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.
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.