It will get better. I promise… I must have said that a hundred times to our new resident. She didn’t sleep at all. She searched for her mother, father, friend, a child and a pair of shoes that she must have left in England. She paced the floor for hours on ends. She changed her clothes eight times. She knocked on the doors of my other residents and asked me a garbled series of questions to which I had no good answers. In short, she did absolutely everything BUT sleep.
It was an unusually hectic night and by the end of the shift, I was emotionally tapped out. My new resident was so scared, hurt and anxious and eight straight hours of trying to soothe her in between my other tasks left its mark on me. In the end, I walked with her as she paced, rubbed her back when she cried, and made promises that I can’t possibly keep when she frantically asked questions based on the reality within her mind.
It will get better. I promise. I say it all the time. I redirect and calm and search for pets or loved ones that exist only in my residents’ memories. And yes, more often than not using those skills in those moments will bring a measure of short lived relief. But that doesn’t mean it will get better for them. Not in any lasting or impactful way. I can’t stop the loss of her memories. I can’t take away her confusion and unfamiliarity at her new surroundings nor the sense of abandonment and anxiety that comes from being pulled from one reality and placed into different one. I. Am. Powerless.
Normally I am good at compartmentalizing this awareness. It does no good to let those thoughts dance around in my mind. Such thinking only robs me of space in my head that is better used for what I actually can do to make life better for those in my care…normally. There are moments though when I am struck by a wave of such sadness that it robs me of my breath and I feel crushed; paralyzed by the weight of it all. Usually they hit me when I’m feeling powerless in my life outside of work or have been dabbling too long in my mind for my writing. My mind can be a fun place to be, but there are roads in there better left untraveled. The fact is, both on and off the clock, I deal with some pretty heavy shit. It’s kind of what I do. And acceptance of that, even joy in it, is so hardwired into me that I forget sometimes that it takes a toll if I’m not careful. Those short lived crashing waves of momentary despair are my wake up call. HEY ALICE! You’ve been playing too long in the deep end again! Come up for air!
So how do I stick with it and keep the faith without losing the ability to feel? Without becoming hardened? I get out of the problem as quick as I can and get back in the solution. Can I cure Alzheimer’s? No. Can I make someone living with Alzheimer’s laugh hard? More often than not. Can I force someone to get sober? No. Can I offer numbers and resources to someone who is in desperate need of help? Yes. I can do that. There are many aspects of life over which I have no power at all. Some but not all. I can DO. I can consistently and relentlessly keep moving forward. I can brighten another person’s day. I can do my job to the best of my ability. I can be kind and I can never give up. Even when it sometimes feels like the world is begging for it. That I have power over. That is my choice. Powerless and helpless are not the same thing.
This blog started with the idea that the voice and experience of caregivers has been a vital missing ingredient to the improvement of Long Term Care. A conversation about reform that doesn’t include our voice is like bread being baked without yeast.
When Bob found me on a CNA support site I had been searching for answers. For quite awhile, I had felt lost. I was appalled at how those in our care were being treated by the system as a whole. I was beyond frustrated that nothing my fellow co-workers and I said seemed to matter to those in charge. I was saddened by the fact that this was accepted as a matter of course and I was unwilling to believe that nothing could be done about any of it. By providence, fate, or incredibly good timing, I was ready to jump in when Bob explained his idea for this blog and asked me to be a part of it.
Over the last few years you have walked with us as we expressed the frustration, beauty, humor, love and loss that comes as part of the package in this field. Many of you have shared your experiences with us in the comments or emails. I had no idea how far reaching this blog would be or how much I personally would be affected by writing for it. I did not realize at the time that by simply writing a post a week not only would I be an active part of the solution and have the ability to reach others, but I would be opening a door to allow all of you to reach me.
You…yes YOU, reading this, give me hope. You aren’t sleep walking through life telling yourself that one person can’t make a difference so why bother trying. Instead you are reading a blog that’s very existence proves otherwise. It is an incredibly inspiring and deeply moving experience to be a part of CNA edge. In the process I have learned that I am not alone, that we can and are making a difference and that we all have a responsibility to keep speaking our truths, even when we feel it falls on deaf ears.
If you are reading this, you have impacted my life. You inspire me. Writing these pieces force me to look beneath the surface to the deeper essential realities in this field, to dig deep, be honest about my emotions and fears and face them head on. I can never give up because of you. You force me to be brave because how can I ask you to be willing to take a stand and consistently work for change on every level of this field if I am not doing so myself? How can I expect you to believe that you can make a difference if I don’t believe it myself? What experience is more rewarding than to inspire and be inspired? So, from the bottom of my heart, thank you.
As a caregiver, I cut my teeth on first shift memory care. For years that was my world. Fast paced, short staffed and unpredictable, first shift was nonstop action. I remember thinking it was ridiculous that there was a pay differential for third shift. After all, there work load was so much lighter than ours. It just didn’t seem fair. I thought along the same lines about private care. One client? How hard could it be? Why were they paid so much more than those of us in facilities? Their job was a cake walk in comparison. Of course, at the time I had no experience with private care or third shift but it seemed like common sense to me. I was wrong.
Contempt prior to investigation. My thinking at the time can best be described by that simple concept. And we are all guilty of that from time to time; Viewing people, events, and moments solely through the lens of our individual perception without the benefit of direct knowledge. If the past few years have taught me anything, it is that the remedy for such thinking is actual experience.
Private care was not easy street. In many ways, it was much more challenging for me than working in a facility. Sure, I occasionally lamented the pace and amount of work we had to accomplish on first shift in my facility, but truth be told, that is when I’m at my best. It was harder for me to pull back and refocus my energy than I expected. The hours were long and it was difficult for me to set work boundaries without the guidance of an agency. It could be very lonely and at times I felt very isolated. The flow of the shift was entirely based on other people’s moods and level of pain. There were also amazing aspects of private care. I loved the family. All of them. I loved the freedom of working independently and having the time to really get to know my client. I loved being involved in bringing holidays back into the house and making her laugh. I loved the deeper connections I was able to forge because my focus wasn’t split eight ways to Sunday. That also made it very hard to leave when a new opportunity arose. My two year journey into private care has enriched my experience in this field and added skills, abilities and insight into my work that I would not have gained had I not taken that path for a little while.
Though I’ve only just begun my jaunt into third shift, I’ve already made some realizations. I understand why they offer a shift differential now. It’s true that the work load is much lighter but that is all I was right about. When I worked first shift, I ran hard. I bled for the job, but when I clocked out for the day I was able to leave work at work. For the most part, anyway. Not so on third. So much of my time in the day is spent trying to effectively work sleep into my schedule so I can be awake and alert through my shift that even when I’m not at work, I’m thinking about work. Or thinking about sleep. And everything else has to be worked in between those two things. The extra money isn’t about what happens on the clock. It’s about the willingness to rearrange life off the clock in order to work when the worlds asleep. It’s about the toll that takes on your mind and body. Sad to say, I would not have connected the dots on that had I never taken this position.
So I am very glad my experience in this field has evolved and hope it will continue to do so. These experiences will remind me not to engage in the “shift wars”. We do not need to tear each other down, ESPECIALLY without having the first clue as to what it’s like from first hand experience. I consider it a lesson well learned.
I stared numbly at the words that my mind refused to comprehend. Missing man, thirty, found dead in the creek wearing only his underwear. He was just a kid. And suddenly I was filled with such a moment of fury and heartbreak that it took all that I had in me not to pick up the nearest item and throw it through the window. HE WAS JUST A KID!
People who make snap judgements will look at the grainy photo that went along with the article and make false and hurtful assumptions. Probably another junkie. One less drain on the system. He must have been doing something…and then dismiss it from their minds. In that moment I was filled with a rage that such people cast down opinions from the lofty heights of their moral smugness without knowing the first thing about the person or his story.
He was one of my residents several years ago. I remember how shocked I was that someone in his early twenties and physically healthy landed in an assisted living facility. His roommate was more than fifty years older than him and unwell. I thought that there must be a better place for him, more suited to his needs. A safe place where he can be around people his own age with similar challenges and make friends and have a better quality of life. I didn’t consider at the time that deep cuts to the mental health care budget robbed him and many others like him of a better option. There are no long term treatment centers for those living with mental disabilities. He never complained, though. Never once did I hear him say a negative thing about anyone or anything.
He had the mind of a child, but he also had the heart of a child. He was a big guy. To look at him, you wouldn’t think he was so gentle a spirit. You wouldn’t know that he was the first one to help a feisty old lady get down the hall in her wheelchair; just about the only person she would LET help her. You wouldn’t know that he’d give the shirt off his back to a friend. I used to worry about him being taken advantage of by some of my other residents until I realized how much he got from being able to help another. He was kind and he was lonely but he had a good sense of humor and the moments I could coax a smile from him reminded me why I was in this field.
And then one day he was gone. People move from facility to facility or back home to their family with little to no warning. I’ve gotten used to quick adjustments. Old residents move and new ones show up just as suddenly. I didn’t see him for a few years after that, but everyone who has ever been in my care has left an imprint in my life and every now and then I would wonder how he was getting along. Then one day last year, I saw for myself.
On sat nights, I volunteer at a behavioral health center. And there he was! In the support group! Now, the meeting I bring in is completely voluntary so I always feel hopeful when the clients in that short term center choose to come to it. I’m able to offer some numbers and resources that can get them on a path to wellness at least. I feel like I can bring them a little hope, but if I am being honest with myself, I could tell he was not looking so good. He was every bit as kind in that setting as he was when he was living at the facility… but his smile seemed haunted, his eyes looked sad and he appeared way too thin. After the meeting, I gave him a gigantic hug and told him to take care of himself. To talk to his case manager. That I loved him to pieces and that everybody missed him. He smiled and waved as he walked back to his unit. I wish I had taken five minutes to get him some phone numbers. He didn’t ask for any and maybe he wouldn’t have used them if I had, but I wish I tried.
That was the last time I saw him alive.
I want to tell him I’m sorry. I am so sorry that you died in such a way. You deserved so much better. I’m sorry that people failed you and had failed you most of your life. I’m sorry you weren’t protected the way you should have been or encouraged and given the opportunities that so many take for granted. I’m sorry I rushed out after that meeting rather than stay and talk with you for a few more minutes. I’m sorry that cuts to mental health funding and Goddamn politics played a part in the untimely death of such a good kid. I’m sorry there was no one to whom you could reach out and that you fell through the cracks of the systems designed to protect you time and time and time again. I hope part of you knew that you were not alone. I will not forget you, my friend.
“I KNEW you’d be back with your stupid smile on your stupid face!”
I bit the insides of my cheeks to keep from laughing as I quietly slipped into her room to assist her to the restroom.
“Well, Alice, at least this time you were prepared.”, I thought to myself, trying hard to keep my face neutral as my resident hurled a steam of inventive and diverse insults in my direction. Thankfully, she was able to walk and talk at the same time. Physically, she did fairly well on her own but she was just unsteady enough on her feet that I didn’t feel comfortable leaving her to her own devices.
I had been warned. From name calling to throwing soiled briefs, this resident was a challenge. Maybe it’s because I had been in private care for awhile or maybe it’s because I had worked so many years at my last facility that I had a deep and loving relationship with all of those in my care, but I thought there was no way she could be that tough a case or that maybe there was a touch of dementia or mental illness involved…WRONG…SO wrong. Her mind was fine. Sharp as a tack, actually, if her comedic timing and penchant for hitting hard with the verbal blows were any indication.
“You DISGUST me. Every one of you! Women are nothing but TRAMPS nowadays”, she kept ranting through the partially closed bathroom door. I stood just outside waiting for her to finish up, still trying my damnedest to keep from laughing and maintain some semblance of professionalism in facing the wrath of…well of the meanest woman I had ever met, quite honestly.
“STILL smiling?!”, she grumbled as she shuffled toward her bed, “you ought to run away with the circus!”, she hissed. She literally HISSED at me.
“Well, I wanted to when I was a kid! But I realized that I was way too clumsy to be an acrobat and I don’t like clowns. It’s not that I’m afraid of them. I just don’t think they’re funny”…while that was all true, I was surprised to hear the words fly out of my mouth. Apparently so was she because her mouth dropped open in utter surprise. I took the opportunity to quickly cover her up with the blanket and make my escape.
The rest of the shift flew by and I felt utter relief as I pulled into the driveway in the early morning light. I went in the house, tossed the keys on the counter, made my way up the stairs and collapsed onto the bed. My boyfriend woke up and asked how my shift was. I groaned and went into great detail on how difficult and mean this one resident was. He listened to me rant for a minute and then pulled me close to him.
“You’ll find a way to reach her. You always do”. He kissed me softly on the forehead and I smiled to myself. The one thing I had forgotten, at least momentarily, was one of the biggest reasons that I am in this field: To reach people so they know they are valued and not alone. No one is born that mean. And with his reminder and his kindness, I knew that I would try again with her tomorrow. And the next day. And the next…
I felt all my energy drain quickly as I punched out at the end of my shift. I was thoroughly enjoying my transfer back into facilities and I relished the challenge of working third shift as I do all new experiences in this field. Even so, there is a marked difference between my ability to push through my new hours on the clock and my hours off.
I’m on work mode when I clock in for the night. Everything falls away except my enthusiasm for this new opportunity and my desire to do the best job I possibly can. I’m not bothered by sleepiness and I have never been bored on the floor. Even at three in the morning, there is always something to do. I spend the periods of downtime getting to know the layout of the gigantic facility, acquainting myself to the residents who are night owls and occasionally getting some writing in. Clocking out is an entirely different story. Exhaustion that I didn’t feel on the clock falls upon me as I walk out after my shift, squinting my eyes against the harsh sunlight that slices sharply through the mental fog in which I am suddenly enveloped.
Why won’t my car start?! Oh. Because I’m trying to put the key fob into an ignition switch that doesn’t exist. What day is it?! Come on Alice, you can do this. Two days ago, you were volunteering at the behavioral health center. You do that Saturday’s. That makes today Monday. Monday…what am I supposed to do Monday’s? Should I sleep now or push through until this afternoon and sleep then? Or maybe I’ll sleep a few hours now and a few hours later?…I have never thought so much about sleep in my life. It’s not rocket science. I should be able to figure this out!
And difficulty with sleep and keeping track of the days was just the start. My emotions off the clock have been haywire. Like the worst case of PMS ever. One minute I’m fine and the next I am completely convinced that I am ill suited to handle even the most basic life events. When should I eat? Brush my teeth? Shower?…it’s topsy turvy world! And then there’s the anxiety and disorientation that comes from waking up at four in the afternoon to start your day. While I wouldn’t go so far as to call it a panic attack, those first few moments of wakefulness haven’t been so pleasant.
After I finished my first week, it
occurred to me that those living with dementia or Alzheimer’s exist in a much more severe and progressive version of this state of vagueness. That awareness stopped me in my tracks and I was filled once again with admiration at the strength and courage it takes for them to walk through each day. I know it even if they don’t. So I decided to employ what I like to call the three “C”‘s on myself much the same way I do when I work on the memory care unit. Consistency- decide on a sleep schedule and stick with it. Schedule outside events and social interactions around it. I’m still working on that one but I feel good just having that plan in place. Calm- recognize that my change in sleep patterns is going to have an emotional and physiological impact on me. Realize that feelings are not facts and this will improve with time. Compassion- go easy on myself. Practice self care and if occasionally I have to have an off the clock melt down, allow it to happen rather than repress it.
It is getting better. I am actually adjusting faster than I expected. My head feels less muddy day by day and there is something special about working when the world is asleep. Third shift has challenges that I didn’t expect and it isn’t the cakewalk I believed it to be when I was working first shift for all those years. But I really like it. In time, I think I will love it. And I am already learning from it.
Everyone knows each other here.
It’s been so long since I’ve been the new kid that I’d forgotten how uncomfortable it can be, instantly thrusting me back into that awkward, lonely state of mind that I had whenever I had to start a new school.
Just focus on the work, Alice. Take in the new experience and be yourself. Such thoughts have become muscle memory when facing major changes and lately my life has seemed nothing BUT major changes. Still, I found myself aching for the close friendships I had at my old facility. Years of shared experience had forged bonds between my co-workers and I that time could never erase from my heart. I hoped they knew this. Now at this beautiful new facility full of strangers in the hours when the world sleeps, I half wish I was back there with them in the light of day.
To be fair, most of my new co-workers have been nice and friendly, if somewhat skeptical at first of my ability. I get that. They don’t know my work ethic. They don’t know that the odds of me quitting suddenly are about as good as getting struck by lightening inside on a sunny day. My enthusiasm is oddly off putting to those who work this shift and the fact that after a week, I still have to wander around until I stumble upon the time clock probably doesn’t look promising. Mainly, though, it’s just that I’m new. I’m new to them and they’re new to me. Third shift is new to me. The facility is new to me. It’s all…new.
Life is change and I tend to grow on people. Eventually this will feel like home. I adapt quickly. Still, to all my past co-workers, to my friends who happen to read this, thank you. Thank you for always making me feel at home. Thank you
for teaching me. Thank you pushing me to continually move forward. Thank you for your support and friendship. Having worked with you has made it easier to be the new kid here.
I took a deep breath as I entered the human resource building for orientation. That was new. I’ve never worked at a facility with a human resource department. It was a small building nestled in the back of the sprawling campus.
“Facility” seemed to be a misnomer. The property of my new employer stretched easily for a mile. There were several houses, each with a separate living environment complete with their own restaurant style dining area, an onsite rehabilitation center, a gym and indoor pool with access for both clients and employees when off the clock, and the assisted living building in which I would be working, complete with a memory care unit. It looked like a town more than a long term care facility. There was even a map included in our new hire packet.
Focus, Alice. Just breath. I listened as the HR representative discussed the medical benefits and company policies. I tried to ignore the tiny voice inside that whispered all the “firsts” that I was about to face. This place had technology that I have never used before. This place was bigger than my entire apartment complex. I have never worked third shift. For two years now, it’s just been me and the families in my care.
I tried to quell the fear and embrace the excitement of another new opportunity. I reminded myself that I’m a quick study and a dedicated worker, that it’s always uncomfortable to be somewhere new and that in my experience all growth, professional and personal, has started by walking through those emotions.
This new job opportunity is in a facility that is beautiful and clean and peaceful. There is art on the walls of the hall and windows so the sunlight just pours in from all angles. There are pet birds in the main lobby and it could not look less like a “nursing home”. It’s the sort of environment I would like to see made available to all our elders and those living with disabilities, regardless of income. I’ve never been a part of a company that seems so invested in the happiness and well being of their employees. The turnover is much lower than average and the results show. For the first time since I’ve started my journey in caregiving, I don’t feel the need to fix, elevate, educate, or problem solve on a large scale. Maybe this time, in this place, my role is simply to learn. What they have accomplished appears to be working for workers and residents in a way I have not yet experienced. So, tonight, I will walk into my first ever night shift at 11:00 PM with an open mind, grateful heart and use what nerves I experience to fuel my desire to do well.
I had to have the big hard conversation. It is handsdown the most difficult part of being a caregiver for me. Long hours, short staffing, poor management, bodily fluids…even dealing with death itself is easier than telling someone that I am leaving them in order to embrace a better opportunity. I’ve done it before. You would think that having previous experience with such conversations would make it easier. You would think.
All of my reasons for making the change are valid ones. I gave notice. I’m even doing my best to find someone to fill my position, knowing full well that is not my responsibility. I have all the emotional support in the world from loved ones who know
how hard it is for me to change jobs. I know this is about taking the next step forward and not abandoning a client…but it still hurts. I still feel guilt and I don’t get to minimize the hurt my client is feeling in order to make myself feel better. As always, the woman who was once a client is now a friend and it is never easy to disapoint a friend.
Work boundaries have never been my strong suit. In caregiving, this is a double edge sword. On the one hand,it keeps me flexible and this is a field that demands flexibility. On the other hand, it takes a good kick in the ass and a shitstorm of chaotic emotions for me to move forward. And it’s not just my overblown sense of responsibility or protectiveness; it’s not just the underlying feeling that I am abandoning someone in need. It’s not just about them missing me…I will miss them. I always do. Letting go is also not my strong suit.
Tomorrow, I will go in for my usual twleve hour shift. I will not wallow in my fear or sadness. I will not be morose. I will let them be wherever they need to be emotionally. This may feel like walking on knives but no one can love every aspect of what they do. I will allow this to teach me. Maybe I will set better work boundaries in the future. Maybe I’ll learn how to let go of outcomes outside of my control. The one thing that I refuse to learn is how to not be so close to those in my care. This is hard. This SHOULD be hard. Just because this move is the right one for me does not mean it doesn’t negatively affect others. Just because it’s the right choice does not mean it should be easy. I take care of people for a living. Taking proactive steps forward does not mean minimizing the emotions that are derived from those actions. It means walking through them and using the experience to grow.
The alarm clock cut through my dreams, it’s deceptively cheery jingle jarring my consciousness awake. I groaned, fighting the urge to hit the snooze button just once more. I had to go in early. No more time to snooze.
As I ran about the apartment in my pre-work routine of craziness, grabbing coffee, hunting my keys and making sure that I was wearing the same shoes on my feet, I mentally reviewed the day ahead. It was going to be an uphill battle.
Uphill battles are nothing new to me in this field. Both my experience in facilities and in private care have come with their fair share of obstacles. Not being one to shy away from adversity, more often than not I relish the challenges. It’s when I begin to view life as NOTHING but uphill battles that the trouble begins.
As a caregiver, I deal with a lot of loss. We all do. Death is inevitably part of our job. I’ve learned to view it not as a tragic necessity but as an inevitable conclusion. There is joy and peace in knowing that I have a part in making the last chapter of someone’s life as pleasant as possible, making certain that those in my care never feel alone. It is why I do what I do and that part of the gig I consider sacred.
As a woman in recovery who volunteers at a behavioral health center, I deal with a lot of loss as well. That kind of loss is different somehow. That kind of loss comes with a sort of survivors guilt that makes me choke on my own powerlessness. Why do I get this when others don’t? What could I have said or done differently that may have prevented another’s death or insanity or consequences? The answer is nothing. I can’t force a moment of clarity on another person. I can only share my experience.
I tell you guys this because I know we all have our baggage and we work in a field that can skew our perspective. Because I have to be vigilant, I recognize that change as it’s happening. When I start obsessing over the two people I was unable to help rather than the ten that I was, I know I need to check myself.
I cashed in all my “give up” chips years ago. Now as long as there is a breath in me, I will…I MUST keep moving forward. There is so much I want to do in life; so many people I want to reach and help. My fellow caregivers, my residents, anyone and everyone who feels lost and alone…we all have those shared experiences. I was given a second chance. I do not have the luxury of wasting it.
As a caregiver, I have the privilege of seeing the face of courage every shift. People who have survived cataclysmic and life changing events. People living with dementia, addiction, AIDS, strokes, PTSD, cerebral palsy; people of all ages and I SEE them…the very essence of who they are as individuals shine through their disorders. Their personalities, sometimes difficult personalities, may have been informed by their challenges but they are not defined by them. They laugh and cry and occasionally rage but they face their uphill battles every single day. They have no choice. Neither do I.
My keys were in hand, the same shoes were on my feet, my lid was tightly on my coffee cup and I was ready to face the day. I took a deep breath as I opened the door into the bright sunshine and reminded myself that it was uphill battles that made me who I am today. For that I am incredibly grateful.