of something besides mirth…well, who can blame us? I hate these conversations: there’s no right thing to say. If I agree with her, I’m saying that I think the world is better off without her—something I most vehemently do not believe.
If I disagree, I’m denying her the validity of her feelings of pain and grief for the life she can no longer live. And I’d be lying if I said that the thought of me being in her position doesn’t fill me with dread.
“Look,” I say eventually, “I can’t—I can’t pray for you to die. I just can’t. But I can…I can pray for you to find peace, in whatever form takes.”
“That’s a good prayer,” Mrs. T murmurs. “And, since I’m stuck here as our state does not have right-to-die laws…if my new purpose in life is to enrich your life, honey, you’d better make damn sure your life is good one. You make something of yourself, little girl, for my sake. Deal?”
Since becoming a CNA, my feelings about quality of life and the right to die have morphed dramatically. On the one hand, I’ve seen the beauty of life shining through the most debilitating circumstances. I’ve seen human dignity when society saw only brokenness.
On the other, I’ve seen pain needlessly prolonged because the family could not bring themselves to let go, long after the resident was ready to go. I’ve seen unbearable suffering dragged out, a natural death that stretched on for days and weeks. When the end finally came, there was no grief, only relief that the pain was over for everyone.

I suppose I wish for peace for all my residents, peace in their last years and in their final breaths. Peace, as I’ve learned, is not always the complete absence of pain, but at least I wish for my residents to meet their ends without agony or anguish.
Whatever else I may believe, that, as Mrs. T said, is a good prayer.

 

The Savvy Resident’s Guide

DSC00999

 

Yang

Empathy is at the heart of caregiving. While the ability to understand and share the feelings of others has an intuitive element, a natural byproduct of genuine compassion, this awareness can be developed and enhanced through thought and imagination. Simply put, we can use what we know about another person to put ourselves in their shoes.

As I read through Dr. Eleanor Feldman Barbera’s nursing home primer, The Savvy Resident’s Guide, I found myself doing exactly that: imagining what it would be like to be an elder about to enter a nursing home. The book, subtitled Everything You Want to Know About Your Nursing Home Stay, But Were Afraid to Ask touches on all the basic topics, including what to expect when you first arrive, working with staff, managing medications, your relationship with medical and social work staff, dietary issues, rehab, activities, money issues and lodging complaints.

Throughout the book, “Dr. El” offers practical advice on everything from the best way to request assistance from care staff to techniques that help you stay motivated during rehab sessions to the best way to talk to your doctor. Dr. El keeps the tone light, often illustrating her points with personal interactions from her own experience. A common theme running through each chapter is that as a resident you are not powerless and that, in fact, there is a great deal that you can do to improve the quality of your experience in a nursing home. The book is an easy read, literally an easy read, with its large print format.

There is very little in The Savvy Resident’s Guide that could be considered new information for experienced caregivers. But in a way, for us at least, that’s the point. These issues are so woven into the fabric of our work experience that they become second nature to us and sometimes we lose sight of the fact that what might be obvious to us might not be as clear to someone else. A guide such as this, geared for new residents and their families, can help us become more aware of the basic kinds of information new residents need to help them cope with what can often be an overwhelming psychological adjustment.

In another way, as Dr. El invites us to in the foreword, the book helps us step into the new resident’s shoes because it reminds us of when we as caregivers were new to the system. The whirl of faces and personalities, the jargon, the strange cultural norms and customs of the facility and care unit, were all things we had to adjust to. Now, with a little imagination, we can put ourselves in the place someone who might not be feeling well to start, who perhaps has gone through a sustain period of loss and now has to adjust to this strange new world. Our empathy can begin even before the resident enters the front door.

Dr. Eleanor Feldman Barbera is an accomplished speaker and consultant with 20 years’ experience as psychologist in long-term care. Her blog, My Better Nursing Home can be read here. Dr. El is also a regular contributor to McKnight’s LTC News. The Savvy Resident’s Guide is available on Amazon as a paperback or as Kindle book here.

The Things They Never Tell You

Sunflower  May

Here’s something that’s not quite––or not at all––a newsflash: human beings are sexual creatures.
Here’s something that’s (an often quite hilarious) newsflash: old people are still sexual creatures.
They still notice and remark on certain aspects of life that maybe we young folk would prefer they do not. Occasionally, we young folk are the ones they are noticing and remarking about.

At times this attention is sweet, like the nine marriage proposals I’ve received in the course of my career–only three of which were delivered in a location other than the shower room.
Or the time I went to wake up a resident and was subjected to a long, loud verbal tirade about how I was thoroughly unpleasant person and he was his own boss. This tirade derailed the instant he opened his eyes…prompting him to interrupt himself with “My God, you’re beautiful!” From that moment on, he treated every word out of my mouth like Gospel truth, to be obeyed immediately. I admit it: I quite enjoyed being treated like the Queen of the Universe. Being told that I was beautiful enough to derail a full-fledged, would-make-a-toddler-jealous temper tantrum didn’t hurt my confidence any either.
Then there was the time that I noticed a resident’s pant leg needed adjusting. When I bent over in front of her to fix it, I ended up getting a reminder that not everybody born before the 1960’s necessarily conforms to the Norman Rockwell image of heterosexuality. I will say that of all the passes ever made at me, hers was tasteful–far more in the nature of a compliment on my, er, physique than objectifying my body for her viewing pleasure. That woman had game.

∞oOo∞

And then, of course, there’s the far less enjoyable kind of attention. This comes in many forms, from overhearing a group of male residents ranking the female employees by sexiness, to outright asking me to climb into bed with them. You’ve got the “handsy” old men, the incessant dirty jokes, the lewd comments, the creepy stares…and the list goes on. I’m sure every aide out there has had an experience of some kind or another of this nature.
There was a time when I cleaning up an extra large BM that was, in spite of my best efforts, just getting anywhere. I became distracted from the mess when I felt the resident’s hand on my leg, slowly creeping further up. When I told him to remove his hand, he just looked at me, smiled and said: “What, don’t you like it?”
“Are you going to take your hands off me?” I asked him calmly. “Or do I have to use my hands to get yours  off me?” To illustrate my point, I held up my gloved hand…which just happened to be dripping BM. To anyone who says that there’s nothing like cold water to curb a libido, I can only guess that you’ve tried using BM. I’ve never seen anyone back off quite so fast as he did, or stay backed off for quite as long. I hardly needed to report the incident to my supervisor, whose first comment was that I “had managed the situation rather handily“.

Of course, it’s not just the residents who put on such displays of sexism and lechery. I learned very quickly to wary of certain visitors. I’ve had a visitor try to get me in trouble with my boss because I told him to keep his hands to himself. He was always trying to touch the female aides, especially trying to put his hand on a shoulder or upper arm and “steer” us around by squeezing. I objected to being touched so frequently and familiarly without my consent, especially after I politely asked him to stop. Unfortunately for me, he was one of those men who have trouble to concept of “No Means No” and began complaining to my supervisors that I was “rude”, “mean” and “hateful”.
Unfortunately for him, I’m fairly eloquent with written words and not afraid to defend myself.

Nor should you come to the conclusion that it’s only the men who make unwanted sexual advances upon staff. While I have noticed that some of the female residents do as well, they are far fewer…in no small part, I think, to the cultural conditioning that encouraged men to be aggressive and women to be passive. Also, there’s the same mentality at work that leads some of our residents to treat their caregivers as “the help”, instead of a skilled worker. When you’re perceived as standing a rung below them on the social ladder, many people feel as though they’ve been given a pass to act as they want to, without regard to your feelings.
But it exists still, with or without the spotlight. All the crap women have deal with in our still amazingly sexist culture, with a side of proximity. There is, shall we say, an intimacy of the caregiver-resident relationship that often exasperates the “normal” harassment. Personal space boundaries are in a constant state of flux in Long-Term Care. You’re often operating in what Edward T. Hall, the cultural anthropologist who pioneered the field of proxemics, called “intimate distance” (6-18 inches between you and the other person). This close proximity influences the dynamics between you and the resident, especially if that resident has dementia. They either react with hostility, “What is this stranger doing in my personal space?” or an assumption of familiarity, “She’s right next to me, so we must be close.” Or “She’s leaning over me, so she must be open to my attentions”. Inhibitions are lowered or forgotten, causing many people with dementia to act without the social filter. Is it any wonder then, when they make a move and react with confusion when they are shut down?
Of course, empathy in this situation is a tricky thing. No matter how well you’ve managed to put yourself in the resident’s shoes, how much you understand the factors that lead them to act as they do––you cannot deny the validity of your emotions. Sexual harassment is a demeaning experience, even if the perpetrator is your resident. We can’t just shrug it off and say, “Oh, well, it’s not worth the fuss,”. If we aren’t taught–or don’t learn–how to shut down such advances with compassion and firmness, we only encourage more of the same behavior, making life harder for ourselves and all our residents.

Either way, it’s one of the things they never tell you about. It’s one of the areas that we are, for the most part, told to report to our supervisors and then left to figure out on our own. How do you deal with the handsy residents, the lewd comments and other objectifying behaviors without demeaning the resident who is exhibiting the behavior? It’s one of those ethical obstacle-courses we deal with every day.

A Personal Question

Sunflower May

One of the recurring questions I heard at the Pioneer Network Conference earlier this year concerned how CNAs and other direct care workers refer to their residents/patients/clients.
I heard a variety of opinions, ranging from “Absolutely no pet names ever, it’s undignified and disrespectful” to “What does it matter?”
I don’t remember which individual it was who finally put forth the question: “Well, what does the resident think about this? Does the resident mind aides using terms of endearment?”
When I was asked for my opinion, I just shrugged and said: “I guess it depends.”

Having worked for years in Long-Term Care, this wasn’t the first time I’ve run into this issue and I doubt it will be the last. It’s one of those loaded topic, where everyone involved has surprisingly strong opinions. I think people lay bits of themselves on the line with this question…maybe it’s one of those questions that you can’t ask without thinking: “What do I want? What are my wishes and will they be respected if I can’t enforce them?”
My answer to the question is quite often met with confusion and occasionally disdain, but the truth is, I really do think it simply depends. You can’t answer this question with an absolute…it’s not that kind of question.

Some people like being called “buddy”, or “honey”, “sugar” or some other term of endearment. Some do not. Some go off the wall if person A calls them “sweetie”, but smile happily when person B calls them the same thing. (That’s me, by the way, squarely in category 3.) Residents are much the same way…being, you know, people. Individual human beings with unique preferences.

Here’s another big shocker: CNAs are also numbered among humanity. We’re people too. We each bring a different set of life experience and habits to the job. Some aides use pet names, some don’t. In my experience, good aides fall on both sides of the line. There doesn’t seem to be a one-to-one correlation.
As for me, it just slips out. It’s slightly odd, but I slip into a more Southern accent while at work (a benefit of living in multiple places is having multiple accents to switch between). “Honey”, “buddy” and “sweetie” just slide out with the Southern twang and none of my residents seem to mind…I’ve actually had residents complain if I call them only by their given names, with no endearments to follow. In front of State, no less.

Of course, I have to tailor my habits to my residents preferences. I’ve had residents ask me not to call them “honey” or “buddy” or “sweetie”––these residents are few and far between, but I’ve had them. Some prefer terms of endearment in private, one-on-one interactions and more formal modes of address in public settings like the dining room. I do my best to accommodate their wishes and preferences.
In fact, one of the very first things I’ll do when I have a new resident is to introduce myself and ask what they want me to call them. Do they want to be Mrs. P, or Mrs. Betty or just Betty? Then I play it by ear: after the initial unease, how formal is this resident in their interactions with others, with me? Do they respond better to jokes or serious discussion? How much humor on my part is tolerated? What do they call me?

In the end, this question of terms of endearment is one that I do not believe can be answered in a blanket policy. It’s a personal question needing a personal answer…and no one can supply except the resident. Even when the resident is so out of their head with dementia that they cannot remember the year or recognize their children, still they have the right to decide for themselves what they prefer. They may not be able to answer in words, but they always answer.
You just need to train yourself to hear the unspoken words hanging in the air. Don’t assume you know what another person wants. Listen before you speak for them.

A Matter of Death and Life

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Yang

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.

Bad Boss Part 1: “Work Harder”

Sunflower

May

Note: This, like most of my posts, does not tell the story of recent events. I try to chose stories that are a few months (or years) old, although I am usually inspired by recent events or conversations which remind me of the story in question. 

All I get is a whispered warning in the hall: “Watch out for so-and-so [a person of unspecified authority in the nursing home who shall henceforth be called VIP]. She’s on a bit of a power-trip today.”
“Great,” I sigh back. This bit of information has two possible meanings:

  1. The other aide is having a Bad Day, very possibly got talked to about some deficit of care and now thinks everyone’s out to get her or
  2. VIP is actually on a power-trip and I’m going to have to try to be invisible as in addition to being everywhere at once.

We’re already working short today, and seeing as how the next shift is also short, there’s a good possibility I’m going to either be asked or ordered to work a double shift. Again. I really don’t have the energy for any more drama, I really, really don’t.
“May!”
I swing around, startled and resist the impulse to shout: “Speak of the devil!” However applicable the phrase, I fear the wording would not go down well.
“I need to see you,” VIP says. She’s dressed to the nines today, I notice and mentally calculate the cost of her outfit and accessories to be roughly a month’s worth of my wages. With, you know, the usual amount of overtime thrown in.
“Okay,” I say, bracing myself for anything.
“May, I don’t want to hear anyone saying that we are ‘short-staffed’ today or any iteration of it,” she says. “We are not. We are still within acceptable and legal ratios.” Well, technically, in our state there’s no safe staffing requirements for direct care workers/CNAs…that might very well be legal, but it’s no help on the floor…no requirements that I can find, any way. She might as well say “It’s after breakfast” when asked for the time; it’s perfectly true and very little help in figuring out if you’ve missed your favorite show. “If I hear anyone saying ‘we are short today’, or any iteration thereof, or even a mention of how difficult it is today, I will be writing up that person. Understood?”
“What am I supposed to tell my residents when they ask why I’m taking so long to get to them?”
“You’re just going to have to do your best and not let them even notice,” she says. “We do not need to be adding to their burdens because you have a few extra people today. They shouldn’t even notice a difference, it’s only four people more per group. Understood?”
I nod. Well, I’ve only been forbidden to say a few phrases: how rough can it be?

As it turns out, the only thing worse than working short of staff is being forbidden to mention this factoid.
“May, I put on my call light half an hour ago, where have you been?”
“May, this person is soaked. Why haven’t you changed him?”
“May, why isn’t this person up for the meal? What do you mean, there’s nobody available to help you with the hoyer?”
“May, why can’t you help me right now?”
“Where the hell have you been, you lazy bitch? I’ve been waiting for my shower for an hour!”
It’s chaos. I rush through my shift, begging for understanding from my folks and unable to explain why it is taking me so long to get to them. Words have always been my best weapon and I suddenly feel shackled, having been forbidden to use my words to coax or cajole patience and empathy from my folks. And I really don’t think just coming out and saying “we’re short today” would be a great shock to the increasingly frustrated and soiled residents. They’re not stupid and (for the most part) they can still count. They can see how quickly I’m running between rooms, that I haven’t stopped for a break yet, that nobody has shown up to help me. Oh, trust me, they know and my refusal to admit the truth is making some of them angry.
They aren’t the only ones. I’ve always been emotional and today has strained my control. I’m running myself ragged, haven’t had a chance to stop and breathe and for my efforts I’ve been screamed at, insulted, cussed out all day. I can’t even blame them, sitting in soiled clothes for almost an hour while I try to take care of everyone who has put on their light first. In a rather disturbing turn of events, I’m apparently having the walking-talking kind of melt-down…perhaps because I don’t have time for the actual sit-down variety. That is to say, tears are leaking from my eyes, but I haven’t stopped working and, rather bewilderingly, I’m still speaking in a semi-normal voice. I’m rushing around, doing my work in fast-forward and all the while, my sweat and tears are mixing on my cheeks. This day can’t get much worse.
I really should know better by now.

I round the corner and VIP is waiting for me. “May,” she says without preamble, “what’s going on? Why is it such chaos today?”
“…” I stammer. What can I possibly say in explanation that won’t get me written up? “I can’t keep up when it’s just me on the hall, okay? There’s just too many of them and I can’t do everything at once. Which is when they want it.”
Her eyes flash…but I never actually used the words “We’re short-staffed today.” This feels so unfair. How can I explain myself after she tied up my words and laid threats against my job?
“May, these residents deserve to have a good day without having to deal with all of our troubles. They’ve earned your best, even under challenging circumstances, so calm down, put on your big girl boots, dig a little deeper and work harder.”
Work harder? What the freaking hell does she think I’ve been doing all this time, sitting on the bathroom floor and crying my heart out? I wish! Oh, how I wish. I’m about to say something that will get me written up for sure, when a call light goes off in the room behind me. Seizing upon this gift from the heavens, I blurt out “Excuse me,” and dart in the room before VIP can say anything else. The resident in the bed looks extremely grumpy.
“May, I asked to get up an hour ago.”
“I’m sorry,” I start to say, but she doesn’t let me finish.
“May,” she says in a very different tone, “are you okay? What’s wrong? Are there not enough of you girls to take care of us today?”
“I’m running behind, but I’ll be okay,” I reply, conscious of VIP on the other side of the door. It’d be just my luck today if she had her ear pressed against the door! My resident doesn’t look like she believes me. I can’t say I blame her: faced with the evidence in the mirror over her sink, I don’t believe myself.
“You’re not okay,” she says firmly, but kindly. “You need to take a break.”
“Don’t have time.”
“Did I ask for your opinion? Did I call for a vote? Now sit down and take a minute to pull yourself together. If anyone asks, we’ll say I had to shit really bad.” That sliver of concern, of human compassion breaks the last of my control and I start to sob in earnest, out loud and quite noisily. I sink down to the floor, half-hidden by her bed, bury my face in my arms and proceed to rage and storm at the injustice of it all.
Who the hell does she think…no, that’s not it. VIP isn’t wrong in what she said. She’s actually got a good point about what my folks deserve…but under these “challenging circumstances” I don’t know how to give them what they deserve. Does she think I want my folks to soil themselves? Does she think I like having my residents sit in their own urine for hours? Does she think I’m not trying my damnedest to push through these challenging circumstances?
She isn’t wrong. She’s got a good point…and yet, it’s hard to hear the words “Work harder” from someone who is calm and collected while I’m weeping silently and uncontrollably. It’s hard to accept criticism from someone who is wearing roughly a month’s worth of my wages on her person, when I’m decidedly not looking my best. I looked at her, then I looked at myself and all I saw were the differences that divided. And I hate that. I hate thinking in binary terms, us and them, the powerful and the powerless. I hate looking at her and seeing only the wealth she’s wearing, the power she holds over me. It shouldn’t be like this. We’re both persons. Everything I believe in says we are equals…but I’m so stressed I can’t even hear my own beliefs in my own head. I hate that the only words reverberating in my mind are those that scream: “She’s on a power-trip and I’m the pavement she’s pounding.” It comes down to trust and right now, I don’t trust VIP to have my back.
Okay, calm down. Breathe in, breathe out. I’m not thinking straight and it’s likely I’m misconstruing her motives or projecting my turmoil onto her. I can’t do that. She’s got a good point, the residents shouldn’t have to bear our burdens…it’s just her approach to the problem was a bit half-baked and she didn’t consider how an overwrought CNA might take her words or choice of expensive accessories.
Calm down. Pull yourself together, if not for her than for your residents.
Because if there’s one thing in this whole mess that I have reason to be upset over, it’s that between a staff member with [unspecified] authority and a resident, it shouldn’t have been the resident who made the sacrifice to give me the time I needed to pull myself together.
When my ten minutes of rage and tears are over, I rise and splash cold water on my face. My resident still looks concerned, but she allows me to get her up and together we leave the room. Back into the chaos, but this time, I am master of myself.

<oOo>

I have been blessed: while I have had experiences with bad bosses (as detailed above), I’ve also had good bosses and, more frequently, decent bosses who were neither great nor terrible. It’s not all horror stories. It’s even mostly horror stories.

But what makes a bad boss? What combination of stresses and personal flaws combine to make a nightmare experience for those who work under these people? Sometimes it’s hard to remember, especially in the moment, that a bad boss is still just a person and not evil incarnate…a flawed human being, same as yourself. It just so happens that their flaws have the power to make your life a living hell while you labor under their authority.