Category Archives: coping

Broken System vs Personal Responsiblity

Sunflower  May

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

If there’s a story of my career in health care, it’s probably: Nothing happens the easy way, or when I have time to deal with it. Take right now, for instance.
Mr. K has a reputation for being a jokester; he loves to laugh and he loves to make others laugh. The aides are his best audience as we always appreciate a bit of levity. Unfortunately, Mr. K doesn’t so much speak as he does mumble. It’s hard to understand him…especially when he’s cracked up laughing at his own joke. I know from experience that if I keep just repeating that I can’t understand him, his joy will vanish like his independence. So, I lean down and put my face right next to his mouth, in order to catch the words of what I am assuming is a killer joke. When he repeats himself yet again, I don’t take in his words. I can’t; I’m a bit distracted.
His breath is so foul, it smells like something died in it.

I didn’t brush his teeth this morning. I haven’t brushed his teeth all week. As I gag, I ask myself “How did this happen?”

Oral care is often the last part of personal care to be done, and by the time I get to it, I’ve been in the room for fifteen minutes already and ten other call lights are going off. It seems like a quick task, so it’s easy to say “I’ll get to it in a moment,”…and then never actually find time for that moment. When you’re scrambling just to change your people, making the time to do oral care is hard. Adding another five minutes to each resident’s personal care time, when you have ten residents and you’re already running behind…yeah, that adds up quick. Sometimes it is literally a choice between brushing Mr. K’s teeth or changing Mrs. L’s brief before she soaks through her pants. In other words: when you only have ten minutes, what is the most effective way to use them? Most often, we choose the big problems to tackle, the things that have an immediate impact on our residents’ quality of life.
The other problem is that we get so used to dealing with emergencies, crunch-times and hard decisions. We get so used to cutting corners just to survive the day that we form habits around the emergencies. The little things that we had to drop during the crisis? We forget to pick them back up. We get used to not brushing teeth.

The problem of oral care is the problem of this broken system of long-term care, narrowed to razor-thin focus: too few aides taking care of too many residents. We have a system that punishes the aides who take the time to provide good care, and then punishes them again for providing mediocre care. And yet, for all that is true, Mr. K’s mouth still smells like something died in it. I am still his aide…do the flaws of the system really absolve me of my personal responsibility? Being a CNA is, in so many ways, to be forever caught in the moment of drowning: my best isn’t good enough and yet my best is always required.

I laugh, like I got the joke. “Good one, Mr. K! Tell you what, while you think of another one, I’m going to brush your teeth, ok?”

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.”

Laughing together

 

Sunflower May

In compliance with HIPAA, all names and identifying details have been altered or removed to protect patient privacy.
It’s funny that we call the oncoming shift our “relief”. Funny and yet oh-so appropriate. Right now I am so relieved that I hug the poor woman as soon as I spot her on the hall.
“Oh, crap,” she gasps. “Let me go clock out if it’s that bad!”
“Some say the world will end in fire, some say in ice,” I tell her. “Clearly, they’ve never been to a nursing home or they would know it’s going to end in shit.”
We just look at each other and burst into laughter. It’s not quiet either, a soft chuckle and back work. It’s the kind of laughter that has us both leaning against the wall for support.
Just our luck, the strictest of the management team happens to walk down just then. She raises her eyebrows at our “lounging” posture and we push off the wall so fast I get a bit dizzy.
“What has you both so tickled?” she asks drily.
I glance over to my relief for some moral support, then grudgingly repeat the joke.
Our hard-ass, straight-laced management person doesn’t laugh. She doesn’t even smile, she just says in the same dry tone: “Clearly. What did they feed these people last night?”
“Corn,” I say promptly. “I felt a bit like a gold panner today.”
“Gross!” exclaim both the other CNA and office person.
“Not as gross as what else was in there,” I counter.
Then, all three of us are laughing, leaning against the wall for support.
<oOo>

Sometimes it easy to get lost in the trenches. We line up on opposite sides, slap labels over the other’s face.
Housekeeper.
Cook.
Administrator.
Supervisor.
First shift CNA.
Second shift CNA.
Third shift CNA.
New CNA.
Student.
Resident.
“Those” residents.
Labels are nifty little things, handles by which grab on to something. The trouble comes when we forget to look beyond the handle to see what it is we’ve actually picked up.
Another human being. A person who laughs and cries, the same as us. A person who laughs at your exhausted attempt at humor.
At its best, laughter is the best medicine. Laughter can connect us, transcend the labels and jump the lines.
It’s really hard to give good care all by yourself in this system. Having allies by your side, someone to lighten the load, relieve you and sometimes just not punish you for a moment’s breather…those things really go a long way. Those things are what allow me to survive long enough to have those personal moments with my residents that renew my passion for this field.

Empathy vs Apathy

Sunflower  May

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

Can I ask you something?” a newbie CNA asks me…in that tone of voice that usually means “Trouble this way”. We’re assisting Mrs. A to eat her lunch, although “assist” doesn’t quite seem like the right word when all she can do on her own is open her mouth. 

“Um,” I say, “sure.”

“That one aide. Why is she like this? How do you get to point where you just don’t care? Why does she act like giving these people your very best is a waste of time?”

“Well,” I sigh. “There’s a lot of stress that goes with being a CNA, and a lot of the time you don’t seem to be making a difference…”

He picks up the spoon, loads it up with mashed potatoes and gently gives it to Mrs. A. “There,” he says, “I just made a hell of a lot of difference for her.”

I almost come out of my seat. “Promise me you’ll stick with this,” I say fervently. “You’re right. Every little bit we do makes the world of difference…but sometimes it’s hard to remember that when you’re frustrated, over-worked and, well, when nobody else sees the good you do. And for that one aide, well, sometimes it’s easier to shut off the part of you that can feel, to spare you from feeling despair. Some aides learn how not to care to survive this broken system ”

“You didn’t,” he says indignantly. “I won’t.”

“Remember that promise,” I say gently, “but also remember this: deciding to be a good aide is not a battle you will ever leave behind you. It’s a choice you will have to keep making every single shift, to do your best even when it seems pointless, to keep being kind even when your efforts seem as terminal as your resident.”

“Is that what makes a bad aide then?” He asks. “Deciding that your best isn’t required? Choosing apathy over empathy?”

∞oOo∞

What is the good of small acts of kindness done for a person who will shortly be dead? Isn’t it a waste of time and talent? Isn’t your struggle to be kind as terminal as the disease killing your resident? One day soon, your resident will lie cold in a bed and there will be nobody left to remember how you put off your break so you could fluff her pillow. Nobody saw you give a good bed bath to Mr. T instead of just running a wet wash cloth over him. So what’s the point of trying? Why put yourself through the agony of giving good care in a system that is not set up for small acts of compassion?

Nobody wants to admit to having these feelings. Who wants to stand up and proclaim to the world that you wonder if somebody’s grandparent was worth the effort?
So instead of acknowledging these doubts, you repress them. You decide that you’re going to be a good caregiver, not like those bad ones who seem to act only on your worst thoughts. So you take your doubts and you shove them down, bury them deep, you say that you’ll never be like those CNAs…but idealism and good intentions will only carry you so far. Eventually, you will reach the place where everything exists in extremes and to feel at all is to be in pain. In that place, it easier to just shut it off, to distance yourself from that which causes you pain.
In this case, what causes you pain is the same thing that causes you doubts.
How do you handle the stress of constantly never being good enough? When you are constantly given more work than you can do and when you see your residents suffering because of it…what can you do?
Becoming a jaded CNA is not a single decision you make; there’s no switch you flip between “good CNA” and “bad CNA”. It is instead a series of small compromises. It’s slowly learning how to shut off the connection between you and the resident, until that resident seems more like work than a person. It’s getting to the place where your worst thoughts are the only ones you can hear. That’s when you become the thing you swore to never be.
This is how you surrender your compassion…because it hurt too much to care. Empathy hurts and apathy is appealing.
So, to all new CNAs, don’t go in blind. Being a CNA is like holding your heart to a cheese-grater. To feel is to feel pain. You will doubt whether you’re actually doing any good, and any difference you make will seem to die with your resident.
When these doubts came, face them. Look them straight in the eye and do not despair.
Doubts do not define you; a feeling that came over you during the struggle does not make you a bad person. But a feeling you buried deep in the bedrock of your soul, left to fester until it poisoned all the feelings that came after it…that one might, in ways you never expected. Sometimes, they chain you in such a way that you will never get free. The only way to break the chains is to acknowledge that they are there.
Remember that empathy hurts, but apathy doesn’t…because apathy means you don’t feel anything. Not pain and not joy. You can’t have one without the other, not in life and especially not in Long-Term Care.

And most of all, do not forget the other person in the room. Never forget the silent observer to the tiny acts of compassion, to all the sacrifices and struggles to carve out room for good care.
Do not forget yourself. 

At the feet of the elders

Sunflower  May

I am upset. I am not having a good day. I can’t even remember what started it: something bad in my personal life that has snowballed, absorbing my every frustration about this broken system. There’s never a lack of frustration within Long-Term Care…which either makes it a great channel for all your passions, or the straw that breaks the camel’s back. Right now I am broken.
I’m behind, smashed straight into the grimy floor by all the work I’m expected to do. On top of that, everyone is call-light happy, wanting things done for them, needing to go to the bathroom for the seventh time this shift. I’m not able to get to the quiet ones for all the chaos and noise.
Mrs. K is the one I’m with right now. She’s a mess today, confused and not content with the answers I’m able to give her.
“Why am I here?” she asks me again. “I don’t need to pee!”
“I told you,” I say through tightly gritted teeth, “I haven’t been able to get to you all day. I need to check you before I go home.” It’s pretty obvious that I haven’t changed her all shift and that she’s going to need more than just checking.
The pants are wet. Wonderful. Just freaking great. The shoe laces have a knot and I can’t get them off. I can feel the tears welling up in my eyes and I can’t even wipe them away, not with my gloves on. Can you recall a tear through sheer force of will-power?
Nope, there it goes: straight down my cheek to splash against her leg. It’s like that tear broke the dam. Great sobs burst from me; I lay my head down on the closest thing and proceed to cry my heart out.
A soft hand runs through my hair, gently pushing it out of my face. I realize that I’m still kneeling in front of Mrs K, resting my head on her knee like a little child seeking comfort…comfort she is giving me.
“There, there,” she tells me, “you just let it out.
.

There’s many things they never tell you about Long-Term Care. They don’t tell you how painful it will be, how stress breaks your heart. But they also don’t tell you about this bit, the little shards of kindness and wisdom that can stab your soul. They don’t tell you about the renewing power of sharing grief. They don’t tell of how much wisdom you can gain by becoming so close to those who are near the end of life’s journey.
This is my peace, the balm of my soul. This is my joy and I will not let anything snatch it away, not this broken system, not fear and not burnout. She is losing her mind and I am breaking my heart…but this moment is ours. We’re here for each other.

 

The Crucible

Sunflower  May

Sometimes I swear the nursing home is secretly a crucible—with myself as the bit of iron being refined and beaten into steel. Maybe I’ll come out of this stronger, or maybe I’ll shatter under pressure. Sometimes I wonder what is being purged from my being…I know something is gone from my soul, gone or altered so fundamentally that it might as well disappeared.
What is burning in that fire? Is it only weakness, my selfishness, naïveté and arrogance or am I also losing bits of my compassion, my patience, all the soft parts of me? I feel harder, more brittle. Anger comes quickly, if I let it. I’ve seen so much ugliness, so much injustice and been dismissed so many times; I’ve learned by example how you dull the voice of your conscience. I have an edge I never had before, a sharpness where I was once fluid. I am weary in a way I wasn’t before. Sometimes it feels as though my youth has been a sacrifice. I meant to lay it on the altar for God and the ones I care for, but those ruled by greed and apathy keep trying to snatch it away for themselves. I’m tired and never far from sorrow.
Sometimes I miss the person I was before. In my years as an aide, I’ve shed so much of my innocence. Also, the time and energy I give to my work have held back my own stories. Change may come to this broken system, but not soon enough to save me from the bitter taste of burnout. Some days I can’t help but resent that. I remember one time being so frustrated and raging to my mother about the unfairness of it all; I remember she told me being a CNA had changed me, that I had both lost and gained from the experience. I asked her to give me the bad.
I never asked her how it had made me better. It wasn’t what I needed at the time: I needed to feel the cold water of my own failings…needed to remember my own flawed nature, that I wasn’t perfect or passive.
And I needed to decide for myself what I had gained.

Empathy
When there are worlds and words swirling endlessly inside your head, it’s easy to get lost inside yourself, to distance yourself from other people. I was absorbed in myself and my stories, before caregiving forced me out of my head and into the stories of others. If you can put yourself in another person’s place and feel what they are feeling, it makes care go so much better–especially if there is a barrier of communication like aphasia. I am a better storyteller now for having learned to put aside my own perspective. My stories have a depth they did not before, back when I still thought I was the center of the universe.

Faith.
I used to be so afraid of my own mortality…terrified that one day I’d be gone from this world and would have done nothing to mark my existence. I was so scared to be forgotten, until I held the hand of a dying woman and recited the Lord’s Prayer with her. She took that fear with her when she left this world. I have a confidence I didn’t have been.

Strength.

Before I was a CNA, I thought strength meant stature and a rigidity of will. I thought only the unbreakable and the bold were strong. I didn’t realize that true strength…that’s resilience, to have your heart broken and your dreams shattered and then get right back up to go again. Until I was surrounded by fellow caregivers, I did not appreciate that strength is a dance between confidence and humility: a willingness to bend when necessary and wisdom to know when to stand your ground.

Purpose.
I’m the kind of person who needs a crusade, something bigger than myself to feel satisfied with my life. I’m not content to let injustice go unchallenged or to allow the dignity of a person to be disregarded, no matter how much they “contribute” to society or how much of an “inconvenience” meeting their needs causes. Whatever other heartaches and frustrations come with it, being a caregiver has certainly given me a crusade to fill a lifetime or more.

In the end, it’s heart-breaking, life-affirming trade. Everything I am, I became…or rather I am only who I became. What I lost I surrendered, and what I gained I was given. What I have retained, that I earned.

Heroes and Role Models

DSC00999

 

 

Yang

When I was 9 years old, my heroes were Detroit Tiger greats Al Kaline and Willie Horton. Like just about every other kid in the neighborhood, I rooted and watched in adoration, wishing someday to be like them. I mimicked their behavior on the field, giving special attention to what they did while at bat. 

Every hitter in baseball performs a uniquely personal ritual before each pitch. This ritual consists of a series of specific behaviors: stepping away from the plate, adjusting themselves (sometimes in PG rated fashion), glancing toward the third base coach for signs, more often than not they spit – no one spits like big league ball players – then stepping back into the batter’s box, perhaps tapping the plate or their cleats, before going into their stance. They do the same thing, the same way, every single time. While every hitter engages in these behaviors for the same reason – to help them focus – both the specifics of the ritual and the batting stance are highly individualistic; no two hitters do it quite the same.

While I imitated their behavior on the field and developed my own set of batting rituals, I knew very little about my heroes’ personal lives and didn’t really think much about it. I was far more concerned with their batting averages then what they like off the field. Since I didn’t know what they were like as real people, they couldn’t actually teach me much about real life. They were heroes, not role models.

The real role models were the people in my immediate environment: my parents, my older siblings, my teachers at school. They were the ones who taught me how to be responsible, how to conduct myself in public, the proper way to treat other people, how to respond to adverse circumstances, how to give and how to receive. And so much more. While they used words to instruct and correct, observing their behavior was what laid the foundations for my values and attitudes as an adult. The most powerful lessons came from what they did, not what they said.

As a young adult, the notion of hero worship seemed awkward and unnecessary. I had become much too sophisticated and cynical for something so childish. But I still had role models. They came in the form of my coworkers, other caregivers whose behavior I admired based on my own values. My formal training and directives from management instructed me to treat the residents with caring and respect, but they couldn’t tell me how to do it.  It was in watching how other caregivers approached and responded to residents, the real-life interactions with all the give and take within the context of care, that provided the model and showed me how to practice genuine compassion. The lesson was in the act and how it made me feel while I observed it.

Later in life, I rediscovered the concept of heroes. However, instead of the larger than life athletes of my youth, they came in the form of everyday people whose behavior I found inspiring in some way. Like a 9 year-old rider named Nathan who I met when I began taking horseback riding lesson a few years ago. Both Nathan and I were beginners, starting at the same skill level. We didn’t end that way.

Nathan was born with a moderate form of cerebral palsy. However, through treatment, including a long series of surgeries, a lot of physical therapy and tons of family and community support, Nathan was able to ride a horse. Not only did he learn how to ride, but he started performing as an equestrian vaulter.

Equestrian vaulting is a unique sport and performance art that combines elements of dance and gymnastics on a moving horse. The horse moves at either the walk or the canter and is tethered by a lunge line operated by an instructor or coach who thus controls the horse’s movement. This leaves the rider free to focus on his or her performance.

I participated in vaulting too. But I never progressed past the walk. While the movements at the beginning level are relatively simple, the fact that the horse is moving complicated things and I couldn’t master even the basic movements at the canter. But Nathan did.

By the time I discontinued my lessons four years later, Nathan was riding at a couple levels above me. As impressive as that was, what really inspired me was the manner and attitude he brought to the sport. As a performance art, so much of equestrian vaulting is about presentation: doing something that is very difficult and making it look easy. While the movements require technical skill and considerable physical exertion, each one is capped with a moment of showmanship: the graceful wave, the smile, the playing to the audience and judges. In these moments, Nathan excelled. He was a natural, the source of his audience appeal came from within. He absolutely loved being on the horse and performing in front of those people. It wasn’t just his success in overcoming the physical obstacles that I found heroic, it was his courageous and irrepressible desire to experience and express joy in what he was doing.

More recently, my concept of heroes has blended with who I consider role models. It’s just one thing now.  I am inspired by and want to emulate anyone who, like Nathan, refuses to allow difficult circumstances to keep them from finding happiness and meaning in their engagement with the world around them.

The reality is that if you live long enough, you’re going to experience loss and change, sometimes deep loss and drastic change. We all, at any age, can experience a sense of existential dread, that underlying anxiety that the things we rely on to give us our identity can breakdown and be taken from us. For our elders in Long Term Care, that dread often is their reality. I admire and learn from those who have suffered this kind of loss, but are willing not just to continue, but have the courage to redefine what to them makes life worth living. As I enter my seventh decade on this planet, these are my heroes, these are my role models.

As caregivers, we need not be passive bystanders, silent admirers to the courage of our elders. Since we are there, with them, we have an opportunity to play a crucial role in facilitating that courage. It’s not a matter of simply telling them that life is still worth living, but to discover to the best of our ability what that means for them, one person at a time. Because that definition is as unique and individual as the batting rituals of the heroes of my youth. 

It will be okay

rose-1122893_1920

 

 

Rose 

It seems like every other word out of my mouth tonight was an apology.  “I’m sorry I forgot your towels.”  “I’m sorry I forgot your coffee.”  “I’m sorry it took me so long.”  “I’m sorry, but it looks like I won’t be able to do your shower tonight.”  After two years of this, I finally felt like I was starting to get the hang of things.  But this particular hall was so busy that some things just slipped through the cracks.

              Every time I feel like I’ve finally got things figured out, it seems like the universe drops a load of crazy in my lap.  Or in this case, a week of crazy.  They just filled this rehab unit up after having it closed for a few weeks due to low census, and it seems like they managed to find every demanding, picky, or needy person in town and drop them on us all at once.  Everyone who works this unit knows that it’s crazy.  We’re struggling to get the bare minimum done, and it’s starting to show.  We’ve been asking for more help for days, but it’s not going to happen.

              It’s been a while since I’ve had an assignment this busy, and it was a rough day.  I forgot Mr. A’s towels and Mrs. B’s coffee.  Mr. C’s wife and daughter were sitting in the hall just before dinner, watching me run my legs off and making sympathetic comments about how I needed more help.  Mrs. D waited over two hours for me to be able to put her to bed, and I never did get the chance to give Mrs. E her shower.  As I’m driving home, I find myself running through the day in my head, trying to pinpoint what I could have done better.

              I want to tell them that I’m busy.  That there are too many people.  That I need more help.  But I try to avoid excuses, because they don’t really change anything.  For better or for worse, this is what I’m stuck with, so I’ll figure it out.

              In the end, Mr. A and Mrs. B got their towels and coffee.  Mr. C’s family went home and I was finally able to take care of him without someone breathing down my neck.  Mrs. D got into bed, and I told Mrs. E that maybe she can request a shower tomorrow or the day after if the staff has time.  The orientee from the other hall came over to help me for the last hour, and I finally got everyone into bed.  The charting wasn’t finished, and I clocked out late, but that’s okay.  It happens.  I’ll get to try again next time.

              The truth of the medical field is that it’s hard.  Some days it feels like I’ve been put through the wringer and dropped on a sinking ship with a teaspoon to bail myself out.  I can either sink or learn to swim very quickly.  But in the end, it’s worth it.  Because when I walk into a room, they smile.  They ask how my weekend off was, or how my classes are going.  I celebrate with them when they graduate from the wheelchair to the walker.  I give them a hug goodnight and tell them I’ll see them tomorrow.

              They need me.  It’s terrifying to realize that these people are totally dependent on me to care for them.  It’s a million times more terrifying for them.  There will be good days and bad days, but I’ll figure it out, because I have to.  It will still feel like things are falling down around me, but I’ll learn to be calmer and deal with it.

              When I first started as an aide, it was hard for me to accept the fact that I can’t do everything.  That some days I was only able to get the minimum done.  I thought that I was failing, and or that there was something I was doing wrong.  But eventually I realized that everyone else was in the same boat, and that we were all just doing our best within a tough system.  I learned to cope by focusing on the good parts of my day, not the bad.

              And there were good parts today.  I was able to share a joke with Mrs. F as I readjusted her pillows and gave her something to drink.  Mr. C told me that I must like my job because I’m always smiling.  I was able to teach the new girl a few tricks she didn’t know.  Several people asked me when I would be back.  If they want me back, I must be doing all right.  I’m driving home listening to a good CD, and I have the weekend off before my classes start.

              So I’ll go home, go to bed, and come back next week to start all over.  It will be crazy, and I’ll probably mess up a few times.  But I’ll survive in the end, and I’ll find a way to make someone smile.  Just as I told Mr. C, I really do like my job.  And it will be okay. 

Ghosts in the Room

Sunflower

May

So this is different. I’m become used to being a picture of a sunflower on the Internet, the unseen hands typing away on a computer…or more often than not, my iPhone between shifts and errands. Being here, at Pioneer Networks Conference is…way, way different. It’s awesome, and pretty scary. My hands are shaking so badly I’m beginning to rock the music stand holding my script. It’s part nerves…and part something else. I take my hands off the music stand and clasp them behind my back.

Smile was hard. In rehearsal, I burst into tears because that resident…that woman who sat on the commode and broke through her own aphasia to remind me to smile…she’s gone now. She died a few months ago, and that moment, that memory is so precious to me. It’s been the moment and the memory that I relive each time I think about quitting this job or this field. (Yes, even I have those moments.) And now she’s gone. She won’t ever speak again to me, won’t ever tell me to smile. And experience has taught me that in a year or so, I’m not going to remember her face. It will blur and while I will hopefully never forget her, her face will fade until one day it won’t be her face I see. I hate it, but that’s the truth.

I’m so sorry, I tell her in my mind. I’m sorry that I made you feel bad that day and I’m sorry I won’t be able to perfectly preserve your memory. I sorry HIPAA didn’t let me capture your image so I could always remember your smile, your eyes. But while the details will blur, you will always be part of me…and you’re here in this room now. I carry your ghost with me everywhere. All of us caregivers have ghosts.

I look up from my script and look out over this crowded room and I wonder…how many ghosts are here today? How many silent residents stand behind the people sitting at these table, how many lost loved ones are watching them, watching me? I’ve got well over one hundred myself. How many do they have, these people watching me?

Ok, ya’ll, I think, turning my script to how do you say goodbye? This one’s for you guys, all you ghosts filling the spaces and the hearts in this room.

Oh, boy. And I only thought the room was crowded before I remembered you were here!

How Do You Say Goodbye: Conference Version

Sunflower

May

How Do You Say Goodbye was a post originally published in 2014 (and is available on the Kindle book). It told the story of my raw reaction to the death of a beloved resident and it was also one the posts selected for the CNA Edge Opening Planery speech at Pioneer Network. As I work on memorizing and reading aloud this free-form poem, I realized two things.

1) It is probably one of my favorite pieces of  my own writing ever.

2) The version in CNA Edge: Reflections from Year One was not reading-friendly.

It was literally written on a paper towel, and the physical dimensions of the paper towel limited the number of stanzas and the lengths of each individual line. As I read it aloud, it just didn’t flow right or lend itself to patterns of speaking. I’ve always been a writer, not a speaker, so all this was a bit of a shock to me. I didn’t want to rework the poem, but I also wanted to do it justice.

So I reworked it. What follows is the version of the poem as I read it at Pioneer Networks Opening Planery earlier today…and can I just say, what an amazing experience that was! Thank you to all who were involved in inviting us, working with us and encouraging us to share our message on a new platform. You guys rock!

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The hardest part about this job is losing a resident. It hurts…but you have to keep moving. And while you never really get used to it, you do learn how to handle the death of someone you’ve cared for. Writing is how I cope, putting words on paper is how I make sense of the madness and pain in my world. One time, right after the funeral home had taken the body, I just couldn’t wait. I grabbed a paper napkin out of her bathroom and jotted down what became this poem. It’s rough, but that’s alright. Raw was how I felt when I wrote this. Raw is how I feel when I remember.

A last kiss on your forehead
Still warm to the touch
But soon you’ll be cold
A last whispered “I love you”
Because it’s not just money
That is luring me here.

How do you say goodbye?
You were dying when I met you
They called it “going downhill”
Every day just a little worse
And now you’re dying no more
But how do I say goodbye?

Sponge down your body,
You shouldn’t be so still.
Wash and fold your hands
New sheets for the bed
I can’t say I’m sorry
You’re not in pain anymore

A last touch, then I’m done
And move on to the living
I can’t help you anymore.
I’ve seven other people
Who still need me today;
You’re gone and I can’t cry.

Then tomorrow is here
And you’re still gone.
A new face in your bed,
New stories to learn,
I have to keep working
And so I move on.

It’s a year down the road
And your face is fading.
I guess I’ve said goodbye.
But I sit down and cry,
Because I can’t recall
How I made your coffee.

How do you remember
Everyone you’ve ever lost?
Every quirk, every smile,
All the tears cried together.
Please, can you tell me,
How do I say goodbye?