Category Archives: resident quality of life

Nursing-home-made

Sunflower May

In compliance with HIPAA, all resident names and identifying details have been altered or removed. 

It’s funny, how a person’s possessions can tell us so much about them. Most new residents come in with very little: just the clothes they wore in the hospital and maybe a small bag. Then, their families either start bringing in loads of stuff…or they don’t. I have seen rooms so crammed full of personal mementoes that it’s hard to care for the resident; so many clothes in the closet that the door won’t shut and every surface covered with knick-knacks.
I have also seen rooms bare weeks after the resident moved in, the only proof of occupation being the person in the bed. Only a few clothes, no knick-knacks…no decorations or pictures.

Mrs. L seems to be one of the latter category. After a week, she still only has the one bag that she had clutched so tightly on the first day, plus a couple outfits. They’re nice, but the kind of nice that has been worn for years and years. Her family comes often, but they seem more stressed each time and their visits get progressively shorter.
There’s always a learning curve, some time required to start feeling comfortable in the new environment…but Mrs. L doesn’t appear to be adjusting at all. She won’t leave the room, she hardly eats and from what I can tell, she seems to spend most of her days screaming into her phone and crying. I decide I can’t kept walking past such agony. We don’t know each other very well, but that’s about to change.
“Hey, can I sit down?” I ask, walking into her room and gesturing to the empty chair (provided by the facility) that sits by her bedside. She shrugs and I take that as permission. Good Lord, but it feels wonderful to get off my feet.
“I’m May, if I haven’t introduced myself before,” I add…although I’ve introduced every day this week. “Do you need anything?”
She shakes her head. I’m trying to decide between asking another question and telling a story about myself when she suddenly starts talking.
“You can’t help, nobody can help. Can you make me better? Can you tell the insurance company not to be assholes? Can you give my family a fortune so they won’t have to sell my house to afford ‘getting me the help I need’? Can you buy back everything of mine they had to sell, so I don’t have to look at bare walls while I wait to die?”

I can’t. I can’t wave a magic wand and sort out the economy, endow her with the money she needs to have a good life even though she is now elderly and disabled.
The only magic I have at my disposal are my imagination and my hands. I stay for a few minutes, now holding her hand as she cries yet again, then I slide off the chair and leave the room.
It only takes a few words in the right ears. When I come back, I’m not alone and we aren’t empty-handed.
We disperse over the room, laying out our various offerings. The Laundry department brought up clothes that have been donated to the nursing (usually by families of resident who have passed away in our care); Activities gave several left-over decorations from the various Arts-and-Crafts over the years. Nursing gathered personal care items from the supply room and arranged them in her drawers. Staff from every department drew pictures and scribbled down nursing-home-made Get Well cards…but the best bit came from a fellow resident. She heard of my cheering-up campaign and told me to pick out the prettiest flowers from the bouquet she got for her birthday and give them to that “poor lady”.

Small acts of kindness in Long-Term Care are not whistling in the dark. With each act of compassion, we light a candle. True, it will take a lot more candles than I can personally light to lift the shadow of greed from our broken system…but that’s the funny thing about kindness. Even when it’s not enough to turn the tide, change the culture or right the wrongs of this world––it is still appreciated and it can still mean the world to that one person.

My hope is that, one day, we will have more to give than what we can scrape up. I hope that one day, compassion will be considered along with costs, that questions of ethics will be given equal standing with questions of economics. 

Broken System vs Personal Responsiblity

Sunflower  May

In compliance with HIPAA, all resident names and identifying details have been altered or removed.

If there’s a story of my career in health care, it’s probably: Nothing happens the easy way, or when I have time to deal with it. Take right now, for instance.
Mr. K has a reputation for being a jokester; he loves to laugh and he loves to make others laugh. The aides are his best audience as we always appreciate a bit of levity. Unfortunately, Mr. K doesn’t so much speak as he does mumble. It’s hard to understand him…especially when he’s cracked up laughing at his own joke. I know from experience that if I keep just repeating that I can’t understand him, his joy will vanish like his independence. So, I lean down and put my face right next to his mouth, in order to catch the words of what I am assuming is a killer joke. When he repeats himself yet again, I don’t take in his words. I can’t; I’m a bit distracted.
His breath is so foul, it smells like something died in it.

I didn’t brush his teeth this morning. I haven’t brushed his teeth all week. As I gag, I ask myself “How did this happen?”

Oral care is often the last part of personal care to be done, and by the time I get to it, I’ve been in the room for fifteen minutes already and ten other call lights are going off. It seems like a quick task, so it’s easy to say “I’ll get to it in a moment,”…and then never actually find time for that moment. When you’re scrambling just to change your people, making the time to do oral care is hard. Adding another five minutes to each resident’s personal care time, when you have ten residents and you’re already running behind…yeah, that adds up quick. Sometimes it is literally a choice between brushing Mr. K’s teeth or changing Mrs. L’s brief before she soaks through her pants. In other words: when you only have ten minutes, what is the most effective way to use them? Most often, we choose the big problems to tackle, the things that have an immediate impact on our residents’ quality of life.
The other problem is that we get so used to dealing with emergencies, crunch-times and hard decisions. We get so used to cutting corners just to survive the day that we form habits around the emergencies. The little things that we had to drop during the crisis? We forget to pick them back up. We get used to not brushing teeth.

The problem of oral care is the problem of this broken system of long-term care, narrowed to razor-thin focus: too few aides taking care of too many residents. We have a system that punishes the aides who take the time to provide good care, and then punishes them again for providing mediocre care. And yet, for all that is true, Mr. K’s mouth still smells like something died in it. I am still his aide…do the flaws of the system really absolve me of my personal responsibility? Being a CNA is, in so many ways, to be forever caught in the moment of drowning: my best isn’t good enough and yet my best is always required.

I laugh, like I got the joke. “Good one, Mr. K! Tell you what, while you think of another one, I’m going to brush your teeth, ok?”

Life is better when it has a purpose

Sunflower May

“I wish I could die.”
“Don’t say that!” These words are a knee-jerk reaction, an involuntary verbal response to the five words I dread most as a CNA.
“But it’s the truth,” Mrs. T replies. “I hate this…this shadow of a life that I am reduced to now. I hate being utterly useless, a drain on society and a burden for my family.”
“You aren’t useless,” I say, a bit savagely. I defend my residents’ humanity to the rest of the world, must I defend it to my residents themselves? “Really, you aren’t useless. Nobody is useless, not even people who are truly helpless…which you aren’t quite, my dear.”
But apparently, my words do not comfort Mrs. T. “Of course you don’t understand,” she sighs. “You’re young. You may have known doubt, uncertainty about what to do with your life…but feeling useless, having to sit in a wheelchair while you remember everything you used to with your time and talents…you don’t know what that feels like. I hope you never feel like you’ve outlived everything good about your life.”
I can’t help but remember all the times us CNAs have debated quality of life, wondering if our residents are truly happy with the little scraps of humanity we’re able to keep for them.
“I wish I lived in a state that has right to die laws,” Mrs T continues. “Oh, don’t screw up your face like that, little girl: I have the right to wish myself free from pain. I’m never getting better, so that means wishing myself dead! And if you really cared about me, you wouldn’t want me to have to linger like this, useless and in pain. Life is better when it has a purpose and I don’t have one anymore. You don’t know how much that hurts…even worse than the physical pain.”
That’s going to far for me: I would never dare tell somebody how they should feel, but I expect the favor to be returned. “What kind of caregiver would I be if I wished you gone? If I didn’t believe that your life right now has value? And you’re not useless: you make me smile. I love coming in your room and never knowing what the heck is gonna come out your mouth!” This current conversation being the exception, perhaps…
Mrs. T smiles a bit herself at that, a weak and rather watery smile, but the best one I’ve seen on her all day. “I’m sorry, but after a lifetime of doing real, tangible good for my community…making one person smile seems like such a small thing.”
“Excuse me,” I say frostily, “but my happiness is a huge thing…to me.”
That startles a laugh out of her. We laugh together, and if a few of the tears rolling down our checks are born of something besides mirth…well, who can blame us? I hate these conversations: there’s no right thing to say. If I agree with her, I’m saying that I think the world is better off without her—something I most vehemently do not believe.
If I disagree, I’m denying her the validity of her feelings of pain and grief for the life she can no longer live. And I’d be lying if I said that the thought of me being in her position doesn’t fill me with dread.
“Look,” I say eventually, “I can’t—I can’t pray for you to die. I just can’t. But I can…I can pray for you to find peace, in whatever form takes.”
“That’s a good prayer,” Mrs. T murmurs. “And, since I’m stuck here as our state does not have right-to-die laws…if my new purpose in life is to enrich your life, honey, you’d better make damn sure your life is good one. You make something of yourself, little girl, for my sake. Deal?”
Since becoming a CNA, my feelings about quality of life and the right to die have morphed dramatically. On the one hand, I’ve seen the beauty of life shining through the most debilitating circumstances. I’ve seen human dignity when society saw only brokenness.
On the other, I’ve seen pain needlessly prolonged because the family could not bring themselves to let go, long after the resident was ready to go. I’ve seen unbearable suffering dragged out, a natural death that stretched on for days and weeks. When the end finally came, there was no grief, only relief that the pain was over for everyone.

I suppose I wish for peace for all my residents, peace in their last years and in their final breaths. Peace, as I’ve learned, is not always the complete absence of pain, but at least I wish for my residents to meet their ends without agony or anguish.
Whatever else I may believe, that, as Mrs. T said, is a good prayer.

 

If you don’t get it

Sunflower

May

The strangest things about training new people is watching them react and then adjust to the work. It’s more than learning the ropes of a new job…more than finding your feet in new place.
Health care is a different world and long term care is a strange corner of that world.
It’s interesting to watch as people who had no previous experience in caregiving learn what it means to be a CNA, the emotional shift that has to happen, the mental hurdles that have to be overcome. It is somewhat like facing your own mortality, or your own fragility, to see human being made frail and helpless by disease and injures. You see in the residents all the horrifying ways your own body might betray you. It’s awkward and uncomfortable and the natural reaction is to distance yourself from all of that. It’s easy to let the diagnosis swallow the person…but if you want to be a good caregiver, you can’t do that. You have to fight to see the face of the person in front of you.
I like to watch for that moment when the green aides realize that, the moment when they break through the strangeness and the discomfort and connect with my residents. The moment when my residents become theirs too. Sometimes, despite my best efforts, there are people who just don’t get it, who can’t make that shift. For those people, the moment never comes and I’m left wondering what, if anything, I could have done differently.

These training experiences leave a bitter taste in my mouth after…during, I often feel like I’m in a plane that’s falling out of the sky. One instance stands out clearly in my memory. It’s near the end of training, after almost a week of trying and failing to teach this young man the job. I’ve been walking him through everything step-by-step for the past few days and in that time he has displayed absolutely zero initiative. If I don’t tell him what to do, he just stands back with his hands in his pockets and looks at me. Only me. Never the residents.
It’s gotten to the point where I’m sick of the sound of my own voice. Maybe I should just record myself and put that on continuous playback…it’s not like I’m saying anything new, just repeating the same instructions over and over. The same basic instructions, one in particular.
“Talk to your residents,” I say again and, if I’m honest, exasperation is creeping into my tone. “Talk to her, tell her what you’re doing.”
He nods…and doesn’t say a word. I’m about ready to scream.
“Look, I’m not just saying this to say it. I mean it: talk to the person you’re taking care of. This is important for two reasons. A, it lets them know what you’re doing and more important, B, it reminds you that you are working on a person. Not a plastic dummy, a human being just like you. You’re not here to wipe an ass, you are here to take care of the person that ass is attached to; so talk to her!”
He nods again. And still doesn’t speak to her, just like he hasn’t spoken to any of the residents during care all week. All of a sudden I have this vivid mental image of reaching across my resident, grabbing his jaw with my gloved hand and forcing it open and closed like a marionette. Instead, I squeeze my eyes shut and sigh.
“I’m not trying to be bossy or mean, but I just don’t understand why this is so hard for you,” I finally say.
“It’s just weird,” he replies stiffly. “I feel uncomfortable with…talking to a person who doesn’t even understand what I am saying. It’s not even on my skills check-off. I don’t get why you’re so stuck on this.”
“Treating your residents like the people they are shouldn’t have to be a list of things to learn,” I grind out between my teeth. “And who are you to say what she does and doesn’t understand? I’m stuck on this because it is the most important part of the work we do. Would you want someone to push and pull you around without ever once making eye contact or saying hello? I sure as hell wouldn’t. So talk to her.”

If you can’t understand the bond that grows between caregiver and resident, if you ‘don’t get’ the importance of interacting with your residents…I humbly submit that you do not need to be caregiver. Compassion, empathy: these aren’t skills that I can teach. At most they are an attitude I can encourage in the new aides I train; an attitude I can nurture in myself.

Suffering the consequences

MaySunflower

“I just can’t believe it!” my supervisor rants. She’s red in the face, her breath coming in quick and angry. “I hope you all know you’ve done this to yourself! Why do you keep shooting yourself in the foot?”
It’s a typical: something’s happened and we’re in a meeting. The supervisors are informing us of our mistakes and we are silent on the opposite side of the room. Typical. Happens a lot in long term care.

But don’t jump to conclusions. This isn’t a story about the problems of leadership of long term care (that’s for another day). My supervisor might be angry, but she’s got reason to be. This situation is, maybe miraculously, exactly as she’s said.

Anyone who’s set foot in a nursing home knows exactly what I’m talking about. Gossip. Older aides being mean to new staff. Working in cliques. Aides refusing to a call light because “it’s not my resident”. Saying, in the middle of the hall way with residents around “I hate my job!” Acting like it’s an inconvenience to take care of a resident.
You know, shit like that.
My supervisor is asking a valid question when she demanded “Why?”
Why do CNAs shoot themselves in the foot? I’m not saying every aide does it, but I’m not going to deny it happens…more often than it should.

I think, in part, it’s because this is a hard job and so personal in every detail. I was trying to explain to a friend how long term care was a different beast from other kinds jobs. Without belittling the importance and value of other jobs,
“Imagine every mistake you make at work. Now imagine that mistake happened on a human being. Now imagine that mistake happening on someone who has lost the ability to do anything for themselves.”
Is it any wonder we aides get stressed? But it’s not just stress. It’s also guilt. I got in a hurry and tore the skin from this human being’s arm. I walked past that call light because I was so hungry and that human being soiled himself. I got frustrated and the human being, whose wellbeing is my responsibility, heard me say how much I hate this place.
That’s a lot of guilt and you’d better believe it stings.
At the same time, every aide knows all too well that feeling of helplessness. It’s not a good situation and who knows when it will get better. Some days, it feels like it never will.
I did my best today. It wasn’t enough. My residents still went too long between changing. I haven’t brushed their teeth in so long. I did my best today, but it’s not enough. It’s never enough. My personal passion can never cover the flaws of the system.

Guilt combined with helplessness and pure stress turns into frustration. Frustration spills out.
Even worse, frustration can turn some people numb. It’s a losing battle anyway, so what’s the point? Why exhaust myself when the effort doesn’t change a thing?
Have you ever seen a caregiver turn numb? Have you ever seen a caregiver lose their sense of empathy for the resident? When their perception of the resident shifts from “human being whose welfare is my responsibility” to “nuisance in the way of getting my work done on time”.
It’s not good. It’s also not rare.
In this state of mind, it’s easy to lash out, say things we shouldn’t. It’s easy to exude a toxic atmosphere when there’s so much resentment, guilt, helplessness and other negative emotions built up inside us.

I get it. I really do: I’ve been an aide long enough to be familiar with both the guilt and the helplessness. When your best isn’t enough, when nothing you do seems to make a difference, when exhaustion sinks its claws into you…I get it. We’re only human; we aren’t infallible angels. It is too much to ask of us, at times. How can we be positive and cheerful with new aides when we’re just so damn tired?

The flaws of the system do not absolve me of my personal responsibility to take care of my residents. Proper care means proper staffing…means not running off new aides with a toxic attitude. I’m the one who chose to fight this battle…so either I keep fighting for their dignity or I quit. No other options, no other door.

Simply put, CNAs do not have the luxury of shooting ourselves in the foot because it is not just us who suffer from the consequences. Other human beings, whose welfare is our responsibility, suffer as well.

Let’s Prove Them Wrong

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Alice

    We have received some wonderful and articulate emails from a reader who posed this question:  How do we make life better NOW for those living with dementia? She went on to explain how advocacy is what drives the flow of funding and most of the funding is going towards finding a cure for Alzheimer’s disease. While vitally important, it does nothing to help those currently living with the disease in the long term care communities. Who is speaking up for them? Who us speaking up for us?

       The frustration is that here on our level, there is little meaningful conversation of such things. We are expected to show up and take what is dished out. We don’t do it for the money, they say. It’s just a “stop-gap” job. If they were smart, they would have furthered their education. Treat someone as disposable for long enough and they begin to feel disposable; begin to act disposable. Is that what we want? Disposable people caring for the most vulnerable section of our society in their hour of greatest need?

      Or maybe it’s an indication of something deeper. They treat us as disposable because on some level they feel that those within our care are disposable. They have aged out. They no longer contribute to our society. Wisdom, experience, history, dignity are not valued commodities in this fast paced world of “me first and the give me! give me! mentality. Old, sick people barely make the priority list and those of us who care for them don’t make the list at all.

      No one SAYS that of course. I have never once seen a bumper sticker that reads Old People Suck and yet the situation in which many seniors and people with disabilities are forced to live is heartbreaking. There is no other word for it. They devalue them and by doing so they devalue us. And I’ve got news for you, folks…we allow it. Hell, sometimes we encourage it by our own behavior.

      One in four seniors will suffer from elder abuse. I’m no statistician, but I would say there is a probable correlation between quality of care and treatment of the work force. One in four. The injuries caregivers suffer on the job is sky rocketing. Again, this is supposition, but I would say exhaustion due to being forced to pull double shifts or multiple jobs to barely make ends meet would contribute to this. The standards for certification is low, the wages are low, the work is difficult, and the turnover is high. Why, why, why would ANYONE choose this quagmire? Because someone has to. Because those of us in the know have a moral obligation to do everything we can to be a part of the solution. Because it’s a battle worth fighting.

         How do we make life better NOW for those living with dementia? For all of those living with a disability that requires care? I have no idea. I’m winging it. I give the best possible care to my client. I write for this blog. I notice lonely people and try to make them less lonely. That’s the only way I know to make any difference that counts. I’ll tell you this though, the most meaningful changes are going to begin with us or not at all. They think we’re disposable. Let’s prove them wrong.       

The Power of Caregivers

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Yang

In her December 2 post on CNA Edge “Quality of Life is a Precious Gift, Alice distilled the true meaning of a caregiver’s work into one fundamental principle: “Improving the quality of life for those around us.” While the idea may seem obvious, how we go about living up to it is anything but easy, given the typical long term care work environment.

We all know the list. It’s an environment where caregivers are overworked and underpaid, overwhelmed and undersupported. It’s an environment that features disconnected management and rules that make little sense at the caregiver’s level. It’s an environment where mistrust and dissension among staff is common.  It’s an environment that breeds cynicism and futility.

While we can’t ignore the negative aspects our work environment, how we respond to them is entirely up to us. Even in the worst of circumstances, we can always do something to improve how our elders experience their time with us. In fact, doing so is a kind of moral imperative – something that we know by reason is the right thing to do and a far more powerful and consistent motivator for ethical behavior than the directives and admonishments issued by those above us in the LTC hierarchy.

Alice’s “simple idea” is more than just about doing the right thing. It provides us with a standard of behavior that we can cling to amidst the chaos. Or as Alice put it:

“For me, realizing that truth has brought me great peace. It simplifies it. I don’t have to fix, save, diagnose, manipulate, or perpetuate any negativity. My job is to make life as positive as possible and to preserve the dignity as much as possible for those in my care.”

By persistently returning to that simple idea, we make a conscious choice to liberate ourselves from the drift into despair.

May makes a similar point in her post “Soap and Thought”:

“Sometimes it’s too much, being a CNA. There’s too much stress, too much everything until I think I just can’t take it anymore. Days when I want to tear out my hair; shifts when I want to leave and not come back. The problem, I’ve come to realize, is that the bad things are the big things; the skyscraper problems that draw our eyes and threaten our strength. The good things, well, they’re quiet, understated. Things like washing my hands with a resident that is special to me.”

We need these “quiet, understated” moments. And do so our residents. These moments are as significant as the bigger issues that plague us. In some sense, they are more real. 

The common thread between these two posts is that despite the difficulties, we are not powerless. For Alice, it’s a simple idea. For May, it’s a simple act. As we proceed through our daily routines, we may not be able to directly address the larger problems, but we do have the ability to alter our immediate environment. And our immediate work environment is a big part of our residents’ living environment. In that we find our true source of power.

None of this is to suggest that direct care workers will never play a major role in making fundamental change in the Long Term Care system. In fact, it really can’t be done without us. But to play that role effectively, we must never stray too far from what really gives us our strength.  I’ll explore that idea in my next post.

Quality of Life is a Precious Gift

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Alice

     The longer I’m in this field, the more certain I am that my main job requirement is to improve the quality of life for those under my care. Yes, as caregivers, we are the eyes and ears for the doctors and nurses. It is true that many times we are the first to notice when those for whom we care are “off,” but often our hands are tied after reporting changes and passing along observations. It used to frustrate me to no end, that feeling of powerlessness; that feeling of being dismissed with a pat on the head, as if my concerns were not valid. It didn’t occur to me that perhaps my point of view was askew.

      After so many years in this gig, death doesn’t bother me nearly as much as it once did. Oh I still mourn the losses, but I take great peace from remembering the moments; the real interactions and shared memories that make the caregiver/client relationship so unique. This is not a career for the squeamish and there is something quite beautiful about guiding and supporting another human being through the twilight. No, it’s not the inevitable setting of the sun that scares me. It is the horrible quality of life that our elderly and sick are often forced to experience at the end of their days.

          Maybe it’s because this time, I was lucky enough to be a part of something different that this point was driven home. I was able to witness a woman surrounded by love and family who were willing to do whatever was necessary to keep her comfortable and active. I saw what that sort of support gave her in a very short time. I watched as she thrived in that environment and when she died, it was quickly, with her faculties intact, after spending a beautiful day with her family.

         It was in stark contrast to my experiences in a facility. I think facilities can create a sort of Stockholm syndrome: You know it’s not a good environment in which to live or work, but you adapt because it’s what you know. You tell yourself there are worse places. At least it’s a job. At least you can be there for the residents. It’s not so bad. Deep down, you know it is though. It’s no way for anyone to live. At least in the facilities for which I’ve worked.

       That got me thinking. When I strip our job description to the bare bones, the meat and potatoes, it comes down this simple task: improve the quality of life for those around us. Depending on the framework in which we are employed, this can be difficult. Simple and easy are not necessarily synonyms. It’s a simple concept, but at times it’s an incredibly daunting task. Especially when you consider the system in which we work. Still, for me, realizing that truth has brought me great peace. It simplifies it. I don’t have to fix, save, diagnose, manipulate, or perpetuate any negativity. My job is to make life as positive as possible and to preserve the dignity as much as possible for those in my care. There are many ways to accomplish this and I hope to explore those ideas in future posts.