Tag Archives: Caregiver perspective

The Art of Knowing


Corey
You do not like anyone to see you looking less than impeccable. You don’t remember that right now, so I will remember it for you. Your perfectly coiffed hair in the framed photos and closet full of matching Alfred Dunner suits tell me what you cannot. So I wash you up, despite your grumbling and put on your favorite turquoise outfit. I hand you the lipstick and steady your hand as you apply it and the previous frustration you felt melts away to a smile. I know you. You can’t make it too easy for me and at the end of our morning routine, you look pretty and I look like a sweaty mess. You chuckle and say thanks.
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You have lucid moments when you realize that your mind isn’t working the way it should. These moments break your heart and mine, as I watch you work through the reality that your mom died decades ago and your sister is in another country only to forget again by my next shift. Right or wrong, I wish those particular moments of clarity wouldn’t come; that you wouldn’t have to grieve anew every time your mind decides to tear that scab off. There is nothing I can do but walk with you through it. Thankfully, those dark, cobwebby moments are few and far between. You are my night owl, regaling me with your extensive knowledge of music. The mind is an amazing thing. You struggle with the concept of saliva and yet you know every word to countless songs from Mack the Knife to Proud Mary. It is your love of music and dance that inspired the idea of early morning dance parties. You never like for me to be out of your line of vision, and yet when another resident is having a difficult day, you are the first to sit beside them and hold their hand. You are able to put aside your own anxiety for others.
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You are a natural born healer. You were a medic in a war in which you never killed a single person. You told me that your calling was to bring life not to take it. You have told me this countless times and I never tire of hearing it. You are bi-lingual. You are witty. You get frustrated sometimes because you spent a life time caring for others and it’s hard when you realize that you need care too, now. I tell you that what little help we do for you is nothing compared to the wealth of wisdom you bring us every day. You are dapper and do not like to leave your apartment without your hat…your chapeau. That’s French. You taught me that.
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You are an artist. Your apartment is a gallery of your work. As your thought process changes with this disease, so does your artwork and yet I see you in all of the paintings. You are head strong and I have to resort to some creative trickery to get you to allow me to help you at all, not that you need much help. I know it isn’t that you don’t want assistance as much as you don’t want the reminder that you need a little help every now and then. I get that. I would feel the same way. And you are far too young for this. I am mad at the disease for you, but rather than focus on that, I look at your art work and remind you how amazing you are. How incredibly talented you are. How lucky I am to have such a friend. And I mean every word of it.
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At the very heart of what we do as caregivers is the art of knowing. This is a tiny sample of what I’ve learned about those in my care over the years. Knowing them as individuals not only helps me improve the quality of care for them, but also deeply enriches my own life. I am a better person for having known each and every person who has ever been in my care. They are more than a room number. They are more than a diagnosis or level of mental acuity or a two person transfer. They are people; flawed, nuanced, interesting, complex people who have lived full lives. As they walk through their sunset years, they certainly have earned the right to be known as something more than room 346.

Long Term Care’s “Trans” Issue

 

 

Minstrel

When the issue of CNA wages is raised, the response is never “Sorry, we don’t think you deserve better wages. We’re not going to pay you enough to live on if we can get you to work for peanuts.” No: administrators will say, “Yes, we know aides are worth more and we would love to pay higher wages. We just can’t afford to. The money isn’t there.”

Are you sure about that? Show me the money. Let us see your budget. Every organization has a budget, detailing what comes in and what goes out and where it goes. Long-term-care administrators tell us they can’t find the money to increase wages or benefits of aides. Maybe so, but we aides would like to be included in the search.

This is about transparency in money matters. If you attend conferences and webinars and read articles on how to achieve quality care in long-term-care homes, you will often hear the word ‘empowerment.’ Residents need to be empowered. Persons living with dementia need to be empowered. And direct-care workers need to be empowered—that’s what the experts say. What could be more empowering than having a say in how money is spent? Including aides in a transparent discussion of resource allotment would demonstrate trust in us, respect for us, and appreciation for the creativity we might bring to problem-solving. There may not be a wealth of money being wasted or misspent. But aides are in a unique position to see opportunities for cost savings that others might overlook. As a CNA I saw the amount of food that, at the end of every meals wasn’t in the stomachs of residents but in black plastic waste bags. I saw the wastefulness in our use of disposable items like plastic cups, paper plates and napkins. Without impacting the welfare of residents, aides might find multiple ways of cutting costs so that money might be re-directed. We might bring fresh vision to decision-making about saving and spending. Give us a chance!

Perhaps administrators protect budget secrecy out of embarrassment over the wide gap between the salaries of aides and the salaries of the executive and managers. Or out of worry that this knowledge might lead to poor morale and workplace unrest. Maybe the organization worries about privacy rights; why should anyone’s salary be public knowledge? First of all, budget transparency doesn’t mean that individuals’ salaries have to be known. (However, if it did, would this be so bad? Americans are more open about their sexual practices than about their finances! We know the salaries of the President and members of Congress and of the CEO’s of publicly-traded corporations. It is a tool of accountability.) There are ways to protect information about individual salaries (as the federal government does for federal civil servants) while making information available about salary ranges, the percentage of the budget spent on various classes of jobs, etc. This privacy issue is an excuse, a ploy to halt discussion before it starts. It’s not a justification for saying no to transparency.

Aides aren’t children. We’re capable of understanding issues, of being reasonable. We can understand that some positions merit higher wages than others and that some employees will deserve to earn more than others. We can be patient about wage increases. But we shouldn’t be shunted off to the side when budgets are discussed, as if we were just another piece of mechanical equipment in the workplace. We need to breach this wall that seems to create a ‘them’ and an ‘us,’ the intelligent responsible people on one side and lower class workers on the other. We are all part of the care community; we all want to improve it. One way to do this is to make budgets more transparent. If we want to retain employees and attract new job seekers, salaries and working conditions must become more appealing. I suspect that money might be found to do this, if budgets were transparent to all stakeholders.

We hear a lot about the need for culture change in long-term care. Budget transparency is a culture change issue that we don’t hear about yet. Let’s hear a call for transparency from the leaders of the culture change movement. Let’s hear it now!

The Facts About CNA Wages

 

Bob Goddard

There is a great deal of confusion within the CNA community regarding the issue of wages and how it fits into the larger long term care picture. While there is general agreement that caregivers are underpaid, that perception is primarily based on personal experience, that of our own and of others. This anecdotal evidence is useful in its own right, if for no other reason than it is overwhelming. However, discussions regarding the wage issue are characterized by emotional responses and typically lack references to data that back up the arguments.  Solid facts are sometimes offered within the CNA online forums, but usually not in any kind of comprehensive or purposeful way.

In order to help us get a more accurate picture of the state of direct care work in this country, below is a list of just a few of the more significant statistics. The primary source for these is a PHI fact sheet published in August of 2017.

I think this kind of short list might be useful for those who argue for better wages for caregivers. In future posts, I’ll give my take on what I think these statistics mean.

First, just to get a sense of the scope:

15,400 long term care facilities in the United States

1.4 million residents live in these facilities

600,000 CNAs work in them

But those 600,000 are only 13 percent of the total of direct care workers employed in the United States, because…

4.5 million direct care workers are employed in all types of situations, including home care, Continuing Care Retirement Communities, Assisted Living Facilities, Hospitals, Centers for Developmentally Disabled, Mental Health, Substance Abuse, Employment & Rehab.

Second, the demographics of caregivers:

91 percent are female

Half are under age 35

Half are people of color

Half have some college, (about 1 in 7 have associates degree or higher)

20 percent were born outside of the United States

Third, the money issue:

$12.34/hr is the median wage of CNAs (half make more, half make less)

$20,000 is the average annual income

Half work part time at least part of the year

17 percent live below the poverty line (compared to 7 percent of all American workers)

40 percent receive some form of public assistance

72 percent of long term care is finance through public programs (mostly Medicaid and Medicare)

Finally, the demand for caregivers is growing:

60,000 more caregivers will be needed by 2024. It is one of the fastest growing occupations in the United States workforce.

1 in 2 caregivers leave the job within 12 months. And more LTC workers are leaving this sector than entering it.

I would encourage anyone who is interested to visit the PHI site where more information like this can be found. Of current interest is the ongoing 60 Caregivers Issues series where they tackle a whole range of issues regarding our work, such as caregiver wages, training, recruitment and retention, and advocacy.

Next week, I’ll share what I think some of these numbers mean for the larger long term care picture.

In the Wee Small Hours


Corey
Working the graveyard shift on a memory care unit…there really are no adequate words to describe the experience. In many ways, it’s the most challenging experience I’ve ever had in this field. I have twelve residents on my hall and on any given shift there are four to six that won’t sleep. It’s a crapshoot whether it will be an all night dance party full of fun or a nightmarish landscape over which I have little control. Mostly, it’s some combination of the two.
“I think I’m dead.”
“You’re not dead.”
“I might be.”
“ You’re not.”
“Ok. If you say so.”….I have that exchange at least once a week. This particular resident is very matter of fact about the whole idea that she might be a ghost, as if she finally figured out why her life has become so strange and unrecognizable. Death, however final, at least made some sense to her. The disease that has ravaged her mind and slowly robs her of who she once was makes no sense at all. She is still in there, though. Her caustic wit cuts through her mental fog; a beam that lights brief paths to moments of clarity in which who she is underneath the Alzheimer’s disease shines through. She loves music. All kinds of music and she loves to dance. She hates tuna fish. If she doesn’t trust you, she lets you know it. She doesn’t respond well to formality, preferring warmth to surface level pleasantries and when she laughs, it is full throated and from the soul rather than polite titters hidden modestly behind a handkerchief. This is a woman who does not bother with giggles. She laughs like she means it and I love that about her.
Those are the moments that I hold onto when the bad nights come; when my people wander in the darkest hours of the night, confused and afraid. When she is having a difficult night, she doesn’t sleep.
“I’m frightened!”, she tells me. Eight hours straight of I’m frightened. And when I’m on a round and out of her sight that fright turns to panic until I am finished helping another resident and she can lay eyes on me again. The best I can do to help her through those nights is to continuously remind her of who she is; that she hates tuna fish and loves music and loves to dance. That helps some, for a little while…but I have eleven other residents who also need me and when three or four of them are having a difficult night at the same time I feel like I’m drowning in my own powerlessness. I can’t cure dementia. I can’t bring back dead mothers or lost dogs from their childhood. In the light of day, with the activity and structure of the daily routines, redirecting is much easier. At three in the morning, it is much more difficult to escape the ghosts of the mind. That’s true for me, so I can’t imagine how hard it is for them.
When I first started on this hall, those shifts were so emotionally exhausting that by the time I punched out, I was feeling something very close to despair. I do not do despair very well. I haven’t for a very long time. Despair leads to giving up and that is quite simply not an option. Besides, those were only the shifts when it seemed that everyone was having a bad night at once and as painful as they were for me, it was exponentially worse for those in my care who were actually living through it.
So much of this field is trial and error. I decided to go back to my basics; ideas and tools I learned years ago when I worked in memory care on first shift. The hours are different and as are the mental state of those in my care but certain truths transcend from day to night. Consistency is always vital in memory care. If I say I’m going to do something, I follow through. I learned my residents, their patterns and preferences and the best night time bathroom times for each one individually and developed my routine. I keep it consistent but flexible. I work around them. If a lot of my folks are restless, I have a midnight snack party and play calming music. My night owls like Law and Order. It’s funny…the can’t follow the show but they seem to remember enjoying it and that’s enough. All of this has helped a great deal.
Of course there are still really tough shifts when events seem to snowball, but they are less frequent and I am better able to deal with them. One of my favorite aspects of my work is that in order to be most effective, I have to learn continuously. Anyone who says differently isn’t doing it right. I have been blessed with the support of those who love me most, both in and out of the field. It is impossible to give up when surrounded by people who believe in you. I walk in the footsteps of those caregivers who trudged the path before me and passed on what they know. At the end of the day, good or bad shift, daylight or in the still of the night, I love what we do. I love writing about what we do. I love that I see the value in what we do and I love those in our care for whom we do it.

Well Bully for You


Corey
I wanted to write about memory care. I really did, about how it feels to come full circle and how much I love the challenge of constantly adapting but that post is going to have to wait. As much as I would LIKE to write about my new job assignment, I feel COMPELLED to tackle a different topic: bullying. On the surface, it seems a simple enough problem to discuss. Don’t be a jerk. ‘Nough said…except that as with so many other issues, bullying is a deeply rooted systemic problem that will never be solved without an open and honest examination of how and what it truly means.
Most work places have a zero tolerance policy for physical conflict. That’s a pretty low baseline. I’ve never actually met anyone who showed up for work one day and randomly started punching people, so as far as I can tell that is a cover your ass policy that does little to nothing to curb the problem. If things have gotten so bad that there has to be a no punching rule then somebody has dropped the ball somewhere.
Did you hear?…Well, First shift…If second shift…the new girl…How many conversations start like that? It catches faster than a forest fire and suddenly everyone is angry over something they heard second or third hand. Everyone gets in on the action, morale goes down, quality of care goes down, communication becomes petty and useless and I feel like I’m in fifth grade again. It’s ridiculous and I am over it.
It’s modeled behavior. Supervisors act as if they are confused as to why there is chaos on the floor. It’s baffling. Of course there is dysfunction on the floor because there’s dysfunction in the office. I have yet to work in a facility where I didn’t know exactly how the supervisors felt about each other; where I didn’t know which caregivers were favored on which shift. It’s impossible not to hear the claptrap. This along with an inconsistent application of consequences inevitably causes resentments. If management doesn’t hold themselves to a higher standard, why would they expect it from those who work under them?
It’s not just caregivers that are on the receiving end either. New supervisors come in and before they even have time to adjust, a collective snap judgement is formed by the members of management who have been there longer. Suddenly everyone from the office down is berating the new kid on the block. I have to wonder, for all the criticism regularly heaped on new people, how many senior employees have reached out their hand? How many have said, “Man, I know how tough it is to be new. I remember when I first started. I know how overwhelming it can be. If I can help you or you have any questions, just let me know”? Now THAT would be a refreshing show of true leadership. Sadly, it’s much easier to bitch about a person than it is to solve a problem.
It’s rampant in the online CNA support groups too. The helpful posts and genuine questions are often buried under posts that take unnecessary digs at other people. This co-worker is lazy. That co-worker calls out. So much of it is catty, as if one can’t feel good about themselves without putting another down. It maddening and ugly and I don’t understand the point. Unless a resident is being put in harm’s way, there are better ways to solve the day to day troubles of working with others than to engage in pettiness. Those in our care handle living with cancer, dementia, Parkinson’s, and mental illness better than some caregivers handle having to stay five minutes over or putting a trash bag in a trash can; better than some supervisors handle sharing an office. It’s a little pathetic.
The truth is, I’ve never had a problem with those from other shifts who work my hall. I do my best and respect my co-workers and in return they seem to be just fine with me. Our halls run smoother because of it and those in our care get the attention and energy that would be wasted on engaging in drama. For the most part, when I put good out I get good back and I trust my own experiences rather than the gossip that runs rampant.
Be it in the workplace or out, bullying has become an epidemic that rots the best and empowers the worst of the human experience.
It is the worst kind of groupthink and it scares me how normalized it has become in now. When did it become socially acceptable to rip another person to shreds simply for disagreeing with you. A single person behaving in such a way may hurt another’s feelings, but when it becomes groups of people tearing others down, real damage is done. It is leading us down a dangerous road at breakneck speed.
We who work in Long Term Care exist in a microcosm of the outside world. Because of this we have the ability to see the damage that collective bullying is doing on a small and intimate scale within the walls of facilities. In this world, we can do something about it. We can be helpful instead of hurtful. We can lift each other up instead of knock each other around. We can speak up, even when it’s hard, even when it is to those in charge. We can choose not to engage in toxic behavior. In doing so, we will be happier, our residents will be calmer and our co-workers will have a window into better ways of handling conflict. Maybe, just maybe, we can learn these lessons on the job and use them off the clock. We can be an example for others. After all, chaos and negativity may be contagious but so is positivity and hope. The choice is ours.

CNA Edge at the Green House Project Annual Meeting

 

 

Bob Goddard

Last Wednesday, we had the honor of speaking at the Green House Project’s annual meeting in Fort Lauderdale. It was a great experience for both Corey (the artist formerly known as “Alice”) and me (in a previous life, “Yang”). The Green House Project is on the cutting edge of elder care and serves as model of long term care done right. We were delighted to be asked to be a part of this event and it was uplifting to be among so many people who share our values.

Like any annual conference, it was a time for old friends and colleagues to reunite. I think this social aspect is what gives these meetings the ability to re-energize the participants and the movement. And really, at its heart, that’s what the Green House Project is – a movement.  The energy level was no doubt enhanced by the large number of caregivers (“shahbazim” in Green House parlance) in attendance. Given the elevated role of the shahbazim in the Green House model, we were not surprised to see so many caregivers there. Still, it was great to see!

It was reunion of sorts for both Corey and me, as well. While we have contact during the year via emails and text, it was such a treat to spend a little time with my co-contributor and friend. While I’ve always admired her talent and commitment, I have to say that in person, her energy and wit are downright contagious. It was especially nice since I got to meet Corey’s friend, Dave, and they got to meet my wife, Jenny, and daughter, Jamie.

(l to r) Jenny, Corey, Jamie, Dave, Bob

Our talk, as you might expect, centered on the significance of the caregiver-resident relationship. While we used selected posts already published on the blog, we added some things to help apply our material to the Green House Model. It wasn’t that difficult really, so much of what we write on CNA Edge has to do with what the Green House calls “deep knowing relationships.” I think it went pretty well.

Like the Green House people, our “blogging batteries” have been recharged by the experience. We are really excited about the coming year and what it may bring.

A Shared Experience

 

Bob Goddard

It’s not uncommon for caregivers to say they were drawn to the field or that they were “born to do this work.” Others will tell you that life circumstances brought them to the job, but after some time as a caregiver they began to regard it as a calling. Probably both are true in different degrees in different people. But either way, I think the experience of caregiving incites something within our psyche that might otherwise remain dormant. It can change us.

The notion is supported by science. Psychologist Daniel Goleman, the author of Social Intelligence: the New Science of Human Relationships, tells us that person to person interactions literally shapes the human brain. The more important the relationship, the more profound the effect of those interactions upon the brain. When we help someone we care about, there is a psychoactive reaction in our brains that also connects with the circuitry that makes us feel good. We are biologically wired to learn to love and each experience expands our capacity for kindness and compassion.  Dr. Goleman says that the brain area that becomes stronger in this activity is the same area as a parent’s love for a child. We often hear caregivers talk about residents being like family members. This may be one reason why.

I’ve experienced this in my own life. Late last summer, following a speaking engagement at the Pioneer Network annual conference, I was ready was to devote myself full time to promoting this blog and our message. However, two months earlier, my granddaughter, Claire had been diagnosed with Agenesis of the Corpus Callosum (ACC), meaning that she had been born without the part of her brain that connects the two hemispheres. ACC is a developmental disorder that does not have a cure and treatment involves a lot of early intervention.  Soon after I got home from the conference, circumstances related to Claire’s treatment and care resulted in me becoming her primary caregiver during the day. I wasn’t planning on taking on this responsibility and I knew it would interfere with my work, but I couldn’t turn my back on my granddaughter when she needed me.

While I was initially motivated by a sense of family obligation, I soon realized that not only did I very much enjoyed my time with Claire, I found the experience quite fulfilling. I discovered that many of the skills and attitudes I developed in my years as a caregiver in LTC were applicable and I quickly became comfortable with this new responsibility. Soon I began working with the in-home therapists from the Early On program and learned about ways we could actively address the developmental challenges presented by Claire’s ACC. I knew that Claire will always have her struggles, but I was encouraged by the idea that we could do things here and now that would make a significant impact later in her life.

It makes sense to me that this transformation from a sense of obligation to experiencing emotional fulfillment to a desire to give more has something to do with Dr. Goleman’s psychoactive reaction. While there is little doubt that this process is enhanced by the expected grandparental bonding, it is quite possible that my daily interactions with Claire conditions my psyche in the same way an exercise regimen conditions the human body.

I believe there are certain universal truths that apply to any form of caregiving, whether it’s practiced within a family, within a facility, or in some other setting. And the first of these truths is that the relationship between the caregiver and care recipient can be a mutually beneficial experience. Under the right conditions, it’s an experience that has the power to change the lives of both parties.

Beneath the Roles We Play


Alice
Lucinda. To some, she is the manager at the super market on my corner. To others, she is the cashier, if they notice her at all. To me, she is a person with whom I interact with on a regular basis. She is a mother. She is a woman who worked from the bottom up and isn’t afraid or above hopping on a register when the store is short staffed. She is someone who managed to dig deep and find a genuine smile despite the fact that she had to show up to work after leaving the funeral of a loved one. I know this because I noticed the tracks of the tears that escaped her make up and I asked her about it. She knows my name and I know hers.
We interact with thousands of people in our lifetime. How often do we take a second to acknowledge their humanity outside of the limited role that they play in our lives? Do we see the person first or the service we expect them to provide for us,paid or otherwise?
My years as a caregiver have honed my ability to see a person beneath whatever descriptor they may hold. Quality of life is not improved by seeing a resident’s disorder before seeing them as a person. By knowing their individual personalities and preferences, I am able to provide better care and remind them that they are deeply valued as people. A person who feels worthwhile is less likely to be combative and angry. A person who knows you are a friend is more willing to trust, to be open about how they feel and less likely to feel alone and afraid. No one, myself included, wants to be seen solely as one thing. It is true on the job and it is true in the world.
Civility is slowly dying because our circles of empathy are shrinking. People view life through this filter of self. How do you and your actions affect me? We are all guilty of it. Just because I am aware of this doesn’t mean I don’t fall into that trap; that age old opera of ME ME ME ME ME when the reality is most of the time it’s not about me at all.
My work reminds me of that in thousands of ways, big and small. Those in my care manage to maintain their dignity through challenges that I can’t imagine facing. Even my most difficult and moody folks maintain the ability to occasionally laugh through constant pain. They help one another through the heartbreakingly tough days. Even those that don’t get along show each other support and notice when someone is missing from the hall. Somehow, through all of their troubles, most of them manage to smile at us and say thank you. It is impossible for me not to be humbled by that; to not strive to be just a little bit better every day at living well among other people.
We lost a resident this week. Sometimes it seems like I always see it coming but I never see it coming. I know the inevitable for the demographic with whom I work, but for me it’s always about their life. I never feel quite prepared for their death. This fellow left an impression that will stay with me for the rest of my life. A few weeks ago, I was working on his hall and saw his light on during my 2:00 AM hall check. Curious, I knocked on his door.
“Come in!”, he answered with more enthusiasm than I had at that hour. He was sitting in his recliner, listening to a book on tape as he carefully cut out a rectangle from the bottom of a square plastic cross stitch board. He had quite a stack of them piled on the side table beside him. This was no small feat as he was as close to legally blind as one could get. He explained to me that they could help the vision impaired to sign documents. Just line up the cut out rectangle above the space on which they need to sign and use the plastic as a guide for the pen. Voila! No more shaky, sloppy signatures. He asked me to hand them out to anyone I knew with poor eyesight. He went on to say that he was in a program that offered free audio books to anyone who no longer had the ability to read if I knew anyone who would be interested. I was thunderstruck with his courage. He didn’t even know he was brave and I knew instinctively that if I pointed it out, it would only make him feel uncomfortable. This was just who he was. To comment upon it as if it was an isolated event would cheapen it somehow. Still, I thought about it a lot for the next week. Here was a man who by all rights had every reason to feel sorry for himself. No one would blame him and yet there he was using his mind, creativity, compassion and his own personal struggles to make the lives of others better in a way that no one else could. It was nothing short of amazing and the fact that I was able to witness this empathy and gutsy perserverance in action was a gift that I will never take for granted. The very least I can do is get to know Lucinda; to do my best to see people beyond what roles they play in my life and what they do to me or for me. It is yet another reminder that the lessons are there. They are always there. I learn them when I become willing to see.

A Not so Obvious Picture at the Grand Rapids Home for Veterans

Bob Goddard

In early August, a disturbing news story broke about the Grand Rapids Home for Veterans, my old workplace.  After an investigation by the State of Michigan’s Attorney General’s office, eleven former employees – all direct care workers – were charged with falsifying medical records. The caregivers charted that they had checked on members (the Veterans Home refers to the residents living there as members) while surveillance video shows that these checks were not done. In Michigan, falsifying medical records by a health care provider is a felony, punishable by up to four years in prison and a fine of up to $5000.

The investigation followed a scathing February 2016 report by the Michigan Auditor General. According to that report, the home failed to properly investigate allegations of abuse and neglect, took too long to fill prescriptions and operated with inadequate staffing levels. Both the Attorney General’s investigation and the audit came almost three years after the State privatized the entire direct care workforce at the home, thus replacing a dedicated, stable direct care workforce with contract workers from a demonstrably unreliable agency, J2S.

The eleven workers charged by Attorney General’s office were employed by J2S. That company was replaced by two other contract agencies last year after J2S repeatedly fell short of adequately staffing the facility.

As we have come to expect in media coverage of anything related to long term care, the local media treatment of this story displayed a superficial understanding of how a long term care facility operates and relied on sensational wording to make the story more compelling. In the process, the reporting presented a misleading picture of how caregivers go about their work. While reporters expressed outrage over the quality of care at the home, they seemed clueless regarding what it takes to make good care happen. I think it would be useful to correct this and offer a different perspective.

In one report following the announcement of the felony charges against the caregivers, a local TV reporter assured viewers that the Attorney General’s investigation “paints a pretty obvious picture of the situation” and concluded that bringing the charges does two things: “it holds people accountable for what they did,” and second, “I can guarantee you tonight at the home for veterans they’re going to be doing their member checks.”

The assumption in that last statement is that fear is a necessary and effective motivator in providing good care. This is a common fallacy among observers unfamiliar with the nature and practice of caregiving. You cannot get genuine compassion and caring from fear.

Yes, as our visibly self-satisfied watchdog reporter suggested, I’m guessing “those member checks” were indeed “being done tonight,” but as I will explain below, that form of diligence has little do with the actual quality of care at the home.

The media reports and statements from the Attorney General gave the impression that these hourly checks were at the heart of what caregivers do. They are not. In fact, the hourly checks are superimposed over normal care routines. In a typical institutional setting, each caregiver is assigned a group, usually ten or more residents depending on the shift, unit and facility, and is charged with completing a whole series tasks including assisting with the residents’ personal hygiene, bathing, grooming, dressing, toileting, bowel care, skin care, turning positioning, transferring, ambulating, transport, serving meals and feeding patients, offering fresh water and snacks, take vital signs, make beds, keep the residents’ room clean, answer calls lights and respond to requests, record intake and output information, observe and report changes in residents’ physical and mental condition. And of course, document these activities via flowsheets and other similar forms. The location sheet is one of these forms.

It’s important to understand that given the direct care staffing levels in a typical long term care facility, and this certainly includes the Grand Rapids Home for Veterans, assigned caregiver workloads are rarely possible to complete – not to the standards set forth by regulators, facility policy, and customary nursing practices, let alone family and public expectations.  This means caregivers are constantly engaged in a form of care triage, made necessary because no one above them in the Long Term Care hierarchy, including policy makers and legislators, seem able to provide the resources necessary to do the job according to standards. Either they lack adequate awareness of the problem or are simply not willing to make the hard choices. By default, this is left to the direct care worker.

Given the inadequacies of the system, the best a caregiver can do is to arrange these various tasks in some order that makes the most sense for everyone in the group, taking into account the unit’s mealtimes and other facility routines. While a good caregiver tries to plan ahead, working with human beings means that unexpected needs routinely arise and no can anticipate everything.  Each shift becomes a unique time puzzle that the caregiver must solve if the residents are going to receive the best care he or she can provide. But the puzzle is dynamic, the “pieces” change according to the immediate needs and expectations of residents, coworkers and management. The caregiver must continually adapt his or her time organization to ever changing circumstances and priorities. In essence, the caregiver spends the shift involved in perpetual problem solving with ethical implications.

At the Veteran’s Home, the check sheets are kept behind the nurses station while the majority of care is conducted in the members’ bedrooms and bathing areas. So, to properly document the checks consistently in a timely manner requires this absurdity: the already overwhelmed direct care worker must pause care and walk away from the members for whom she is providing care for the purpose of putting her initials on a sheet of paper that indicates she knows the location of the members she was just with. This may provide the facility with documentary evidence and meet an institutional need, but it does not necessarily address the needs of the members.

If we are truly concerned about the quality of care for our veterans, the real question is not whether or not the checks were properly documented, but what the caregivers were actually doing when they indicated they made the checks. Were they in the shower room with a member or making sure an unsteady member wasn’t tumbling off a commode or perhaps transporting a member to a therapy appointment? Were they in the middle of assisting a member with his meal or helping a coworker transfer a 350 pound man from his bed to his wheelchair? Were they responding to a member’s urgent request for help? Were they redirecting a confused member for the tenth time in the last five minutes? Were they assisting another caregiver who was trying to manage a combative member? Were they comforting a member who was experiencing some kind emotional turmoil? Were they on their way to nurses’ station to get the location checks clipboard when they noticed a call light? Were they with a sick member, maybe dealing with copious amounts of diarrhea or vomit? Were they cleaning up a spill that presented a fall hazard? Were they speaking with the family of a member regarding their loved ones’ care and status? Were they holding a dying member in their arms? Or perhaps they were engaged in a member’s post-mortem care.

I will leave it to the Attorney General and media reporters to decide to which of these activities caregivers ought to interrupt so that they might properly document the checks – and presumably stay out of prison.

Let’s be clear, if the workers were sitting behind the desk or off the unit or otherwise not engaged with the members when these checks were supposed to be made, then our sympathy and support for them evaporates. Not because they didn’t make the checks properly, but because they weren’t with the members and on task. Even in bad work environments, caregivers are ethically and morally obligated to the use the time and resources that they do have to do the best they can for the residents.

Of course, it could be argued that the hourly checks provide a more systematic way of accounting for the members’ location and condition. Regular checks ensure that no one gets forgotten.  It seems obvious, right?

However, when you start to look at how caregivers actually gather information and keep tabs on the members in their group, the hourly checks take secondary importance. Caregivers are routinely provided with a “cheat sheet,” a one or two page list of all the members in their assigned group. The cheat sheet includes basic care information for each member. The caregivers carry these sheets with them and will refer to them throughout the shift. Even caregivers who are familiar with the members in their group will often use the cheat sheet as an aid to help organize their time and, of course, to help make sure no one is forgotten.

Given the real needs of the members, the fact that the checks are hourly is completely arbitrary. The reality is that some members don’t need to be checked that often and some leave the grounds for long periods – as is their right, it’s a home not a prison. Other members may need to be checked even more frequently depending on their particular physical and mental status.  A lot can happen in 59 minutes and the hourly checks can no way guarantee the safety and well-being of all members. The best way to keep members safe and their immediate needs met is to have well informed, well supported, on-task caregivers. And by well-informed, we mean caregivers who are thoroughly familiar with the members – not just with their current medical status, but who they are as individuals, their daily needs, preferences, and habits.

By threatening caregivers with prison sentences and the like, we can make them jump through hoops and give the appearance that good care is being done, but we should wonder what is actually being missed while they’re putting on this show for us. As our watchdog reporter implied, fear will elicit a sure response. But with fear, the issue becomes not about the real quality of your work and how those in your care are experiencing it, it’s about how you think it’s being perceived by those who can punish you. Under siege, our actions are informed not by our sense of right and wrong nor even by common sense, but by the assessments and attitudes of those who are judging us. When those assessments and attitudes are based on faulty perceptions – which is often the case in long term care and certainly the case here – our priorities become skewed and we add yet another obstacle to good care.

Fear won’t take caregivers into the places where genuine compassion and caring will go. As a motivator, it’s a weak and insufficient substitute for the truly powerful motivations that result in the best care possible. On the other side of those closed doors and privacy curtains where caregivers engage members and actual care takes place, you really want people who are inspired by the better angels of their nature.

The quality of care in any long term care facility is directly tied to the facility’s investment in the caregivers who provide it. Paying direct care workers good wages with decent benefits not only helps attract and retain workers, but it also gives them the means to adequately provide for themselves and their families. Many caregivers have no choice but to work a lot of overtime or find second jobs just to make ends meet. The work itself is physically and emotionally demanding, and when you add the stress of double shifts and long hours, the result is a caregiver workforce perpetually on the edge burnout. You can’t get the best possible care on a consistent basis from workers who are physically exhausted and emotionally drained.

It should be no mystery why J2S had such difficulty staffing the place and why even now one of the current contract agencies continues to have problems. The shortage of caregivers has become a nation-wide crisis and annual turnover rates for direct care workers typically run between fifty and sixty percent. Prior to the State’s privatization of the direct care workers, the Grand Rapids Home for Veterans was immune to this crisis.

The cost of losing that stable direct care workforce cannot be overestimated. Caregivers who are unfamiliar with the members in their care groups cannot possibly provide the same level of care as those who have had long standing relationships. But we continue to routinely throw these workers into chaotic situations and expect them to perform a high level. Usually they feel fortunate just to get through the shift with no major disasters. Or investigations.

While a sense of duty and a good work ethic are necessary in providing adequate care, there is no substitute for the personal relationship that develops between the caregiver and resident. This bond is the single most powerful motivator in providing excellent care. In environments where these relationships are encouraged to develop and flourish, workers become more caregivers, they become advocates.

If the caregiver has a moral obligation to do the best for his or her residents despite difficult circumstances, then those above us in the hierarchy and those on the outside who seek to influence the activity of caregivers have an equally compelling moral obligation to understand the consequences of that influence. This requires a basic awareness of the real challenges faced by caregivers and insight into what really motivates them. From what I’ve seen, both the Attorney General and the local watchdog reporters have failed to demonstrate that awareness and insight.

  

Business as Usual


Alice
Business as usual. She died. No one saw it coming and it’s business as usual. And I get it. Of course I do. We work with the most vulnerable of people, most of whom are at the very end of the long race that humanity is running. Many of whom have outlasted all of their loved ones. Our job is walking with those people, hand in hand, to the end. That’s how I see it. We care for them, preserve their dignity, protect their humanity and calm their fears as the sun goes down on the incredible day that has been their life. I tell them in all the ways that I know how that the sunset is always when the light is the most beautiful and that their colors will be forever painted on my heart.
She was here when I ended my last shift and she’s gone when I came in for this shift; gone in an instant. It’s how I would like to go if given a choice; in an instant after a full long life. Still, the shock rattles my mind as I absorb the news. Loss is part of the job and there isn’t always a warning. And I know it’s business as usual because we have others in our care but can we pause?! Can I have a minute to adjust to this reality before I have to hear who didn’t do an adequate job on the hall this weekend or which other resident was disruptive?! Can I have a minute to remember my favorite moments with her before dismissing her death as just part of the gig?!
Can I have a minute before I hear, “Alice, you like an adventure, right? Want to help give a shower to an “impossible” resident”? Can I have a minute before I hear the dread in another person’s voice that a resident living with mental illness is coming back on my hall tomorrow? You say oh God. I say thank God.
I will double my hall checks tonight just to be on the safe side. I will spend extra time with my night owls. I will gladly give that shower to the impossible resident. I will smile at the many times the resident we lost made me laugh. I will appreciate others more and be deeply grateful for my own life. It’s business as usual. That doesn’t mean I ignore loss. It means I use it to enrich me as a caregiver; as a human being. It doesn’t mean I dismiss death. It means I celebrate life.