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 get so tired sometimes. I want to shrink from this world that seems to subsist and thrive on anger, panic and fear. Has it always been this way and I’ve just been oblivious to the fever of it or is this some new beast fueled by everyone’s absolute certainty that they are right? The days of context and nuance seem to be gone for the moment and shades of grey no longer exist. Black or white. Right or wrong. Bottom line thinking for an end results world.
I am never very certain about very much. In my experience, that way lies madness. I have certain ethical guidelines and passions that anchor me and I try to keep my mind open to learning from others who have different points of view. Work has been vital for my sanity in this social climate where people seem to be filling some inner need by yelling at one another and coming up with shallow, half-hearted and blame-filled excuses to the deep and complex problems that our society is facing. I guess that’s easier and less satisfying than putting aside anger and wounded egos in order to come together and effectively work toward common solutions. We currently live in a world where everyone wants to be the boss but no one wants to lead.
Those of us who work in Long Term Care are no strangers to the damage such a management style causes. It’s flat out ineffective. The best supervisors are the ones who roll up their sleeves regardless of who is watching. If I only see you when state is in the building, I’m less likely to trust you around those in my care. I have more respect for an LPN who will help me calm a resident who is lashing out in fear than a career administrator with degrees on the wall who’s first solution is Ativan because she’s about to give a tour to a potential new client and wants the hall orderly. That is the difference between a leader and a boss. Because I find my own personal standards of quality care to be much higher than what is expected of us, I have no need for a boss. I learn from leaders, however, and that makes them as invaluable as they are rare.
I decided to step back from Facebook for a little while. Every other status I read is angry. Every article posted has completely different facts cherry picked to enrage or validate you depending on what side of the given position you take. They all agree that everything is the absolute worst. The only difference is who they believe is to blame…and all of that is crap. Cynical, self serving crap wrapped in a bow made of ego.
But, Alice! Aren’t you concerned about the state of affairs?! Of course I am, possibly shocked and appalled reader, but here’s the thing…this is NOWHERE NEAR as bad as it’s been. In my years in this field I’ve cared for people of color who actually lived through the civil rights era. I’ve cared for a Vietnam vet who lost his sight, and a WWII vet who lost his leg. I’ve cared for people who were children during the Great Depression and for people who lived through the Cold War. I’ve had women in my care who lived in a time when it was more socially acceptable to be an abused wife than a divorced woman. Collectively, we survived all of that. As a society, we have faced our worst behaviors and bit by bit we have grown from them; progressed step by painful step forward. I refuse to believe that this…this angry, entitled, backwards thinking reality we are all actively creating is going to stick. I have more faith in us than that.
Individuals are all more than one thing. Are my residents simply their Alzheimer’s disease? Or prostate cancer? Or schizophrenia? Are they not bigger than that? Am I not more than my political affiliation? Is it not beautiful that we are all people who bleed the same? It is a combination of different ideas and individual experiences that gives life it’s richness. When did we decide that we should only surround ourselves with those who look, think, believe and behave exactly like us? How can we possibly come up with and solutions to vastly complex issues without the benefit of diverse ideas and the freedom to dissent without fear?
So I would like to thank every single person who has ever been in my care for teaching me gratitude and perspective. Life is too short to waste on fear and anger over troubles that we create or stir up in our minds before they even occur. I would also like to thank you for living through adversity and sharing your stories so I know what courage looks like. I would like to thank my fellow caregivers who adapt to the reality on the floor rather than the one we are told to expect. We come together to make the most of what is rather than complain about what should be…ok to be fair sometimes we do both but for the most part we are about action. It is a diverse world on the floor, full of people from all walks of life with a variety of skills and reasons for being in this field. Despite what some may think, we cannot all be painted with one brush and for that I am incredibly thankful. This field has honed a strength in me that would not have developed otherwise and directed a passion for purpose toward a path where it would be put to good use. I get tired, but I’m one of the lucky ones. I get these reminders at least five nights a week. I can step back from the combative and fear filled world online and reorient myself to the world in which I live.
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.
One of the primary concerns in Claire’s early development is her tendency to rely on arching her back as a means of movement. Like any other infant, she has a natural impulse to move her body, but because of her ACC she is unable to easily perform more complex forms of movement that require coordinating her hips, legs, and arms, such as crawling or sitting up by herself. Her dependence on arching inhibits her gaining the strength, flexibility, and confidence required for these more refined movements. We must condition her not to pop into that backward extension.
One of the key elements in helping Claire overcome her “arch addiction” is posture training. The mantra here is 90-90-90: hips at 90 degrees, knees at 90 degrees, heels at 90 degrees. For this, we have a small arsenal of chairs at our disposal.
The most useful of the bunch is the corner chair:
Not only does the corner chair help Claire maintain the 90-90-90, it also provides support on each side. A tray fits over her lap, allowing her to manipulate and play with objects and enables us to engage with her without the necessity of us physically supporting her. The corner chair is comfortable and secure enough that she can spend up to an hour or more at time in it. Since Claire spends most of her time at home, we keep the corner chair at Hiliary’s house.
At our house we use the Lechy chair. This essentially works the same as the corner chair, but without the side supports. We have to make several modifications to make it work for Claire: we use a book to bring her small body forward in the chair so that her knees are at 90, an empty box for a platform to rest her feet, and a scarf loosely secured around her ankles to help keep her feet at or near the all-important 90. As with the corner chair, there is a tray for activities.
I also use what I simply call the “red chair.” Claire is secured in the red chair by vertical straps and a pommel. The floor serves as a platform for her feet. Unlike the corner chair and Lechy chair, I have to stay within arm’s reach of Claire while she’s in the red chair because she is quite capable of rocking it and there is a real potential for a pretty severe face plant. One advantage of the red chair is that there is zero pressure on her abdomen, so I actually prefer to use it after she eats. This is especially important given Claire’s problem with acid re-flux.
While the chairs serve a critical function, they are only a part of the program. The real strengthening comes from floor play, and from the habits and practices of her caregivers: how we carry her, hold her, and pick her up. I’ll talk about these in upcoming posts.
At some point, Claire will learn to sit up by herself and crawl and eventually walk. But the quality of these accomplishments will depend in large part on how well we can help strengthen and redirect her body now. And since it all works together, this will have a major impact on her cognitive, social and psychological development as well.
I’m sure in the light of day, this facility is charming. I can’t quite remember the impression I had of the building in which I work during my two day orientation, which took place in the bright sunshiney hours. The relief and excitement I felt about the new job opportunity dimmed my keen powers of observation; the same Sherlock Holmes level of visual acuity that prevents me from getting into the wrong car and trying to start it more than twice a week. So I can’t say for certain that in daylight it’s a charming, lovely place. I can only assume. At night, however, there is no more fitting a descriptor than “creeptastic”.
Let’s start with the huge portrait of an incredibly stern looking man above the fireplace. His eyes seem to follow you everywhere and then there are the clown pictures and blood red carpets and creaks in the floor and the overabundance of wind chimes…all of which may add whimsy and class to the joint in the day, but at night? No. It feels like the environment of a stereotypical horror movie that would be panned for being too predictable.
I say this with great affection. It’s exactly the sort of strange and surreal experience that I’ve come to appreciate in my life. It’s anything but ordinary but after this weeks stretch on memory care, I realized that buildings are not the only things haunted at night and there is only so much I can do to chase away another person’s inner demons.
It makes sense, really. When does my mind spin the most, picking apart the day and chasing my own imaginary fears? When is my own anxiety at its peak if I had a rough day? Right before bed. And if I can’t sleep? Forget about it. My mind runs wild. Why would I expect any different from those in my care?
At night in the quiet, dimly lit halls of the memory care unit, my night owls pace. Sometimes they are just confused about the time. That is easy to redirect usually. I explain to them my days get topsy turvey too, we share a chuckle, I tuck them in and off to sleep they go. I can do that all night without losing patience. No, it’s the other situations that get to me.
I call them the “night dreads”. When one of my folks has a rough night, it’s very different than what I experienced when I worked the day shifts. Sure, there was any number of challenging behaviors and there was less time to redirect in the day but it was different. Maybe because there were more people around and the extra stimulation kept them more alert. They seemed less…haunted. Nightmares can be hard to shake off. A vivid enough one can muddy my perspective for awhile but when I’m awake, I’m awake. This is not how it is for my residents. A nightmare will shake them to their core. They don’t always understand the difference between their dreams and waking life. Often they will wander up and down the halls, looking for lost loved ones. Where is my mother? Where is my love?…letting them know they aren’t alone and are safe seems to help. I put them back to bed and sit with them for awhile. Sometimes I sing quietly. I make certain that the bathroom light is on.
More often than not, I will be repeating that throughout the night but each episode seems to be just a little easier. Each time the resident seems a little less scared. Usually, right as the sun is coming up, they are able to rest more deeply. Those nights are the hardest; the ones when I can’t chase away the ghosts for them, I can only put them at bay. They leave me exhausted, sad and a little scared at the idea of anyone having to live through the night dreads and little frustrated that the best I can do is walk with them through it.
Thankfully, tonight was free of that. Tonight there was mostly laughter. I have a resident who without fail leaves his room wearing the oddest combinations of clothing: long johns with a back brace and a red ladies hat with a purple flower (no telling where he picked that one up) was today’s fashion choice.
“Is is time for coffee?” I managed to keep a straight face for five seconds when I saw his get up.
“No, buddy. It’s 3:00 in the morning.”
“Ok. I’m going back to bed then. Don’t forget me in the morning!”, he called over his shoulder.
“Never, my friend.”, I assured him. You know what? Today, I’m going to make a conscious effort to see how this place looks in the sun. Most things are clearer in the light of day.
In all my years in this field I have never had a person in my care who did not respond better when approached consistently with kindness. Never, not one single time. My most resistant residents have been more willing to be an active participant in their own care when they didn’t feel invisible. My most confused residents had less anxiety clouding their minds when I have been able to coax a laugh from them. Kindness doesn’t cost a thing. It takes no more time to be kind than it does to be resentful and impatient and it takes far less energy.
“You’re going to spoil them”.
“Now they’re going to expect that from everyone.”
“Don’t get that one going. She’ll talk your ear off if you let her”…To which I politely smile and go about doing my job exactly as I see fit. Treating my folks the way I’d want to be treated is not “spoiling” them. It’s being good at my job. I give my best effort regardless of what it causes other people to expect. Quite frankly, I don’t care if that raises the bar or not. My work ethic does not include doing less for those in my care so they don’t expect it from other workers. And I don’t mind having my ear talked off. Why should my night owls feel lonely? If they want to talk and I’m not in the middle of a task, I have no problem listening.
The idea that the people in our care are tasks to be minimized and tackled begrudgingly has to be changed. Not every caregiver treats the job with such apathy; not even most, but there are more than enough that do. Rightly or wrongly, the majority of hard working and dedicated caregivers are stigmatized by the behavior of those who are not right for this field.
We are the frontline of Long Term Care. We are the faces most seen. When something goes wrong, we are the easiest to blame. People see the bad behavior of the caregiver and not the broken system that spawned it.
There is grace, value and purpose in this field. We are needed and trusted by those in our care. There is something sacred about that. If the system has beaten you down to the point of resenting those in your care and basic human kindness is too much to ask, then maybe it’s time to consider another field. As workers we don’t like to feel disposable or invisible so why would we treat our residents as little more than a burden? We can do better. We HAVE to do better…any lasting change that matters will begin with those of us who work the floors. We are the closest to the residents and we have a deeper understanding of the world through their eyes. All improvement begins from within, though, and before we change the system we have to change our attitude toward those who live within it.