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.
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.
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.
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.
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.
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.
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. 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.
Assisted living. It brings to mind a calm and safe environment where people who need minimal assistance with the activities of daily living can reside and flourish. It’s hardly work at all. They don’t even have lifts (in theory, anyway) and because of this, the pay is less. A calm oasis, complete with shuffle board…just like in the movie Cocoon, if you will pardon the dated reference. In my experience, the reality could not be farther than that mental image.
The state in which I live has cut so much funding for mental health that there are no longer any long term treatment options available for those living with severe mental health issues. We have a short term behavioral health center that is sort of a catch-all crisis center for a variety of disorders. Three to ten days;just enough time to get a brief taste of stability before they send them on there way until the next crisis. Those of us who bring in support groups from the outside often see the same clients come in and out again and again. Fairly often, people I would see when I was volunteering at the short-term behavioral health center ended up in the assisted living facilities where I worked.
They don’t belong here. It’s not fair to the other residents. How am I supposed to take care of her. She screamed all night long. This isn’t what assisted living is supposed to be. These are the mumbling grumblings I would hear the most. I learned early on that there is no point wasting time in the land of “supposed to be”. That is the dubious luxury of the legislators who make regulations that make no sense for a world they do not understand. Poorly enforced useless regulations at that. A facility will get dinged if a caregiver accidentally wears gloves in the hall but call bells that haven’t functioned correctly in over a year are just fine…but that’s a post for another day. My point is that as a caregiver, one of the first lessons I learned is to divorce myself from all expectations. There are no supposed to be’s.
In my experience, assisted living is sixty percent mental health, twenty percent total care and twenty percent people who need moderate assistance. Or some combination of the three. I’m not a numbers person, but I would say that’s a fairly accurate assessment. On one hall, I have had a resident who was living with the damage of long term substance abuse, another who heard voices, one in the early stages of dementia, one who spoke no English, one who was legally blind and a young man who suffered permanent damage from a catastrophic car accident. Every single case required me to use a different set of skills that I learned from the floor in order to be of maximum assistance with their activities of daily living.
Think about that. Doctors and nurses have specialities; classes and separate skill sets that enable them to work in a focused area of care. For caregivers working in assisted living, our specialty is “handling it” And I love it. It keeps my job endlessly challenging, but it is not everyone’s cup of tea. If you aren’t open minded and able to adapt to the reality of the situation rather than the expectation of what it should be it’s going to be a rough road to hoe.
My question to all who struggle with what assisted living is verses what it should be is what is the alternative? In my state, at least, there isn’t another viable option readily available. Is it ideal? No. But at least my residents living with severe mental illness have a place to live and receive their medications for both physical and mental health as prescribed. At least they have food and companionship. At least they are safe.
Some of my residents living with severe psychological challenges stay in these facilities for years and some go back and forth between the streets, the short term behavior health center, and assisted living places. I have had past residents who have left the facilities where I worked only to turn up years later at the behavioral center where I volunteer.
Last winter one of my residents living with a mental disorder died in the most tragic way imaginable. I hadn’t seen him in awhile. He was so young. Just a kid really. He slipped through every imaginable crack in the system. He left the facility where I was working at the time and later turned up in the group at the behavioral health center. That was the last time I saw him alive. I speak for every caregiver who ever worked with him when I say that there isn’t any length we wouldn’t have gone to in order to prevent his death. It’s just heartbreaking to think about. So while it may not be an ideal option and the training caregivers receive in psychological disorders is sorely lacking, those of us who adapt well to the strange and interesting world of assisted living facilities will be the first to say it certainly beats no option at all.
I do not understand why anyone would continue in this career if they don’t have a love for what they do. It’s not the money. It certainly isn’t the respect. I cannot tell you how many times I’ve heard a nurse offhandedly tell a caregiver that being a nurse is hard, that there are so many responsibilities; The unintentional implication being that we don’t know how good we have it. And I don’t doubt that the nursing field has challenges and rewards that I haven’t experienced as a caregiver but unless a nurse has experience as a CNA in a Long Term Care facility, the reverse is true as well.
I have developed a set of ideals, skills and standards that I consider both invaluable to being a quality caregiver and highly overlooked by the system at large. None of these skills include excellent hospital corners or perfectly folded laundry, both skills with which I could use improvement. It’s not that I consider those parts of the job without value; it’s just the least important of the skills we need to provide quality care and often the first noticed when the hall is inspected by supervisors.
“Did you make the bed in room 237?”, demands an imaginary boss I created to express this point.
“No not yet. Agnes is freaking out because she thinks Ida stole her dog and she’s refusing to let anyone but me in her room…let me just…” make-believe me replied.
“Are you kidding me?! The OWNER is on his way and he wants this hall to LOOK perfect. Leave her. She’ll be fine. Go make sure all the beds are made.”
Now, I made that scenario up. I’ve never actually had anyone named Agnes or Ida in my care. But I have had countless experiences with some version of the above situation; enough for me to know that the priorities in these facilities are WAY off the mark.
The residents come first. It is up to us as caregivers to make certain that is not just lip service. And let’s be really honest here, the top of the hierarchy in these facilities view it as a business. The amount of money it costs a month for an apartment here is mind boggling. I work in a really nice place that almost no one could afford. That is the sad truth. I’m not implying that these corporations shouldn’t take in a profit and I’m not saying that the one in which I work isn’t a decent place. What I am saying is that in the ten years I’ve worked in this field, with varying degrees of severity, the issues in each facility have always been the same; have always branched from the same root. Everyone pays attention to playing their own instrument without considering what it takes to create a symphony. So we end up with a cacophony of noise instead of harmonious music.
I’ve learned through the years that I personally understand the value and necessity in what we do better than the state surveyors. The seem to have a very limited scope of what is deemed important. So I don’t limit myself to their standards, many of which seem silly and misplaced and others that do not reach nearly far enough. It’s as if they have one fixed idea of who lives in these facilities and no ability to get to know the vast array of individuals living with a myriad of challenges, both physical and mental. No interest or time to get to know the residents or those of us who care for them. So I don’t flinch when they arrive to dot some “I”s and cross some “T”‘s.
I am in this gig because I SEE people. There has been much I’ve had to learn and skills that I’ve had to improve upon. My ability to see beyond an age or disability to the person beneath is not one of them. For whatever reason, that part of the job is innate for me. I love seeing bravery in action. I love the stories. I love going to sleep knowing I make a tangible difference in the life of others. I love that I’m never bored. I love that there will always be something new to learn. With people, there always is. These are my whys. Because I know them, have defined them for myself no one can devalue my job. I am not confused why I’m in this field and that has made all the difference. It’s prevented frustration from turning to resentment. It’s inspired me to continue to try to improve the system. It’s opened the door to be both teacher and student and has saved me from becoming jaded from burn out. I defined my career. I didn’t allow someone with little knowledge of it to do it for me simply because they had a degree on the wall. So I would like to know your “why’s” readers. Whatever role you play in the long term care system, what motivates you? What keeps you coming back? And how do you think we can work together to fix what’s broken?
I could hear her shuffling down the hall again. She was having a restless night, up every two hours hoping that it was morning. She slept too much during the day and it’s thrown her for a loop. Mentally, she was in that grey in-between place. She is cognizant of the fact that her thoughts are becoming murkier. She is aware that chunks of time slip by unnoticed and she is sharp enough to realize that she is not as sharp as she once was. I can’t imagine anything scarier and yet she handles it with both wit and rueful acceptance. At least I’m not ready for the hole. At least I’m not locked in that cage you call a unit.
Truth be told, I was grateful for the interruption. It was an unusually quiet night and I was on one of the easier halls. At first, I was grateful for the break, having worked several nights straight on memory care. I knocked out the laundry and cleaned the floor’s kitchen. I even threw in first shift’s laundry just to keep busy. I had the time. Soon I had done all there was to do other than hall checks every two hours. In between, I decided to catch up on the news. That was a bad idea. I stumbled into the comments section under the articles. That was an even worse idea.
The whole world is yelling at one another. Honestly, it didn’t matter the topic of the article or what side of the argument the yelling people were on because they all sounded exactly the same. I read the term “butt-hurt” twenty-three times in the comment section. I COUNTED it! Do you know what that means (other than the fact that whatever drive that motivated me to count it in the first place may be somewhat warped)? It means that twenty-three fully functioning adults from both sides of a debate felt that a perfectly appropriate way to express an idea or debate a thought was to call another person butt-hurt. Or snowflake. Or fascist. Or stupid.
Suddenly I was hit with a wave of deep sadness. Because there is nothing I could do about all the anger, the racism, the dumbing down of our society to the point where name calling is the best we have to offer in terms of open discourse. I can’t convince a world of people thriving on panic and smugness that life isn’t anywhere near as terrifying as they think it is and we have faced much more difficult times as a society. Maybe it was the 3:00 AM blues. Maybe I was just tired but it put my head in a dark space.
Suddenly I was thinking about my residents from facilities in which I worked in the past who didn’t make it or were “evicted” when their funding ran out. I was thinking of people I knew who ended up in assisted living as a direct result of untreated addiction issues or undiagnosed mental health struggles. I was thinking of the client I had to walk away from in order to work here. Before I knew it I was entangled with a combination of genuine emotion mixed with misguided self-pity over how powerless I felt to do anything about any of it. When I was a kid playing make believe, I never imagined adulthood to be full of bullies anonymously screaming “butt-hurt” at each other as they angrily debated the presidency of the dude from the Apprentice. It just wasn’t a reality that I envisioned. I certainly didn’t think those in power would cut the funding for the most vulnerable. Would cut the regulations designed to protect them.
All of this was dancing an awful tango in my head when I heard the steady thump thump thump of her cane as she came down the hall. Relieved at the interruption to my traitorous mind, I jumped up to meet her. There she was, decked out in earrings, bangle bracelets glasses on her head and a velour track suit, the top of which she somehow managed to put on inside out and backwards. The laugh escaped me before I could stop it. Her face fell. She thought I was laughing at her.
“The damn top is tricky. It’s hard to get dressed in the dark.”, she said defensively. This. THIS I can do something about. As she continued to try to explain why she had a rough time putting her shirt on the right way, I quietly bent down and rolled up both legs of my scrubs. Her voice trailed off mid-excuse. Her eyes widened and a smile spread across her face as she stared at my ghostly legs. My left leg was clad in a striped knee sock pulled all the way up and covered in smiley faces. My right one had a black and white polka dot ankle sock. Her smile became a chortle that quickly grew into a belly laugh that filled me with joy for what I do and chased away the last of the cobwebs in my mind.
“Now THAT’S a damn shame!” She sputtered between laughs. I was howling right along with her. Whether it was luck or providence or procrastination of my own laundry that had my socks so completely mismatched, I don’t know. I only know that it saved that shift for both of us. It reminded her that she’s not alone and it reminded me that the little things over which I do have power are maybe not so little. You can’t put a price on a genuine laugh, after all. That is something and in that moment it made all the difference.