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The Wit and Wisdom of Edison Terrell

 

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Edison Terrell

Caregiver, author, and occasional contributor to this blog, Edison Terrell offers a unique perspective on caregiving and life. He is currently working on a collection of caregiver related stories and musings titled I Take My Pills with Ice Cream. Edison is a frequent poster on CNA related social media and with his blessing we are sharing a sample of his recent offerings.

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Telling people to leave work at work is stupid and futile advice in Healthcare, but it’s telling that the advice is most often given by those who have bare minimal to zero patient interaction.

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I realize now that the greatest obstacle to compassion is compartmentalization. It’s snuffed out like a candle the moment a person’s humanity is boiled away to simplified descriptors. Compassion can’t survive the process of a human being turned into a list of qualities.

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Some days my motto is “Finish strong!” Most days it’s just “Finish.”

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I think we may have lost sight of the fact that trust and scrutiny aren’t mutually exclusive. When I put on my scrubs, I expect my quality of work to be under examination, always. I expect that my team’s work is at least up to par, and that we navigate our sometimes ethically muddy road as best we can. I have a duty to my clients, my patients, my residents. Because the nature of my job gives me power over them, and power to make decisions for some of them when needed, such as when they’re extremely aggressive or can’t do things themselves. I think that with power over people comes not just a responsibility from within to do your best, but from without to analyze your behavior–in all reasonable terms–that it’s truly satisfactory. I wouldn’t wish anyone to fully trust anyone in my position to the point they turn a blind eye to what one, a few, or many are doing to bend the rules to breaking.

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Even people like me who claim to want to observe the truth as it is in all its harshness and starkness at all times, hate learning the truth and living it. It’s far easier to say “l want the truth” than it is to hear it, and most if not all people–including me–who want the truth won’t hear it the first time or even the first several times. Maybe not the first hundred times.

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Sometimes my compassion overflows to the point everything drops away and it’s just me and the person in need of me… Most times I’m groggy and hate being awake before noon.

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I think to myself “I’m not as nice as I think I am,” and feel good with that assessment, like I’ve gotten to the heart of it: I’ve pulled back the layers of ego and exposed the shit heel underneath. But it occurs to me that by doing just that I’m letting myself off the hook. I might even be using it unconsciously as a shield. So maybe framing my thoughts in different terms will help me. I can be nicer to people. They deserve my kindness and don’t deserve my meanness; I will be nicer to people.

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On the seventh day, the LTC administrator allowed her employees a 5-minute break, realizing for one sane moment she wasn’t actually God in human form. Four minutes into the break she angrily cracked the whip with a “Get back to work, slackers!” because she remembered she was actually the devil’s.

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It’s not the thought or feeling that creates the mood, but my belief and investment in it. A passing cloud is only a passing cloud, no matter how dark or fearsome.

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My client got the news that he would never walk again today. First time I’ve heard those words in real life and they struck so hard I felt them, too. This is a guy who never gives up, no matter the difficulty or how much of a pain in the ass he is. The droop in his shoulders were like a wall coming down.

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Who gets a cold in August? Healthcare people, that’s who.

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I got a call today about a potential new client from a home care agency that found me on Care. They were desperate to get someone but couldn’t match my minimum pay requirement because they “only charge the client a few dollars more an hour.” Bullshit, they bill Medicare at least $45/hour. She said she could give me 10 an hour, so I lied and said I was making 20 at my current job. She said the most she could maybe do is eleven. I waited her out. “Twelve,” she says, clearly getting annoyed. “That’s the best I can do, I don’t pay anyone that much.” I said I’d meet her Friday

That’s how my daddy taught me. Lie like a dog, cuz nobody’s first offer is gonna be what you deserve. 12 isn’t what I deserve, but it’s closer than 10. Whether I take the job or not is no consequence, the most and truly only important thing when dealing with these types is squeezing them for as much as possible.

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Every aide and PT in this place is in awe that I can work with my client almost every day. They say “How do you do it? He’s so aggravating!” And I reply “I do it so I can leave my wife something behind when he finally drives me to murder-suicide.” We both laugh at that, but I’m not sure I’m not serious.

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I think if I could ask the heart the value of this kindness or that kindness, big and small, the heart would answer that they have equal value. The ego calculates the weight of goodness but the heart perceives a million dollar donation the same way it does a few pennies.

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There’s a vast gulf between a simple job and an easy one.

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Gotta say, for a guy who recently learned he may never walk again, my client has been killing it in the gym. Privately to himself, and occasionally out loud at the end of his sessions as he collapses in his chair sweating from exertion, he tells me in a hoarse voice “I can’t believe what she said. What a discouraging notion.” But he still puts his feet on the modified exercise bike, still glances at the bars now and then from his position on the mat, and unfailingly puts everything into the workout, no matter how banal or degrading it might make him feel. This guy pushes all my buttons every day but I can’t help grudgingly admiring the guy and raving about his determination. I hope he keeps it up to the end and I get to witness one of those miracles I only see on television.

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I’m more make-believe than solid on closer inspection.

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I find sad/sappy music is the best for my drive to work. I tried my workout playlist a few times to psyche myself up but it just made me more tired. Downbeat stuff, though, paradoxically lifts my spirits. Maybe misery really does love company.

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I have this prank I do at work where I sign up for tons of doubles and extra days and shit and this one part of my brain is like “Dude, what are you doing we’re gonna have no time off!” and I’m like “Lol don’t worry about it, bro, I’m pulling a prank. I’m not actually gonna do any of these shifts.” But then the day of the shift rolls around and I realize I’m broke and need my job more than I need to sleep and I go in anyway and it turns out I was pranking myself the whole time.

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Changes that threaten me, when looked at a little more deeply, don’t actually affect me at all. Just the ideas that I hold to be me. What I want. Everything that bothers me only does so because it conflicts with an idea of the way things ought to be. But me, the closer and harder I look for me, the less I seem to exist as I believe I am. Fear is the glue that holds this false identity together, and when that fear loses its grip, so do I, and I disappear in the best way.

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Every day is another priceless lesson in patience and compassion, and I mean that sincerely.

 

There’s Nothing Like a Good Dog

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Yang

As I begin the HS care routine, my thoughts wander to home, to Jenny and the girls. I always get a little tug of homesickness around this time in the shift. The girls are picking out their bedtime stories right now, each gets to choose one book and they pick one together.  They’ll gather around the bed of our youngest – along with our little Australian Shepard, Kip – and Jenny will read to them. Then, she’ll tuck them in, kiss them good night, and they’ll drift away with Wynken, Blynken and Nod. Not being there is the hardest part of being here.

Tonight, it’s worse than usual because I’ve been pulled to a unit that I’m not familiar with and I’m the outsider. I don’t know the staff well and I know nothing about the residents in my group, save for the information on my “cheat sheet” and what the other caregivers have time to tell me. For the rest I have to depend on what I can glean from the residents themselves.

Ziggy can’t help me much in that regard. He has a pleasant demeanor and he follows simple cues, but he doesn’t respond to all of my questions and when he does respond it’s with a nod or one word answer.  And he seems reluctant to maintain eye contact.

In the dietary column, the cheat sheet states that Ziggy is a “feeder,” an uncomfortably crude way of saying that he can’t eat without total assistance. But the information is accurate, as I discovered at supper time. He loves to eat – that isn’t on the cheat sheet – I couldn’t get his dinner on the spoon fast enough for him. He polished off his tray in ten minutes and accepted a second dessert when one of the regular caregivers offered. For caregivers, there is something satisfying about a resident who likes to eat. And I could tell from the regular caregivers’ interaction with him that he is just about everybody’s favorite. That isn’t on the cheat sheet either.

There is a lot about Ziggy that isn’t on the cheat sheet. You can’t tell a story in box.

He nods as I explain that I’m going to help him on to his bed, but he says nothing. Under the “transfer” column of the cheat sheet, he is listed as 1HH, meaning one human help. He is as tall as I am and not thin, but if the sheet is up to date, he should be able to bear weight and I should be able to get him into his bed without having to ask the other caregivers for help.

I position his Geri chair parallel to his bed, about midway between the head and foot. This leaves room for me to help him stand and pivot 90 degrees, then ease him into a sitting position on the edge of the bed. The next step is to use the edge of the bed as a fulcrum and help him swing his legs into the bed, effectively creating another 90 degree pivot. If all goes to plan, his head will end up straight on the pillow.

I pause after getting him on the bed. I always like to take a moment when a resident is sitting on the edge of bed, whether it’s in the process of getting out or going in.  Just to let him get his bearings after the change of position. Sometimes I’ll sit on the bed with him – for just a moment or two – steadying him if necessary.  

As I’m sitting next to Ziggy, my attention is drawn to two photos tacked to his personal poster board hanging on the wall over his night stand. Other than the Activity Department’s weekly newsletter, the photos are the only items on the board.  In most of the residents’ rooms these poster boards are covered with various personal items such as photos, greeting cards, notes, and assorted decorations. For our residents, these items sometimes serve as tangible, but slender connections to the lives they had before they came here. For us, they provide tiny shreds of evidence of who they are as people.

One of the pictures is an 8×10 of a gorgeous pure bred German Shepard standing in someone’s front yard. A smaller photo shows a much younger Ziggy kneeling next to the Shepard with his him arm draped across the dog’s back. Both photos are faded, dog-eared, and peppered with a dozen thumb-tack holes along the top edges.

From my spot on the bed, the larger photo is within arm’s reach. I lean over, remove it from the board, and hold it up in front of Ziggy.

“He’s beautiful, Ziggy.”

Ziggy reaches for the photo and I hand it to him. He studies it and nods. “Chummy is a good dog.”

Okay, present tense then. I’ll follow his lead and we’ll stay there. “Yes, he looks like a great dog.”

He nods again. “Chummy is a good, good dog.”

“Are you best buddies?”

“Yeah. He’s my dog.”

He still hasn’t taken his eyes off the photo.

 “Do you play with him?”

“Yes… he plays.”

 “There’s nothing like a good dog. I have one too.”

He looks at me, eyebrows slightly raised.

“Here, I’ll show you a picture of her.” I lean back and retrieve my wallet from my front pants pocket. I slip a small photo of Kip from its protective plastic sleeve. The picture shows Kip with all four legs off the ground, snatching a tennis ball in mid-air.

Ziggy is impressed. “He’s a good dog!”

“Yes, she is,” I agree, but I stand firm on the gender. “She loves to play fetch. We play until I get too tired to throw the ball. I always get tired way before she does.”

Ziggy chuckles, he’s familiar with that story.  I hand the photo to Ziggy. He’s still holding the picture of Chummy in his other hand and looks from one photo to the other, apparently comparing the two dogs.

“Ziggy, do you suppose Chummy is more expensive to feed than Kip?”

He grins, “Oh yes, Chummy eats a lot.”

“Kip loves to hunt.  One time she ran away and came home with the leg of a deer. And rabbits don’t dare to come in our yard anymore. Does Chummy hunt too?”

“Oh, no, no. Chummy doesn’t hunt.” He hands me Kip’s picture and returns his gaze to his Shepard. “Chummy is a good dog.”

“Do want to hear a secret about Kip, Ziggy?”

He looks back at me. “Yes… what is it?”

“My wife let’s her sleep in our bed.”

Ziggy shakes his head. “Chummy sleeps in his own bed.”

“I know, we’re not supposed to let her on our bed. But we do anyway.” I put my hand on his shoulder and say, “At least there is one thing that we both know…”

He looks at me again, “What?”

“… There’s nothing like a good dog.”

He smiles and nods. “Yes, Chummy is a good, good dog.”

I proceed with his HS care and wonder if Ziggy will dream about Chummy tonight. I hope so.

I also wonder what other connections we could make if I had more time and knew more about who Ziggy is.

Unsafe at any Weight

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Minstrel

I became a CNA at an age at which most people are retired. By this time most CNAs have backs, knees, shoulders that are broken down or on their way to that. On my first day on the job, the CNA I was shadowing asked, “HOW old are you? You’re never going to be able to do this job.” Biologically speaking, I could have been a grandmother to some aides. But I was in better shape than many, in terms of weight and flexibility. Some aides arrived at work groaning, “My back is killing me!” “My knees are soooo bad today.”

 In reality I could do everything a CNA needed to do. But there was one thing I couldn’t / wouldn’t do: move a two-person assist alone. At first the experienced aides helped me. But soon they expected me to care for these residents without help, as they did. There seems to be a machismo culture among aides: “I can do this on my own.” I was saved by the fact that our unit supervisor had posted a list of all residents who needed the assistance of two aides to be moved. When I needed help I asked for it and was given it. But other aides wouldn’t ask me or each other for help, except in the toughest cases.

Who is a two-person assist? A person doesn’t have to weigh much to be a dangerous dead weight when she needs to be moved. Even frail, thin persons become dead weight when they don’t have the bodily strength to stand or the cognitive capacity to follow instructions. The CDC, OSHA and other organizations have developed algorithmic guidelines which state in effect that unless a person is both fully weight-bearing and able to cooperate in the action (that is, able to understand what is needed and able and willing to do what is needed), then the resident needs two persons, sometimes more, and sometimes also requires mechanical equipment, to be lifted, repositioned, transferred. Fellow aides: How often is this the rule of thumb where you work? Given staffing levels, how many of you have time to stop to help others with residents who should, under the guidelines, have the assistance of at least two persons when they are moved? How many of your co-workers have time to help you?

Unfortunately, as far as I’ve been able to learn, failure to provide adequate staffing to ensure two-person assists for all non-weight-bearing residents isn’t an OSHA violation that has any penalty attached to it. This is a guideline and not a mandate. Thus LTC homes might not be as worried about compliance with these guidelines as they are about Medicare rules. But some states might have tighter rules. And guidelines do have some weight in policy-making in LTC homes.

Despite my facility’s two-person assist list and despite all the guidelines, many aides chugged right along, lifting residents without help. Both the resident and the aide are at risk of injury (or at least distress), but aides insist on flying solo. Sometimes we’re our own worst enemies. CNAs: Let’s call a truce with our aching bodies! It’s worth a try to work with our unit supervisors to develop a two-person-assist list, using it to transfer residents more safely and comfortably.

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.

“I’m Just Doin’ My Job”

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Minstrel

One of my all-time favorite movie lines was spoken by Paul Newman in Cool Hand Luke.  Luke, the non-conforming prisoner in a tough southern prison, refuses to accept the prison’s status quo.  His conduct is a cascade of rebelliousness, until finally the warden orders Luke to “the box.”  The box is a small tin-roofed building, the size of an outhouse, under the blazing sun in the middle of the hot, dry prison yard.  After Luke spends twenty-four punishing hours in the box, the guard releases him.  As he does he says, “Sorry Luke, I’m just doin’ my job.  Ya got to appreciate that.”  Luke replies,  “Nah, callin’ it your job don’t make it right, Boss.”   

Calling it our job doesn’t make things right.  Among the most pernicious problems in long-termcare homes is staffing shortages.  With a census of 25 to 35 residents or patients needing skilled nursing and/or dementia care, there might be only three to five aides scheduled to work a shift.  (Then there are the last-minute call-outs).  If the aide is lucky, very lucky, she may have only five or six persons to care for.  The more frequent reality is having seven to ten persons needing care.  Remember that cacophony of call bells that May wrote about?  Blame it on short-staffing.  And the resident pleading for you to take her to the toilet?  Oops, it’s already too late…  The resident teetering perilously as we rush to prevent a fall? … And the time you lifted a non-ambulatory person by yourself because there was no one around to help?  What about those wheelchair bound residents who haven’t been taken out to feel the fresh air in weeks?  The hits just keep on comin’.   And we keep right on keepin’ on, because it’s our job; right?   

No, it isn’t.  We simply can’t do our jobs as CNAs adequately when we’re so understaffed.  What most determines the quality of care is the staff-to-resident ratios (‘duh’).  I challenge anyone to find an aide who disagrees with this.   Yes, staff need to be trained in good care practices.  Yes, we need to have certain supplies available (soap, towels, functioning hospital beds, appealing food, etc.).  But the key to quality care, to person-centered care is PERSONS.  Staff.  

We continue to work in short-staffed conditions we know violate our residents’ right to good care.  (See medicare.gov for a description of rights of persons in nursing homes.)  If we ‘complain’ to management about short staffing (and that’s how it’s viewed, as a petty complaint), we’re told sweetly that the staffing levels meet the state requirements.  And that’s probably true, because industry lobbyists have made sure that state regulators don’t burden the long-term-care industry with costly staffing requirements.

We complain about these deplorable conditions all the time.  As CNAs we’re mandated reporters of abuse.  (I guess we’d better not think about that one too much!)  But we tolerate abuse that residents endure as a result of understaffing.  Abuse isn’t just about physical or sexual assault.  It’s also about neglect and emotional abuse.  If I neglect a call bell for so long that a resident is left to soil himself and remain in his soiled condition for hours, that is abuse.  If I say to a resident who asks to be taken to the toilet, “Janie, I just put a clean Depends on you; I can’t get you back into the Hoyer lift and take you to the toilet, you have a diaper on, you can use that,” that is abuse.  Abuse is ridiculing a resident who cries for her mother all afternoon; scolding a resident who spills her drink all over the floor; ignoring the call bell of a resident who constantly asks to be taken to the toilet minutes after the last toilet trip, because we know she ‘doesn’t really have to go.’  Well, she needs something and it’s our job as aides to find out what.  “But I don’t have time for all that.  I have seven other residents to get to.  I’m just doin’ my job.”  

So what can we do?  Unlike the workers of the 1920’s and ’30’s, we can’t go on strike to win better working conditions.  We’re caring for the sick and the frail, not assembling cars.  But if we can’t leave the floor for a sit-down strike, we can use our cell phones as weapons in the revolution for better care.  Call your county or state abuse hotline every time aides have more than six residents to care for on a shift.  (And don’t count the LPN or Medication Aide in your ratio if she isn’t providing care, even if management does.)  The state regulators aren’t always thrilled to receive reports of abuse because they are short-staffed too, and don’t have the means to investigate all complaints properly.  They don’t always to a good job, for the same reasons we don’t always: because they’re understaffed and a little intimidated by their bosses.  

Revolution isn’t about violence and nastiness. (Remember Gandhi and Mandela and Rosa Parks.)  It’s about patient persistence and never giving up as long as change is needed.  It means taking that first step.  Maybe our first step will be a phone call.  

Cueing for Caring

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Minstrel

I volunteer in a long-term care home which serves, among others, those with dementia.  The aides in this home have had dementia training and the care level is already exceptional.  I think this is because management expects the aides to…well, to care — not just to ‘provide care,’ and because management models this value.  Still, the nursing supervisor wanted a performance boost.  Training.  

Aides benefit from understanding dementia and from exposure to the best ideas on dementia care.  But what’s most important about staff education is that their new knowledge lead to new workplace habits.  Training that doesn’t result in improved care is about ‘CYA’ compliance for CMS, not about caring.  How do we ensure that training actually improves how we do our jobs?  How do we transfer the training lessons from the training site to the workplace?  As a reinforcement tool, cueing is used very effectively in memory support homes which adopt Montessori methods.  Are there some short-and-sweet (and fun) cueing tools we might use to reinforce training? 

If there were just a few practices that would transform care, I believe it’s those illustrated in the poster below.  These are tried-and-true best-care practices from experts like Teepa Snow and Naomi Feil.  Let’s try turning these ideas into cues to use where we work: nurses’ stations, employee lounges, food prep areas, in the laundry, at the time clock.  Hanging icons separately in the halls—for example, the little cheerleader—may remind us all to encourage and praise residents’ efforts.  We’d be surrounded by encouraging reminders.  Cues keep us mindful of the kind of environment that is most beneficial for all residents, especially those with dementia.  

Along with cueing, another way to reinforce training lessons is the use of rewards of some kind.   The next step is to develop a rewards program for aides who go the extra mile to use these ‘care commandments.’  This is trickier but surely warranted for aides working to create an environment that says, “We Love Our Residents.”

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It will be okay

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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. 

Comfort and Joy

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Minstrel

At the end of my first year of work as a CNA, when it came time for my job evaluation, I was asked what my job goals were.  I wrote, my goal as a CNA was for my residents to go to sleep smiling.  Whatever the rest of the day might have been like, bedtime belonged to me.  I wanted each resident to fall asleep feeling loved.  As we did the bedtime ADLs I played lullabies on my IPod.  I hoped that some positive feeling would stay with them through the night.  

How horrible it must be for a person’s last experience of the day to be one of distress because someone rushed them, tugged at them impatiently, scolded them to hurry.  Didn’t smile.  Didn’t speak to them by name, maybe hardly made eye contact. Didn’t wish the resident goodnight as they left the room.  (Didn’t kiss them goodnight!)  Dementia can be a world of isolation, confusion, fear. 

Confusion and fear, or love and joy: which will be my residents’ last companions of the day?  We all know what kind of aides we want to be.  But we let ourselves be pushed by ‘the system’ into being the kind of aides we ourselves don’t like.  Don’t!  Giving even just an extra two minutes to each resident, what a difference we might make at the end of their day.  

There must be joy!  For the sake of our residents.  And for the sake of our own joy-seeking souls.

Everything is Amazing

 

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Alice

      I don’t know how to live my life right now. EVERYTHING seems new. Opportunities abound and I feel such a potential for life’s possibilities. I started writing for this blog because I didn’t think it was ok for the system to collectively mistreat the most vulnerable among us and blowing the whistle on one facility did not have the effect I had hoped. Maybe it was providence that brought Yang, May and I together. Maybe it was Carl Jung’s theory of synchronicity or meaningful coincidence. I don’t know. I only know that for me, this continuing journey has become one of the most important, most valuable of my life. This opportunity that has allowed me to be part of a creative solution and concrete change. Together, the three of us get to reach others and express ideas that have long been buried under the false notion that caregivers and by proxy, those within our care are unworthy of being heard. 

    All I have ever wanted out of my life is to leave an impact that makes this world a little better than it was before I entered it. I get to be a part of this amazing adventure with Yang and May and with all of you, our readers. What could be better than that? Add to that a blossoming relationship with a long lost love, the opportunity to help a new group of young women new to recovery, and public speaking in New Orleans, and suddenly my life is unrecognizable.

      Everything is amazing but with that comes the fear and self-doubt that always accompanies the unfamiliar for me. That’s okay too. It is in such moments that true growth occurs. While part of me wishes I could feel nothing but the good stuff, I know that there is no honesty in that.

      Today, I am willing to feel and face my fears in order to embrace life’s potential and grow from the authenticity of those feelings. I don’t know how to live my life right now. EVERYTHING is unfamiliar and that is amazing and knowing that is enough.

The Magic of Music in the Chaos of Long Term Care

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Minstrel

Being a new CNA is challenging.  Yes, in training I learned how to make a hospital bed with a mannequin in it.  To wash my hands according to procedure.  To transfer fellow trainees with a gait belt.   But now I’m in the unit, needing to transfer a dear little wheelchair-bound lady who can no longer speak and who, while petite, is a dead weight when I try to lift her.  And she is contracted.  Her arms remain tight at her side as I try to undress her.  Who is more distressed, ‘Goldie’ or me?  

Goldie, in her mid-90’s, is still a beautiful-looking woman with twinkly eyes and a smile that glows.  So as I work with her I sing “Glow little glow-worm glow and glimmer” to her.  (Are the Mills Brothers spinning in their graves?)  I’m not sure Goldie gets the words at this point, but I’m laughing as I sing and she laughs back.  She relaxes.  I open my arms wide to invite a hug and Goldie opens hers!  Now I can get her blouse off.   Mission Accomplished!  I don’t know what made me sing to Goldie that first time, except that she was such a sparkly person that being with her made me happy.   My singing is not a pretty sight.  But as one musician said to me, “They don’t care what you sound like if you love them.”    

Soon I was singing to all my residents as I did ADLs (Activities of Daily Living: bathing, dressing, toileting, eating).  Sometimes a resident would sing along.  Yes, this did mean that it took me longer than it took other aides.  One of my caregiver-mentors would say to me, “We don’t have time to talk to the residents.  We don’t have time to sing to them.”  But I persisted (quietly) and began to carry my IPOD nano and a small wireless speaker with me.  Now we had hundreds of songs, sung by the voices these residents might recognize: Frank Sinatra, Rosemary Clooney, The Mills Brothers, Judy Garland, etc. etc.  One morning as I brought residents to the dining room for breakfast I played Oh What a Beautiful Morning.  Soon the room was singing!  And smiling.  In time other aides began asking, “Do you have your music with you today?”   For one thing, I think they liked some of this old music.  And they saw that residents often became calmer and more cooperative when they felt ‘sunny.’  Music does that, connecting us to each other and to our memories.  

As my IPOD played the Marine Hymn or Anchors Aweigh, veterans walked to the dining room with new determination.  Accompanied by a waltz, a resident with unsteady legs could be coaxed to move more confidently.  Sometimes we can engage a resident with a song we know she enjoys, singing together as we walk to the toilet.  Because we’re in the midst of something pleasant, a resident might hardly notice that an ADL she usually resists is about to happen.

Some residents can no longer speak; they might no longer understand language.  The saddest reality is that some can no longer hear.  (Even then, rhythms might be felt.)  Not every musical event works every time with every resident.  Nevertheless, with many residents, music can be magical in its effect.   Music has a profound positive effect so often, that it seems crazy not to try it.  

When I am old and grey and full of sleep… (thank you Mr. Yeats), they can take my food, they can have even my books.  But I want my music.