I am a person. I am not dementia. I am not diabetes. I am not simply a resident or client. I am not a care plan or a two person assist. I am not room 242 needs something for agitation.
I was a dancer. An ambassador. I fought for this country. I was a nurse. An engineer. I am a mother, son, daughter, sister. I am dying but I’m not dead yet. You make rules and say they are to protect me, and yet you don’t see me. You don’t ask me what I think. I am one more blurred face. I am one more bed filled. I am a number on a census.
Your voice and demeanor change when my family visits. Suddenly, we’re pals. Suddenly you are filled with concern but if I were to ask you how I slept last night or what my biggest fears were, or my favorite color or pet peeves, you wouldn’t know. That’s beneath your pay grade. That’s for the caregivers, if I’m lucky enough to have a good one that you doesn’t run off in search of greener pastures. And I don’t think you realize how truly demeaning it is to not be seen as an individual; how, more than anything else, the minimizing of who I am as a person to a checklist robs me of my dignity. There shouldn’t have to be a list of patient rights in order to be seen as a human being. Is there a more important rule than that? It shouldn’t be so complicated.
The higher up the food chain you are in this field the further you are removed from the people for whom it exists and the legislators making the calls are about as high up as one can get. The best way to find out how to improve the quality of life is to ask those who receive and provide the hands on care. It’s a no brainer.
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.
Old People’s Home
– W.H. Aulden
All are limitory, but each has her own
nuance of damage. The elite can dress and decent themselves,
are ambulant with a single stick, adroit
to read a book all through, or play the slow movements of
easy sonatas. (Yet, perhaps their very
carnal freedom is their spirit’s bane: intelligent
of what has happened and why, they are obnoxious
to a glum beyond tears.) Then come those on wheels, the average
majority, who endure T.V. and, led by
lenient therapists, do community-singing, then
the loners, muttering in Limbo, and last
the terminally incompetent, as improvident,
unspeakable, impeccable as the plants
they parody. (Plants may sweat profusely but never
sully themselves.) One tie, though, unites them: all
appeared when the world, though much was awry there, was more
spacious, more comely to look at, it’s Old Ones
with an audience and secular station. Then a child,
in dismay with Mamma, could refuge with Gran
to be revalued and told a story. As of now,
we all know what to expect, but their generation
is the first to fade like this, not at home but assigned
to a numbered frequent ward, stowed out of conscience
as unpopular luggage.
As I ride the subway
to spend half-an-hour with one, I revisage
who she was in the pomp and sumpture of her hey-day,
when week-end visits were a presumptive joy,
not a good work. Am I cold to wish for a speedy
painless dormition, pray, as I know she prays,
that God or Nature will abrupt her earthly function?
The poem that Lynn shared in her post a couple of weeks ago inspired me to start looking at poetry again. This one in particular really spoke to me today. The lines of this poem match up with the faces in my head. I think that’s why I like it so much. It puts into words something that I’ve never been sure how to verbalize- how do I help people who’ve lost so much? Each line brings to mind a resident to match it.
Mrs. E- a stroke took her sight, and old age took her strength. Every time I help her with a shower, she apologizes for taking up so much of my time. Mrs. A doesn’t like my help- her mind is going, but while she still has her body she wants me to know it. Whenever I forget, she’s quick to remind me, “I can do it.”
A resident whose name I can’t remember anymore. “Would you like to go to Happy Hour?” A blank stare at the wall- no. “Would you like to watch some TV then?” An eye roll and a shrug- yes. I turn the TV on, and change it to the channel she asks for. I’d like to stay and cheer her up. But I have two call lights going off, and a shower to give before dinner. The stare has been transferred from the wall to the TV.
Mrs. F. I like to think that she and I have a bond- she might be losing most of her function, but her sense of humor is still intact. After dinner she leaves to round the building in her wheelchair, and I let her go. It’s better than keeping her cooped up on the hall with nothing to do.
The geri-chair group on the Skilled unit. After dinner, we group them around the TV until we can put them to bed. Mrs. W sits and watches the TV, and next to her Mrs. K mutters nonsense, the same phrases repeated over and over.
Sometimes I find myself forgetting that they used to be different. I’ve only known them like this, and in a way, I guess that makes it easier? I don’t have to remember, to look at their faces and see what used to be. But if I pay attention, I can see glimpses that still shine through.
Mr. J used to be a farmer and every once in a while he’ll tell me he can’t go to bed because he needs to check on the cows. Mrs. F isn’t the person she used to be, but she absolutely lights up every Thursday evening when her grandson visits. It’s the longest I’ve ever seen her sit in one place without getting bored.
Mrs. V used to let me practice my Spanish with her, before she stopped walking down to the dining room. Mrs. M likes to chat about crime shows. Mr. B likes to discuss logic and human nature.
They’re still there. Behind the eyes of each of my residents sits a person trying to hold onto what’s left of their life. I find it hard to deal with, and I get to go home at the end of the shift. They don’t. If I’m burnt out, I can’t imagine how they must feel.
My favorite quote comes from the book Unwind by Neal Shusterman. The book itself has nothing to do with long term care, but this one quote has always stuck with me- “Love the ones you can. Pray for the rest.” I’m trying to make this my work philosophy. Each day, I am given a group of people to care for, and for that day, they are mine to love. I can’t do everything. I can’t make legs work or memories come back or pain go away. But I can smile. I can listen. I can look and actually SEE. I might not be able to do everything, I can do SOMETHING. And then I can go home and pray about the rest of it.
Last week, PHI posted the third installment of their 60 Caregiver Issues Campaign. This issue brief highlighted how the Affordable Care Act brought coverage to many caregivers who previously had no healthcare insurance and discussed how proposed changes now before congress could impact the nation’s direct care workforce. The link to PHI’s report is at the bottom of this post.
It boils down to this: among its many provisions, the ACA included an expansion of Medicaid that benefited the working poor and thus provided healthcare coverage to caregivers who did not previously qualify because they “earned too much.”
Here are the numbers directly from the PHI brief:
- From 2010 to 2014, approximately 500,000 direct care workers nationwide gained health insurance following implementation of the Affordable Care Act.
- The uninsured rate decreased 26 percent during the same time frame, from 28 percent to 21 percent.
- These coverage gains are primarily attributable to a 30 percent increase in the number of workers insured through Medicaid programs.
The repeal of the ACA threatens this coverage and many caregivers may again find themselves without the means for adequate health care. In a field where workers are at high risk for injuries resulting in musculoskeletal disorders and face the risk of serious infection every day, this lack of healthcare coverage is devastating. It not only leads to higher turnover rates that negatively impact the care of our elderly and disabled, it also reinforces the tendency to view caregivers as short-term workers, an expendable resource that can be used up, disposed of, and replaced.
We cannot properly care for the most vulnerable of our citizenry if we overlook the health and well-being of those who care for them. The two cannot be separated. In a time when the demand for caregivers has reached a crisis, reducing direct workers’ access to adequate health care is an unwise – and unhealthy – step backward.
The PHI report can be found here.
In his recent post Yang brought our attention to PHI’s campaign to educate the public about caregiver issues, and gave us a link to their introductory video. In that video PHI posed these questions:
1. How can we ensure caregivers get the training they need?
2. How can we keep care affordable to families?
3. What data is needed to help policyholders take action?
While these are important questions, if you ask caregivers themselves why some are leaving the field and others wouldn’t think of entering it, they’ll no doubt raise a different set of issues. At nearly every conference or webinar I attend I ask about staff-to-resident ratios and caregiver wages. Usually there is no reply, as if I were speaking from some parallel universe and couldn’t be heard. If there is a reply it’s on the lines of “Yes, we know. But it’s complicated. These things take time. You can’t expect things to change overnight.”
Yes, there is a shortage of caregivers. And yes, good care isn’t affordable. In fact good care can’t be bought. By that I mean whatever you might be paying, either for in-home care ($20/ hour? $40?) or for care in a long-term care home of some sort ($6,000-10,000/ month), the more care the person needs as health declines, the wider the gap between the person’s needs and the quality of care the person actually receives.
Everyone is selling solutions like workshops and videos and toolkits and new business models to long-term care administrators or home healthcare systems’ owners. Some groups are advocating on a state or even national level and some gains have been won. But from the outcomes I’d say that a lot of the effort is wheel-spinning. (An increase in the NYC minimum wage for home care workers to $15/hour by 2021??) Today’s aides have rare luck if they earn $15 an hour and have a regular 40-hour work week. An aide may have six to ten residents/patients to care for, and many of those will suffer from dementia and/or be unable to walk alone safely or even support themselves standing. (Yes, I know I’m a broken record…) Do you know what it’s like to try to wash, toilet, transfer these residents several times a shift, and keep them from falling the rest of the time? (If not, go back and read CNA Edge.) This is before we even begin to provide enrichment a la ‘person-centered care.’
I want the whole healthcare industry – including those championing reform — to acknowledge what the biggest issues are for caregivers: our obscenely low wages and our outrageously onerous, even unsafe, working conditions. These organizations don’t yet tackle caregivers’ most urgent needs: a living wage, safe work conditions, and a work environment that supports person entered care. We need to ask them, What are you doing about these issues and what can we CNAs do to support you in this?
When Malcolm X called for a change in Americans’ attitudes on race and was told that such changes (culture change, if you will) take generations, he reminded us of this: At the beginning of World War II Germany became our enemy and Russia became our ally. But when the war ended we, America, saw Germany as our ally and Russia as our enemy. That attitude-change didn’t take even one generation. The healthcare industry needs an attitude adjustment. It is not okay for long-term care operators or owners of home healthcare agencies to charge exorbitant fees to clients and return a too-small fraction of these fees as wages to their direct-care workers, while management and professional staff and consultants are handsomely compensated. It is not okay to hire employees unless you train them in the skills they need to work with the elderly frail, starting with English language skills. It’s not okay for the industry to tolerate poor work ethics: last-minute callouts; texting while on duty; and most of all, failure to interact with residents in a way that says to them “I love being with you. Thank you for letting me be part of your life.”
There are thousands of followers of CNA Edge. As Yang exhorted us, we need to support PHI in their effort to educate the public about caregiver issues. Let’s ensure that when they frames their 60 Issues, they don’t airbrush our issues out of the picture they’re drawing.
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.
When I was 9 years old, my heroes were Detroit Tiger greats Al Kaline and Willie Horton. Like just about every other kid in the neighborhood, I rooted and watched in adoration, wishing someday to be like them. I mimicked their behavior on the field, giving special attention to what they did while at bat.
Every hitter in baseball performs a uniquely personal ritual before each pitch. This ritual consists of a series of specific behaviors: stepping away from the plate, adjusting themselves (sometimes in PG rated fashion), glancing toward the third base coach for signs, more often than not they spit – no one spits like big league ball players – then stepping back into the batter’s box, perhaps tapping the plate or their cleats, before going into their stance. They do the same thing, the same way, every single time. While every hitter engages in these behaviors for the same reason – to help them focus – both the specifics of the ritual and the batting stance are highly individualistic; no two hitters do it quite the same.
While I imitated their behavior on the field and developed my own set of batting rituals, I knew very little about my heroes’ personal lives and didn’t really think much about it. I was far more concerned with their batting averages then what they like off the field. Since I didn’t know what they were like as real people, they couldn’t actually teach me much about real life. They were heroes, not role models.
The real role models were the people in my immediate environment: my parents, my older siblings, my teachers at school. They were the ones who taught me how to be responsible, how to conduct myself in public, the proper way to treat other people, how to respond to adverse circumstances, how to give and how to receive. And so much more. While they used words to instruct and correct, observing their behavior was what laid the foundations for my values and attitudes as an adult. The most powerful lessons came from what they did, not what they said.
As a young adult, the notion of hero worship seemed awkward and unnecessary. I had become much too sophisticated and cynical for something so childish. But I still had role models. They came in the form of my coworkers, other caregivers whose behavior I admired based on my own values. My formal training and directives from management instructed me to treat the residents with caring and respect, but they couldn’t tell me how to do it. It was in watching how other caregivers approached and responded to residents, the real-life interactions with all the give and take within the context of care, that provided the model and showed me how to practice genuine compassion. The lesson was in the act and how it made me feel while I observed it.
Later in life, I rediscovered the concept of heroes. However, instead of the larger than life athletes of my youth, they came in the form of everyday people whose behavior I found inspiring in some way. Like a 9 year-old rider named Nathan who I met when I began taking horseback riding lesson a few years ago. Both Nathan and I were beginners, starting at the same skill level. We didn’t end that way.
Nathan was born with a moderate form of cerebral palsy. However, through treatment, including a long series of surgeries, a lot of physical therapy and tons of family and community support, Nathan was able to ride a horse. Not only did he learn how to ride, but he started performing as an equestrian vaulter.
Equestrian vaulting is a unique sport and performance art that combines elements of dance and gymnastics on a moving horse. The horse moves at either the walk or the canter and is tethered by a lunge line operated by an instructor or coach who thus controls the horse’s movement. This leaves the rider free to focus on his or her performance.
I participated in vaulting too. But I never progressed past the walk. While the movements at the beginning level are relatively simple, the fact that the horse is moving complicated things and I couldn’t master even the basic movements at the canter. But Nathan did.
By the time I discontinued my lessons four years later, Nathan was riding at a couple levels above me. As impressive as that was, what really inspired me was the manner and attitude he brought to the sport. As a performance art, so much of equestrian vaulting is about presentation: doing something that is very difficult and making it look easy. While the movements require technical skill and considerable physical exertion, each one is capped with a moment of showmanship: the graceful wave, the smile, the playing to the audience and judges. In these moments, Nathan excelled. He was a natural, the source of his audience appeal came from within. He absolutely loved being on the horse and performing in front of those people. It wasn’t just his success in overcoming the physical obstacles that I found heroic, it was his courageous and irrepressible desire to experience and express joy in what he was doing.
More recently, my concept of heroes has blended with who I consider role models. It’s just one thing now. I am inspired by and want to emulate anyone who, like Nathan, refuses to allow difficult circumstances to keep them from finding happiness and meaning in their engagement with the world around them.
The reality is that if you live long enough, you’re going to experience loss and change, sometimes deep loss and drastic change. We all, at any age, can experience a sense of existential dread, that underlying anxiety that the things we rely on to give us our identity can breakdown and be taken from us. For our elders in Long Term Care, that dread often is their reality. I admire and learn from those who have suffered this kind of loss, but are willing not just to continue, but have the courage to redefine what to them makes life worth living. As I enter my seventh decade on this planet, these are my heroes, these are my role models.
As caregivers, we need not be passive bystanders, silent admirers to the courage of our elders. Since we are there, with them, we have an opportunity to play a crucial role in facilitating that courage. It’s not a matter of simply telling them that life is still worth living, but to discover to the best of our ability what that means for them, one person at a time. Because that definition is as unique and individual as the batting rituals of the heroes of my youth.
In today’s post, I would like to share my thoughts regarding our participation in the 2016 Pioneer Network Conference.
To begin with, this was the first opportunity that Alice, May, and I got to meet each other in person. What a pleasure. After working with my co-contributors via the Internet for over two years, I knew that they were both talented and creative writers who shared my core values as a caregiver. But in getting to know them in person, I discovered two witty, well-read, and sincere individuals who were just fun to be around. It was easy see how their passion and dedication for their creative work as writers blends so well with the compassion and dedication they have toward their elders. This was evident in our conversations and in our presentation at the conference.
As special treat, we got to meet our sometime contributor and much appreciated supporter, Minstrel. This was a huge surprise, because we had no inkling that she was going to attend the conference. It was great “talking shop” with her and getting to know her a little better. Meeting her was definitely one of the highlights of the conference for us.
The conference was a surreal and wonderful experience for us. We were very well treated, not only in regard to the accommodations, which were first rate, but in the support and encouragement we received from the Pioneer Network Conference staff. Public speaking is not exactly our forte, but we felt like we were in the hands of pros, and their guidance and preparation made us feel as comfortable and confident as possible.
Alice, May, and I were given the honor of speaking to the opening plenary session of the 2016 Pioneer Network Conference. CNA’s have presented in previous conferences, but this was the first time direct care workers have addressed a plenary session. While we were thrilled with the opportunity to share our work and were very well received, it became clear after spending a few days at the conference that our invitation to appear said a lot more about the Network and the direction it is heading than it did about us.
The Pioneer Network is at the center of a culture change movement that recognizes the significance and power of the caregiver-resident relationship. While the movement has always placed this relationship at the heart of culture change, there is a growing sense that caregivers must become more active within the movement itself. Last year, only five percent of the attendees at the conference were CNAs. I’m not sure how many caregivers were there this year, but I expect it’s up from previous years. And I think it’s only the beginning.
In coming years, I would not be surprised to see increased efforts by conference planners to reach out not only to caregivers, but to any class of workers within Long Term Care who have daily direct contact with residents. Moving away from medical and institutional models, and toward person centered models means that how elders perceive their experience in Long Term Care is paramount. Central to that experience are the bonds they form not only with caregivers, but with housekeepers, maintenance workers, food service personnel, physical therapy aides, activity therapists – anyone, in fact, in the “neighborhood” who has daily personal direct contact with our elders.
There were times before, after, and even during our presentation that I had a sense of preaching to the converted. Obviously, this was friendly territory for caregivers who share the vision and values of the Network. At the same time, the genius of this movement lies in its acute self-awareness. Those at the center of it understand that the movement must perpetually remake itself based on the actual experience of elders and those closest to them. The movement wants and needs to be challenged, lest it become irrelevant to the people it purports to serve. If culture change means a shift in attitudes and behavior of caregivers toward those for whom they care, it also means the development of a deeper awareness on the part of policy makers – and on the part of advocates for change – of how caregivers actually experience the work. I hope that our effort to enhance such awareness did indeed serve as a challenge to the movement.
Of course, through the sessions and just talking to people, we learned a great deal at the conference ourselves. We hope that at least some of this will be evident in our future blog posts. As this movement evolves, we as individuals will have to grow with it. New ideas emanating from practitioners at every level ensure a steady supply of new and creative approaches to old problems. Personally, I was humbled by how much I still need to learn.
Perhaps what struck me the most was how quickly we felt at home at the conference. While it was a surreal and wonderful experience, there was also something very familiar about the people there. These were kindred spirits who believe in the same thing we do. It was an honor and a pleasure to be among them.
If life has taught me anything, it is that there is far more beneath the surface than meets the eye. Most of us wear our damages and wounds on the inside where they are safely tucked away from the view of others. This allows the illusion of normality for some as they walk through their 9-5 lives, thinking and engaging on a surface level with all whom they come in contact.
Some people cling to that normalcy as if it were a lifeboat that will save them from the crashing waves of genuine uncertainty that threaten us all from time to time. But is it real? I mean, what IS normal, other than a setting on a drier?
These very normal people are the ones who walk past my client and I in a store and look at her with a mixture of pity and fear, as if they very sight of a woman with obvious physical challenges reminds them that their illusion of normal can smashed in an instant. They are the same people who would pay an obligatory visit to a relative once or twice a year at the facility for which I worked and try unsuccessfully to hide their distaste for the residents that weren’t their family members. As if my people were nothing more than their diagnosis or age.
For a long time, I felt actual rage at the short-sightedness of these normal people who are more likely to grumble about people looking for handouts when they see a homeless vet than actually consider the fact that he is a human being with a story just like the rest of us. It would ruin my peace of mind. The CALLOUSNESS of it. But then it hit me. They don’t even realize that’s what they are doing. It’s a subconscious reaction to distance themselves from such potential outcomes. They HAVE to see the sick or poor or ill or elderly as somehow lacking or broken in order to protect the mental image they have of themselves. After all, any other insight would force them to accept the fact that we are all one cataclysmic event from becoming what they most fear.
Ah, but I know what they don’t, both through my own life experiences and those for whom I have been blessed enough to have in my care. I know that when you are forced to accept life as it is, you learn how to create a new normal. You learn how to adapt. What my residents and clients have shown me time and time again is that life is a balance. When one ability is lost, another is gained. My client lost mobility, but she gained perspective, perseverance, a higher tolerance for pain. She has a level of empathy for others that she said was a bit lacking before her health failed her and never once have I heard her say that life is not fair. Think about that. It is truly humbling.
I have seen people in perfect health have a complete meltdown over a coupon in a grocery store. I have heard countless versions of “why me’s” from those who have all they could possibly need to be happy. If “normal” means taking life for granted until catastrophe teaches you otherwise, I’d just as soon learn from the outcasts.
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.