Tag Archives: nursing home

A Matter of Death and Life

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Yang

The subject of death comes up often in this line of work. On this blog, Alice and May have visited it on more than one occasion. They have shared how they experienced losing residents they’ve known and cared for, and how they cope with the deep sense of personal loss. These experiences and feelings are echoed every single day in the hallways of LTC facilities and on social media. Death and loss are realities that all caregivers have to deal with at some point. For some, it becomes too much to bear and they leave the field.

Death is also at the heart of the negative public perception of nursing homes. The term itself, nursing home, evokes images of forsaken and forgotten souls, a place where we “stick” people when they are no longer of any use and we don’t want to be bothered with what’s left of them. That even facilities that offer good care and where the residents seem content, are still essentially gilded human warehouses, nice places to go and wait for the inevitable. Abandon hope all ye who enter here.

Those of us who work in direct care know that the reality is not quite that dreary. While we can be the staunchest critics of the nursing home industry – because of what we know about the very real problems – we also know that these places are and can be so much more than just human warehouses. We know that not everyone who enters them is prepared to simply submit and waste away. That sometimes people who have experienced severe neglect on the outside can actually rally after admission. Good medical care, proper diet, therapy, and a sense of community and belonging, can go a long way in restoring a sense of wellbeing and hope. That yes, even here, life goes on.

While good care is essential, it does not address the deeper question of a meaningful existence. Here, in the final stages of life, where comfort is often regarded as the highest value and the will to live runs on sheer momentum, the question arises – and I’m going to be blunt – why bother? Why bother to go on when you no longer feel productive or useful? Why bother when you feel as though you’ve become nothing but a burden? Why bother when you’ve lost so much that you hold so dear? And the toughest question of all: why bother when the end result is going to be the same no matter what you do?

Good caregivers do all they can to address the “why bothers?” Through our awareness of our elders as individuals and by engaging them emotionally, we assure them that if nothing else, they still matter because they matter to us. We can’t give them back everything and we can’t reach everyone, but there are opportunities to make a real difference and we morally obligated to make the most of them.  

Still, there is that nagging reality always present in background, the sense of doom and meaninglessness associated with our mortality.

But we are not powerless. First, we have to reject the conventional view of aging: that the final stage of life is less meaningful than everything that comes before it. We need to embrace the idea that we can change, grow and develop right up to the end. And we must stop downgrading the intrinsic value of moments that are experienced during this stage of life. Even to the end, we can retain our capacity to be surprised or fascinated or enthralled, and to value the comic absurdity of life. And we can still lose ourselves in these moments and share them with those around us without reference to some ultimate meaning.

Second, we have to rebel against death itself. Not against its reality, but against its hold on us; against the idea that our fate to die must inform our actions and constrain how we experience life. We need not be held captive to the ego’s revulsion to nonexistence. By liberating ourselves from death’s grip on our being, we are giving ourselves permission to really live.

For our elders, it’s not enough that we tell them that life is still worth living.  Instead, as caregivers we must discover what that means to them, in the most specific, practical terms. We must facilitate and share with them, when we can, those things they find meaningful. Each time we do this, we are joining them in their rebellion against death and boldly answer the question “why bother?” And we celebrate with them one more victory in life.

We Still Have a Long Way to go

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Yang

In Being Mortal, Atul Gawande tells us: “A monumental transformation is occurring. In this country and across the globe, people increasingly have an alternative to withering in old age homes and dying in hospitals – and millions of them are seizing the opportunity. We’ve begun rejecting the institutional version of aging and death, but we’ve not yet established our new norm… With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices. We are going through a societal learning curve, one person at a time…”  (Page 193)

Sometimes a little historical perspective can be encouraging. The “societal learning curve” Atul Gawande alludes to is actually part of a larger learning process that has been going on for decades. This rejection of the institutional version of aging and death is simply the latest stage of an ongoing societal response to profound social, medical, and economic changes as they relate to issues of elder care. A brief outline of how we got to this stage might be useful.

Until the mid-20th Century, elder care was primarily a function of the extended family. Those who were unfortunate enough to have no family or who were abandoned by their family, were forced to live out their remaining days in what were known as “almshouses” or “poor houses.” These residential institutions were a kind of catch all, housing the frail, the infirmed, the insane, the developmentally disabled, or people who simply had nowhere else to live. They were universally underfunded, barely staffed, and had little public oversight. The living conditions were deplorable. Horror stories involving starvation, fatal neglect, exploitation, thievery, and outright torture were not uncommon.

With the restructuring of the social welfare system after WWII, the poor house became a thing of the past.  In the 1950’s the federal government established a lending program that enabled entrepreneurs to build for-profit institutions designed specifically for elder care. These institutions were the first of what we would now recognize as the modern nursing home.

The 20th century also brought a significant demographic shift. Due to medical advances, improved sanitation, and infection control and treatment, people were living longer. In 1900, life expectancy in the United States was under 50. By 1960 that shot up to age 73 for women and a little less for men. The trend continues today and within thirty years we will have as many people over eighty as there are under five.

At the same time, social and economic changes resulted in an increasing number of women entering the workforce. By 1960, the percentage of the female population in the labor force had doubled since the turn of the century. This trend would continue through the second half of the 20th Century. Since women traditionally bore the burden of the majority of caregiving duties, families increasingly relied on institutions for the care of the elderly and disabled. In the early part of the 20th Century, 60 percent of those over age 65 resided with a family member. By 1960, that figure dropped to 25 percent. The fledgling nursing home system was being overwhelmed.

To meet the demand, the federal government stepped in with major legislation, the most significant being the establishment of the Medicare and Medicaid programs in the mid-60’s. With this stable source of funding, the number of nursing homes exploded. From 1965 to 1973 the number of beds doubled.

Living conditions varied in these new homes and too often they were substandard.  Medicare and Medicaid specified they would only pay for care in facilities that met basic health and safety standards. However, policy makers knew that a good portion of these facilities could never hope to meet these standards and they feared there wouldn’t be enough homes to meet the demand. The result was a lenient regulatory posture allowing “substantial compliance.” That is, when it came to standards, “close enough” was good enough to keep you open.

During the 70’s and 80’s, the Long Term Care industry came under increasing public scrutiny. Congressional hearings citing conditions such as inadequate nutrition, dehydration, overdrugging, excessive use of physical restraints, failure to provide prescribed therapies and inattention to the psychosocial needs of nursing home residents, resulted in a public outcry for more strict enforcement of Medicare and Medicaid guidelines.  The passage of the Omnibus Budget Reconciliation Act of 1987 (OBRA) established new guidelines for the use of physical and chemical restraints, created a nursing home resident bill of rights, and mandated quality assurance standards, established a standard survey process and mandated training and educational requirements.

While OBRA ’87 resulted in tangible improvements in the life of nursing home residents, a substantial proportion of the nation’s nursing homes were still being cited for inadequate care. In particular, the industry continued to be plagued with staffing problems, especially in direct care. In 2001, CMS reported that more than 90 percent of facilities nationwide did not have sufficient staff to meet the residents’ needs or to prevent avoidable harm. Most caregivers working in LTC today would agree that this problem persists in 2016.

In the last three decades there has been a number of efforts to provide an alternative to traditional institutional elder care. In the 90’s assisted living facilities began to emerge. Originally, these were intended to eliminate the need for nursing homes altogether by offering a smorgasbord of services in a setting that gave residents maximum freedom and autonomy regardless of their physical limitations. However, today the assisted living facility is generally regarded as simply an intermediate stage between independent living and life in a nursing home. Meanwhile, the emergence of programs such as the Eden Alternative, the Green House Project, Hospice Care, PACE, and other community based services are indicative of an ongoing societal effort to redefine elder care.  

In less than seven decades, elder care has transformed from what was primarily a function of the extended family to a responsibility of the social welfare system.  As societal institutions go, seventy years is not that long.  If the 50’s style nursing homes could be considered the infancy of the modern Long Term Care system, then what we are experiencing now could rightly be thought of as its adolescence. If we are still grappling with problems of how to properly approach the issues of aging and elder care, it’s because we’re relatively new at it. And like a confused teenager with that “baby’s brain and old man’s heart,” we are still trying to find our way.

While we have to recognize the progress that has been made in Long Term Care, in terms of transforming the culture of aging and elder care in way that “preserves the fiber of a meaningful life,” we still have a long way to go. In fact, as Dr. Gawande’s “plodding novices,” we’re just getting started. I find that thought encouraging.

We Need More Caregivers

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Yang

Well, they’re at it again. Nursing home operators and advocates for quality nursing home care are bickering over nursing home regulations and how much regulation is enough. This time they’re facing off in Kentucky. The operators and their supporters claim the current regulatory environment in Kentucky invites “toxic litigation” and that the funds used in such settlements and other fines could be better used to improve care and reduce costs. The quality advocates and their supporters say that’s nonsense and that regulations and penalties are put in place to provide an incentive to put resident care above the bottom line.

This is an old battle. It’s been going on since the 60’s when Medicare and Medicaid came along and nursing home operators discovered how much money there was to be had in the LTC business. Long Term Care facilities were not as closely regulated as they are today and the resulting “hell hole” horror stories gave nursing homes a bad name. Then OBRA came along in the late 80’s and conditions seemed to have generally and gradually improved since.

While OBRA was landmark legislation, the above is an oversimplified version of events and it took much more than government oversight to put Long Term Care on the right path. It took – and still takes – many different people from many different directions to make Long Term Care work and evolve. And sometimes those people coming from different directions clash.

From a caregiver’s perspective, these two adversarial camps, the operators-administrators-managers and the regulators-advocates-surveyors, can be seen as one big group. As a group, they collectively create and enforce the standards and policies under which we work. However, by the time all of this gets to us, what they’ve come with often doesn’t make much sense.

Oh, the particulars are good. It always about making some improvement in our residents’ lives. No one is going to argue for bringing back vest restraints or argue against resident privacy rights. We all accept that regulatory oversight and the policies that result from it are both necessary and well-intentioned.

What doesn’t make sense from a caregiver’s perspective is that the additional duties created by these regulations and policies are rarely accompanied by a corresponding increase in direct care staffing levels. We are simply told to do more with what we have. When I started in 1977 my resident group included 12 residents on second shift and 10 on first. While some places have improved on this, that ratio is still pretty much the standard. And due to difficulties in keeping facilities properly staffed on a day to day basis, the reality is often worse.

Not too long ago, I conducted an informal Facebook poll of direct care workers regarding care plans. My question: “Do you feel that your workload is light enough to enable you to consistently meet the care plan goals of all the residents assigned to you?” The overwhelming response was “No,” often expressed forcefully – and sometimes, colorfully. Out of 303 caregivers, only four answered yes.

It reminds me of that classic definition of “a mess”: A mess is trying to fit ten pounds of manure into a five pound bag. When you simply pile on more work but fail to provide more direct care workers to do it, you’re going to have some kind of mess.

Dear Operators-Administrators-Managers-Regulators-Advocates-Surveyors and assorted LTC professionals: we simply cannot do what you ask with what you’ve given us. Believe us, we want to do everything you ask of us – and much, much more. Perhaps you could find a way to work together and help us out a bit here?

Why are CNAs so Poorly Paid?

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Yang

This week there has been a lot of talk in the media about the movement to raise the minimum wage to $15 an hour.  While most of the attention was focused on fast food workers, advocates for direct care workers took the opportunity to highlight the negative impact that poor wages have upon caregivers and their residents. In a Wednesday article for McKnight’s, Matt Yarnell, the Executive Vice President of SEIU Healthcare Pennsylvania, pointed out that nearly one in six of the state’s nursing home workers are paid so poorly that they are forced to seek public assistance through the Supplemental Nutritional Assistance Program, Medicaid or both.

Yarnell wrote “If we are serious about providing the highest quality care for our residents, then we have to back our rhetoric with action. It means we have to provide living wages to caregivers to cut down on turnover, to not force caregivers to work excessive overtime and double shifts. It is about not forcing workers to have to look to the state for public assistance to provide for their families.”

Why are direct care workers so poorly paid? A common argument points to the low educational requirements necessary to work as a caregiver. Often this point of view comes from within the Long Term Care community itself.

It’s true that the technical skills of a caregiver can be taught relatively quickly. Things like the principles of basic hygiene, taking vitals, infection control practices and proper body mechanics are pretty straightforward and don’t require a lot of advanced study. However, while formal training serves to create a basic necessary skill set, the real education for a caregiver doesn’t begin until he or she starts working with residents and fellow coworkers. The art of caregiving is learned through a combination of practical experience and mentoring from other workers. For those open to it, this is a learning process that can last the duration of one’s caregiving career.

The real value of experienced caregivers cannot not be found in their technical skills – or in anything that formal education could provide. Rather, it is in their capacity to perform well under difficult – often unreasonable – circumstances without losing their basic sense of humanity. It can be found in their ability to engage residents on an emotional level while under the duress of constant time restraints. It can be found in their willingness to support and sometimes lead their fellow coworkers in an environment that lacks adequate formal supervision. It can be found in their desire to serve as an example of how one human being should treat another without regard to roles or circumstance.

Good caregivers have a monetary value to the Long Term Care industry beyond what their technical skills and education can provide. The industry could not exist in its present form without their effort and caring. CNAs are truly the backbone of LTC. And their heavy lifting does not always involve transferring a resident.

The real reasons why caregivers are so underpaid are rather complex and go beyond educational requirements or even greedy nursing home operators. It is a very real social problem with direct implications to the well-being of our elderly and disabled citizens and should be treated as such.  

The Undiscovered Country

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Yang

Since it’s National Nursing Assistants Week, I would like to say something about our self-identity as caregivers and what I think is our greatest, untapped potential.

It’s popular on social media to refer to CNAs as “angels” or “heroes.” I know what is meant by that and it’s not a bad way to characterize someone who gives so much of themselves on a daily basis. But I’ve never been comfortable with those words. Not out of a sense of false modesty, but rather out of an awareness of what my faults mean in this setting. I resent feeling like I have to expend effort that would be better used elsewhere just to maintain some kind of paragon of virtue image.

While compassion, attentiveness and self-sacrifice is truly the stuff of angels, it is practiced with very human imperfection. Like anyone else, we suffer from personal flaws and make mistakes and sometimes those flaws and mistakes impact those around us, including the people in our care.  And as we cope with our deficiencies and learn from our mistakes, we try to maintain the highest level of care possible. But we’re not always consistent.

You can establish a reputation and patterns of behavior, but the only thing that really counts is what you do next. So you give, you give, you give. And then you give some more – despite your inconsistencies and contradictions.  The key is to keep moving both physically and psychologically. The alternative is to surrender to hopelessness and self-pity. Either it all matters or nothing does. Make a choice.

We don’t have to be angels or heroes. We can be something so much better than that: we can be real. We can be dependable and trustworthy and honest. So much of what we do – the most important things in fact – are done down the hallway, behind closed doors, behind privacy curtains and away from the places where image and labels means so much. That’s where we are needed the most. That’s where we are at our best.

We sustain ourselves psychologically by those singular moments with residents that bring meaning to our work. Those opportunities where we have taken the time to see them and engage them on an emotional level, person to person. At the same time, we can’t help but be aware that others are going without. More than anything, we want to reach them all.

The desire to reach them all is powerful and universal. It is the underlying theme of our collective identity as caregivers. It explains both the frustration we feel and our motivation to give. Listen and watch on the units and you’ll see it. Read between the lines in the postings on the CNA Facebook pages and you’ll see it.

And for the future of long-term care, it is a self-sustaining but largely untapped resource.

Imagine This

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Yang

From a caregiver’s perspective, what would a long-term care system that’s not “broken” offer?

Imagine this…

Start with a 5-1 ratio. Yes, 5-1. Caregivers to residents.

Next, each resident has a private bedroom with a full bathroom. The bedroom opens to a central living area and a common dining area. There are no corridors, no nursing stations and no med carts.

There is a full kitchen with food available 24/7. The caregivers prepare the main meals – with assistance from residents who wish to help. Caregivers are encouraged eat with the residents in the common dining area. Family and friends are welcome to join.

There are no rigid routines or schedules. Residents get up when they want, eat when they want and go to bed when they want.

Caregivers serve in universal or “blended” roles. This means that along with the traditional direct care function, they are also responsible for things like housekeeping, minor maintenance and scheduling. And, of course, they will receive an additional 120 hours beyond their CNA training so that they have the necessary skills to accomplish these other duties. Residents who wish to do so will be able to assist caregivers in routine tasks such as daily housekeeping and laundry. While group activities will be available for those who care to participate, caregivers will also facilitate each resident’s pursuit of his or her individual interests.

All of this takes place in a small group home of 6-12 residents. The home can be a part of a cluster of homes offering all necessary skilled nursing and other clinical and support services. The majority of these services take place in the home, freeing both the caregivers and residents from the burden of transportation. While one RN is assigned to every two homes to meet the medical needs of residents, the RN’s job does not include supervising caregivers. Each home is run by self-managed teams. While caregivers will have the support and guidance of a manager, they make most of the day to day decisions themselves.

Most important of all, caregivers are encouraged – and are given the opportunity and support – to develop deep personal relationships with the residents. These relationships are at the heart of the entire process. Without them, the idea of “person centered care” cannot become a reality.

Of course, it’s not necessary to imagine this. For those who are familiar with the Green House Project, the description above should sound familiar. I’m sure I’ve left out some things, I’ve only recently began learning about the project. In fact, I’ve never actually visited one. However, the concept addresses so many of the problems that we have raised on CNA Edge that I think it is well worth exploring. And that’s exactly what I’ll be doing on this blog over the next several months. There is a Green House in my area and I plan on making a visit later this month and reporting what I find. I also intend on speaking with caregivers who have experience working in Green House Project homes.

From what I’ve learned thus far, my impression is that the Green House Project isn’t just about establishing an alternative to the typical skilled nursing institutional setting. It is a movement whose principles are centered on creating a genuine person centered environment and thus deinstitutionalize the institution and radically reinvent the long-term care system.

No doubt there are tremendous challenges involved in such an effort and not all of them are financial. Advocates of the project express concern over what they call “reverse creep” – a kind of backsliding into old institutional ways and habits. Ideals and principles are great things, but it’s how we put them into practice that really counts. We can work in the most perfect system, but at the end of the day it still boils down to us and how we respond on a daily basis.

For more information on the Green House Project, visit www.thegreenhouseproject.org

The Broken System

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Yang

On CNA Edge, we sometimes describe long-term care as a “broken system.” I’m guessing that most caregivers who have been in the business for any length of time have a general idea of what we mean by that. They nod their heads, shrug their shoulders and go back to work. It’s just the way it is.

But, really… what do we mean by “a broken system?” I think we can look at three major areas.

First, the average workload for direct care workers often makes it difficult to meet even minimum care standards. Recently, I conducted an informal poll in one of the CNA Facebook groups, asking this question: “Do you feel that your facility has enough staff working direct care to consistently meet the goals stated in the resident care plans?” About three hundred caregivers responded. Two people said “yes.” The rest gave various versions – sometimes colorful and emphatic versions – of “no.” While this was not a scientific poll in any way, it is still supportive evidence for what most caregivers take as an obvious truth.

Second, despite some efforts to integrate caregivers into the decision making process, long-term care still relies heavily on hierarchical relationships. However one wants to sugarcoat it, caregivers remain on the bottom of the pyramid. While there is nothing wrong with this traditional organizational model per se, in long-term care it fails in one significant respect: it does not address the deep communication gap that exists between those who set the parameters of care on one side and those who are expected to work within those parameters on the other. On the other side of the gap, the primary focus is on words and the manner in which words are used for professional and public consumption. On the caregiver side, it’s about action. It’s about how one interacts with a resident physically and emotionally within the context of care. The higher up you go in a hierarchy, the further those in authority are removed from that context and upward communication loses its meaning. In effect, we maintain two parallel realities with each having its own set of priorities.

Third, whether it’s a matter of maintaining a well-organized routine, fiscal constraints or legal considerations, the needs of the facility all too often trump the needs of those who live there. While large organizations are able to centralize services and provide an efficient way of utilizing resources, this comes at the price of limiting flexibility. When facilities discourage workers to proceed according to their own discretion and do not trust their ability to apply common sense and act according to the spirit of the rules rather than to their letter, the needs and desires of individual residents are often considered unreasonable or simply neglected. The purpose of a long-term care facility is to return as much as is reasonably possible to a resident’s life what disease and circumstance have taken away. In the name of efficiency, we routinely work against that purpose.

To be sure, all these areas have improved over the course of the last 30 years. We’re getting better at it, but the progress has been uneven and there is no doubt that there is still a long way to go. The question becomes, where are we going? That is, from a caregiver’s perspective what does a system that’s not broken actually look like?

I’ll give you my take on that in my post next Friday.

The Issue of Low Wages in Direct Care

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Yang

When we talk about low wages for direct care workers, it’s important not to confuse two separate issues. The first has to do with our personal satisfaction regarding the work, best summed up by the regularly repeated phrase: “It’s not about the money.” The second issue is about the impact of low wages on the quality of care and on the workers who provide it.

Many caregivers will tell you that they experience significant emotional benefits from the work. They find meaning and fulfillment in making an immediate and real difference in the lives of other people. However, personal satisfaction with the “work” doesn’t always mean contentment with the “job.” The work we find so fulfilling is only one aspect of the job, which also includes things like wages and the work environment.

For some caregivers, the emotional benefits outweigh all other considerations. They find the work so deeply meaningful that they are willing to endure the impact that low wages and difficult work environments have on their lives. It is a noble sentiment.

While the sentiment is genuine, it is also a highly personal one. Meaning is not so much found as created and how we create meaning in our lives is an intensely individual enterprise. It is not something one person can do for another; the most we can do is accept and respect another person’s sense of what brings meaning to his or her life.

It is not a contradiction to accept and even admire the notion that caregiving “is not about the money” on the one hand while condemning low wages and poor working environments on the other. The former is about the choices and perspective of individual caregivers, the latter is about a bigger picture.

Low wages is a major contributing factor to high turnover rates for direct care workers. This has a profound effect on the continuity and quality of care. In her May 5th blog post “Addressing the Difficult Issue of Money,” Paraprofessional Health Care Institute’s (PHI) National Director of Coaching & Consulting Services, Susan Misiorski, sums it up thusly:

“Low wages for direct-care workers has a trickle-down effect on the elders and people with disabilities for whom they provide care. We know that care continuity correlates strongly with care quality, but low wages encourage high turnover rates. Organizations that continually must hire — and train — new staff members likely aren’t providing the best possible care.”

Beyond quality and continuity problems, the issue of low wages has wider social implications. Since wages and benefits in long-term care are impacted by inadequate government reimbursement rates, the issue of low wages is a matter of social policy and a true reflection of the value society places upon direct care work. Misiorski tells us that 22% of direct care workers fall below the poverty line and 43% live in households that rely on some form of public benefits. The very people we depend on to provide quality care often struggle to take care of themselves and their own families. Does it really make any sense to tell workers how much you value what they do and then expect them to live near or below the poverty line?

Yes, we want workers to be properly motivated. But expecting to be compensated fairly for what you do does not equal a lack of compassion. We are all motivated by different things and genuine compassion is expressed through action, not good intentions. While we can admire the notion that “it’s not about the money,” we must reject the idea that caregivers who express concern about their wages don’t belong in the business. We lose too many good workers that way.

It’s How You Say It

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Yang

I would like to expand on something Alice wrote in her post earlier this week. In making a distinction between “kindness” and “niceness,” Alice told us, “Sometimes, the kindest answer is no. Sometimes, setting boundaries that will upset a resident or a co-worker in the short-term but will benefit us all in the long-term is an act of kindness.”

I think part of what Alice is saying is that the tendency of LTC staff to appease a demanding resident can set a pattern of unrealistic expectations. There is nothing wrong with appeasement in and of itself, we do it all the time in both our professional and personal relationships. The problem is when we use appeasement as a quick and easy solution rather than address the underlying issue. By doing so we treat the symptom rather than the cause.

In this sense kindness is the willingness to take the time and effort to determine not only what a resident wants but also why he or she is asking. This requires a measure of patience and self-control. In the heat of the moment, it can be difficult not to react to the tone or unreasonableness of a demand. We’ve all said or heard said some version of this: “You’re not the only one that lives here.”

However, the negative tone of a resident can actually help us understand the root of the problem. Anger, impatience and frustration can indicate an underlying anxiety. Instead of reacting to surface emotions, we can focus on allaying that anxiety.

Anxiety comes from not knowing. We can better endure all kinds of mental and physical discomfort as long as we know that it’s not indefinite and that we have some control over it. For example, I can tolerate hours of being outside on a frigid winter day as long as I know I can go inside and get warm anytime I want. Take away that assurance and in ten minutes I won’t be able to stand the cold.

It’s the same with our residents. When it’s time to say “no” and set boundaries we need to engage with them in a way that reassures rather than reproaches. When we actively listen, negotiate and compromise we are communicating to the other party that they bring something to the table and that it matters. In the process, they gain a degree of control over what happens to them. And it doesn’t always have to take a lot of time. Just that opening can be enough to defuse the anxiety.

In some LTC circles, it’s fashionable to speak of this as “resident empowerment.” We should be careful not to think of this as something we bestow on them, because in reality, it rightfully belongs to them already. Our job is to facilitate it and not deny it through haste or a lack of awareness.

 

 

Everyone Has a Story

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Alice

This resident does not like for his feet to touch the ground. A bath sheet won’t cut it. Don’t even THINK of bathing him without his shower shoes. There will be hell to pay. 

This resident is afraid of the dark. He sleeps with a bedside lamp.  And you have to watch resident in the room two doors down, because she thinks it’s funny to sneak in and shut the light off.

This resident lost her mother to cancer.  She is a tough cookie and she doesn’t trust others easily, but once I opened up about myself, she began to share her life stories with me. Though she thinks she’s fearless, I know that every rash, every mole, every doctor’s appointment brings back those memories of her mother and she becomes so afraid. She used to refuse to go to her appointments, but once I realized the underlying issue, I was better able to help her walk through her fear.

This resident is smart. Sharp as a tack. Honestly, she is probably smarter than the people who run the facility. She misses nothing. She has lived with Cerebral Palsy her entire life and people seem to think that because of that, there is something wrong with her mind. People who should know better. This breaks her heart and enrages me. I tell her to keep her chin up. The loss is entirely theirs.

This resident is a lifelong bachelor who scraped to put two of his brothers through seminary school. This resident lost her husband at a young age and never emotionally recovered. This resident spent so many years self-medicating his PTSD that he lost everything. This resident was a pioneer for women in the Armed forces and writer.

A caregiver knows more about a resident than anyone else in their lives. More than their doctors, family members, administrators, councilors. By necessity, they have to trust us. We are the faces they see the most. We are their hands in their most vulnerable moments. It is a relationship that requires an incredible amount of trust from both parties.

THIS is at the heart of what we do. It is in no text book. It is not a skill to perform in order to pass the certification test, and yet it is the very skill that allows us to provide a quality of life, to notice when something is “off”, to protect, comfort, safe guard, and care for these people who are living with such difficulties.

Those of us lucky enough to be living outside of institutionalized settings take such simple acts for granted. The ability to be seen and noticed for who we are rather than a diagnosis; the freedom to shower when we choose, to eat whenever we wish, to come and go as we please. 

Imagine, for a moment, if all of those freedoms were ripped away and suddenly you were only seen as a “private pay” or a “two person transfer”; if all anyone knew about you was that you were “difficult and combative”.   Your entire life of dynamic experiences, triumphs and heartbreaks reduced to a three page care plan; the slow and relentless ripping away of your humanity. 

 I don’t know at what point society decided that once a person reaches a certain age or level of disability they no longer have to be treated as PEOPLE if it isn’t cost effective. I only know that it is morally, ethically, fundamentally wrong. We, as caregivers, are in a unique position to stand against this mentality.

Let’s face it. We slip through the cracks. People don’t pay attention to us or how we do our job, unless something goes wrong. There is little leadership and no guidance.  Long term care is a bottom line world. In my experience, if things look alright and appear to go smoothly, the office people don’t concern themselves with the day to day realities on the floor. This used to drive me nuts until I recognized the freedom this actually gives us! They don’t care HOW the job gets done as long as it gets done. I’ve learned what works for my residents and what doesn’t. Most importantly, I’ve learned the value of getting to know those in my care on a personal level; as individuals. 

We are given the gift of reminding our residents every day that we SEE them, that they are valued human beings; that they are bigger than their current situation, more important than their illness, and they truly and genuinely matter. You can’t put a price tag on that. It doesn’t translate well into a bullet on a resume, but it makes all the difference in the world for those for whom we care.  Seeing their humanity will remind us of our own, if we allow it.