I get so tired sometimes. I want to shrink from this world that seems to subsist and thrive on anger, panic and fear. Has it always been this way and I’ve just been oblivious to the fever of it or is this some new beast fueled by everyone’s absolute certainty that they are right? The days of context and nuance seem to be gone for the moment and shades of grey no longer exist. Black or white. Right or wrong. Bottom line thinking for an end results world.
I am never very certain about very much. In my experience, that way lies madness. I have certain ethical guidelines and passions that anchor me and I try to keep my mind open to learning from others who have different points of view. Work has been vital for my sanity in this social climate where people seem to be filling some inner need by yelling at one another and coming up with shallow, half-hearted and blame-filled excuses to the deep and complex problems that our society is facing. I guess that’s easier and less satisfying than putting aside anger and wounded egos in order to come together and effectively work toward common solutions. We currently live in a world where everyone wants to be the boss but no one wants to lead.
Those of us who work in Long Term Care are no strangers to the damage such a management style causes. It’s flat out ineffective. The best supervisors are the ones who roll up their sleeves regardless of who is watching. If I only see you when state is in the building, I’m less likely to trust you around those in my care. I have more respect for an LPN who will help me calm a resident who is lashing out in fear than a career administrator with degrees on the wall who’s first solution is Ativan because she’s about to give a tour to a potential new client and wants the hall orderly. That is the difference between a leader and a boss. Because I find my own personal standards of quality care to be much higher than what is expected of us, I have no need for a boss. I learn from leaders, however, and that makes them as invaluable as they are rare.
I decided to step back from Facebook for a little while. Every other status I read is angry. Every article posted has completely different facts cherry picked to enrage or validate you depending on what side of the given position you take. They all agree that everything is the absolute worst. The only difference is who they believe is to blame…and all of that is crap. Cynical, self serving crap wrapped in a bow made of ego.
But, Alice! Aren’t you concerned about the state of affairs?! Of course I am, possibly shocked and appalled reader, but here’s the thing…this is NOWHERE NEAR as bad as it’s been. In my years in this field I’ve cared for people of color who actually lived through the civil rights era. I’ve cared for a Vietnam vet who lost his sight, and a WWII vet who lost his leg. I’ve cared for people who were children during the Great Depression and for people who lived through the Cold War. I’ve had women in my care who lived in a time when it was more socially acceptable to be an abused wife than a divorced woman. Collectively, we survived all of that. As a society, we have faced our worst behaviors and bit by bit we have grown from them; progressed step by painful step forward. I refuse to believe that this…this angry, entitled, backwards thinking reality we are all actively creating is going to stick. I have more faith in us than that.
Individuals are all more than one thing. Are my residents simply their Alzheimer’s disease? Or prostate cancer? Or schizophrenia? Are they not bigger than that? Am I not more than my political affiliation? Is it not beautiful that we are all people who bleed the same? It is a combination of different ideas and individual experiences that gives life it’s richness. When did we decide that we should only surround ourselves with those who look, think, believe and behave exactly like us? How can we possibly come up with and solutions to vastly complex issues without the benefit of diverse ideas and the freedom to dissent without fear?
So I would like to thank every single person who has ever been in my care for teaching me gratitude and perspective. Life is too short to waste on fear and anger over troubles that we create or stir up in our minds before they even occur. I would also like to thank you for living through adversity and sharing your stories so I know what courage looks like. I would like to thank my fellow caregivers who adapt to the reality on the floor rather than the one we are told to expect. We come together to make the most of what is rather than complain about what should be…ok to be fair sometimes we do both but for the most part we are about action. It is a diverse world on the floor, full of people from all walks of life with a variety of skills and reasons for being in this field. Despite what some may think, we cannot all be painted with one brush and for that I am incredibly thankful. This field has honed a strength in me that would not have developed otherwise and directed a passion for purpose toward a path where it would be put to good use. I get tired, but I’m one of the lucky ones. I get these reminders at least five nights a week. I can step back from the combative and fear filled world online and reorient myself to the world in which I live.
I’m sure in the light of day, this facility is charming. I can’t quite remember the impression I had of the building in which I work during my two day orientation, which took place in the bright sunshiney hours. The relief and excitement I felt about the new job opportunity dimmed my keen powers of observation; the same Sherlock Holmes level of visual acuity that prevents me from getting into the wrong car and trying to start it more than twice a week. So I can’t say for certain that in daylight it’s a charming, lovely place. I can only assume. At night, however, there is no more fitting a descriptor than “creeptastic”.
Let’s start with the huge portrait of an incredibly stern looking man above the fireplace. His eyes seem to follow you everywhere and then there are the clown pictures and blood red carpets and creaks in the floor and the overabundance of wind chimes…all of which may add whimsy and class to the joint in the day, but at night? No. It feels like the environment of a stereotypical horror movie that would be panned for being too predictable.
I say this with great affection. It’s exactly the sort of strange and surreal experience that I’ve come to appreciate in my life. It’s anything but ordinary but after this weeks stretch on memory care, I realized that buildings are not the only things haunted at night and there is only so much I can do to chase away another person’s inner demons.
It makes sense, really. When does my mind spin the most, picking apart the day and chasing my own imaginary fears? When is my own anxiety at its peak if I had a rough day? Right before bed. And if I can’t sleep? Forget about it. My mind runs wild. Why would I expect any different from those in my care?
At night in the quiet, dimly lit halls of the memory care unit, my night owls pace. Sometimes they are just confused about the time. That is easy to redirect usually. I explain to them my days get topsy turvey too, we share a chuckle, I tuck them in and off to sleep they go. I can do that all night without losing patience. No, it’s the other situations that get to me.
I call them the “night dreads”. When one of my folks has a rough night, it’s very different than what I experienced when I worked the day shifts. Sure, there was any number of challenging behaviors and there was less time to redirect in the day but it was different. Maybe because there were more people around and the extra stimulation kept them more alert. They seemed less…haunted. Nightmares can be hard to shake off. A vivid enough one can muddy my perspective for awhile but when I’m awake, I’m awake. This is not how it is for my residents. A nightmare will shake them to their core. They don’t always understand the difference between their dreams and waking life. Often they will wander up and down the halls, looking for lost loved ones. Where is my mother? Where is my love?…letting them know they aren’t alone and are safe seems to help. I put them back to bed and sit with them for awhile. Sometimes I sing quietly. I make certain that the bathroom light is on.
More often than not, I will be repeating that throughout the night but each episode seems to be just a little easier. Each time the resident seems a little less scared. Usually, right as the sun is coming up, they are able to rest more deeply. Those nights are the hardest; the ones when I can’t chase away the ghosts for them, I can only put them at bay. They leave me exhausted, sad and a little scared at the idea of anyone having to live through the night dreads and little frustrated that the best I can do is walk with them through it.
Thankfully, tonight was free of that. Tonight there was mostly laughter. I have a resident who without fail leaves his room wearing the oddest combinations of clothing: long johns with a back brace and a red ladies hat with a purple flower (no telling where he picked that one up) was today’s fashion choice.
“Is is time for coffee?” I managed to keep a straight face for five seconds when I saw his get up.
“No, buddy. It’s 3:00 in the morning.”
“Ok. I’m going back to bed then. Don’t forget me in the morning!”, he called over his shoulder.
“Never, my friend.”, I assured him. You know what? Today, I’m going to make a conscious effort to see how this place looks in the sun. Most things are clearer in the light of day.
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.
I was hurting. It wasn’t the only emotion I was feeling or even the strongest but it was there, nagging at me; an annoyingly persistent hangnail in my soul, taunting me in the back of my mind. The weather wasn’t helping with its clouds heavy with unspilled rain lingering above as I drove the ten miles to what promised to be a long shift full of me biting my tongue through twelve hours of political discussion.
I’m not sure why everything decided to crash in on me this morning. Sure, I have had a long tumultuous stretch in my life, but the good has far outweighed the bad and the opportunities abounded in ways that I never saw coming. Still, emotions don’t always work in logical ways and I just felt so…tired. So uncertain of everything.
Leave it at the door, Alice. It wouldn’t do to simply plaster a smile on my face, keep an upbeat tone of voice. No. What I have discovered throughout my years in this field is that what those within my care lack in physical ability they make up for in emotional awareness. This has especially been true in private care, where we spend so much time together one on one. I can’t just fake it. My client would call me on it. I took a deep breath before I unlocked the door and made a silent list of all I had in my life for which to be grateful and got to work.
I thought I was doing well. I really did. I honestly believed that I had worked my way through that vague nagging malaise that invaded my spirit this morning. Blood sugar. Morning meds. Breakfast. Wash-up. This too shall pass. This too shall pass. This too shall pass. This too shall pass. My mind unconsciously chanted as my hands moved by muscle memory.
“What’s wrong, Alice?”, the words cut through my repetitive thoughts. To my shock and horror, I felt tears well up in my eyes.
“Nothing. Everything. I can’t really tell at the moment.”, I answered honestly.
“Oh. I have days like that.”, my client replied. And suddenly I felt a little better. Suddenly I felt less alone with my troubles and I was able to regroup.
We caregivers have to compartmentalize so much. It’s just part of the gig. Our client’s and residents have so much to deal with we never want to add to their troubles by carrying our own into the work place. Leave it at the door. It’s hard for me to shut that off sometimes; that dissection of my own emotions in order to function better for those around me…that minimization of my own concerns.
It’s been a process for me to learn how and when to let down those walls and sometimes I still miss the mark. Still, today my client showed me that it was nice for her to be reminded that she wasn’t just being helped and comforted. She was able to help and comfort me as well.
Learning to Let Go
There are some aspects of this field with which I will never be comfortable. Being covered occasionally in body fluids is a cake walk, long shifts are usually no big deal. I quickly learned to adjust my pace and tone of voice to those in my care. I absolutely love working with people from all walks of life to solve every day problems, big or small. After nearly a decade, even death itself has lost its bite. I don’t mean to imply that such events are always easy to cope with or don’t come with pain. It’s just that after a certain amount of time in our work, death becomes the natural end of a journey we began together. For the most part, we caregivers enter our clients’ and residents’ world in the last chapter of their lives. Death is not an event over which we have any control. Leaving is.
Lately, I’ve been considering making a change. It isn’t that I don’t love the family in my care and it isn’t the money. I’ve enjoyed this sojourn into private care and my understanding of what it means to be a caregiver has deepened because of it, but now I want to explore new avenues and branch out. There is a new facility in town that has been designed by women who worked for years in this broken system and decided to do something about it. Person centered plans, amazing caregiver/resident ratio, beautiful grounds and owners who understand what is important from personal experience in the field. How could I NOT want to check out the possibilities?
Like so many of the most important opportunities in my life, this information landed in my lap. The timing was providential. I had just taken a short break in the middle of a particularly difficult shift and was contemplating how much I missed working in a facility when a text came from a friend of mine describing this new place. Alice! It’s a perfect fit for you! You HAVE to apply.
And then came the rush of excitement, immediately followed by the crash of guilt. How can I leave my client? How can I leave the whole family that both trust and depend on me? Such thoughts have always been a weakness of mine. On one level, they motivate me to give my all to my clients and residents regardless of where I may work. On the other hand, they prevent me from moving forward.
Caretaker personality, co-dependent tendencies, avoidance of conflict, fear of letting people down, lousy boundary setting skills. I get it. I have all the ingredients for that gigantic tossed salad of crazy, but I successfully work through such traits in a manner that promotes a healthy and vibrant life in most areas. They do pop up in my line of work, though. Especially when I’m considering change. Such complex emotions come from a good and genuine place within my heart. It’s those same feelings that motivate me to do my very best in every way that I can to improve the lives of others. It stems from empathy. It’s only when I let those instincts go awry that I become the master of my own misery.
The truth is I know change is not only inevitable but it’s also healthy. On an intellectual level, I am aware that the world won’t stop spinning because I consider other avenues in caregiving. Both my client and her family survived long before I got there and they will survive after I leave. And I haven’t even APPLIED for the facility yet. I’m putting the cart before the horse, here. I get that…Still. It’s a difficult thing to let go once the bond is formed between a caregiver/client. It SHOULD be difficult. If it were easy for me to walk away; if I could just brush off someone who has trusted and depended on me for over a year without flinching then I’d need to reconsider why I am in this field. That’s a level of cynicism that I hope I never reach. There are some aspects of this field with which I will never be comfortable. And I am okay with that.
“Oh! I’m so sorry!”, I said to the woman behind me in line at the food court. I accidentally whacked her with my client’s folded up walker as I switched it to my other shoulder. She looked at me with pity, completely unaware of the fact that I was celebrating a personal victory.
I wasn’t certain how my first shift after this election was going to be. The result left a wound in me that seems to be incomprehensible to those who voted for our new president elect. They don’t understand that for many of us, it’s not about the man as much as it’s about what we are willing to overlook or embrace as a nation in the name of “ending corruption”. It’s the ideology that’s so painful.
Be that as it may, I had a job to do and doing it well matters a great deal to me. Still, it would be a real test. Do I love the family in my care more than I despise and fear their ideology? In this environment, would I be able to detach from my own deeply held convictions for twelve hours of non-stop coverage followed by commentary by my client and her husband? I honestly didn’t know and, for the first time in a long time, I dreaded going into work.
I took a deep breath as I stepped through the door and immediately felt a shift in my thinking. Without any effort on my part, the caregiver in me rose up and took over. Outside that house, I’m Alice, free to feel and do whatever I see fit whenever I see fit, but once I stepped through that door, I had job to do and I knew in that moment that it was well within my power to do it.
As I assisted with ADLS, prepared meds and breakfast, I listened to my client chatter happily about the election results. To my COMPLETE surprise, in that moment, I found myself grateful, not for the current state of the nation, but for a moment of genuine excitement for my client. I was happy to hear the hope in her voice without agreeing with the reasoning behind it. I was able to put that in perspective because her being happy in that moment was more important than me being right. That didn’t mean I had to sit in that house and listen to it, though.
I needed a win. I desperately needed to feel like good could be accomplished in the face of all the chaos that has taken over this country… the chaos that had taken over my mind and heart. I needed a win and my client needed an adventure. We were going to Belks! Not just any Belks, either. The big one in the mall all the way across town, where she could get her hair done before she browsed the store.
Now, this was a big undertaking. It takes about an hour and a half to gather all the necessary paraphernalia and requires several tricky transfers. From the wheelchair to the car, to the wheelchair again and then to the salon chair, hair washing chair, back to the salon chair, back to the wheelchair, back to the car and finally back to her wheelchair at the end. It means that I am carrying a walker, tote bag with emergency supplies, her purse and my purse as I push her through the mall. It is every bit as exhausting as it is gratifying for both of us. That day, it was completely worth the effort, maybe more for me than for her.
That day came with a lesson that I hope to always hold close. The best way I know to protest the unacceptable is to not allow it to rob me of who I am; to apply the very same ideals that make this election result so difficult to swallow in every walk of my life, even when it’s difficult. I’m a caregiver first. I do not get to choose who is placed in my care. I do not get to dictate their opinions. However,I do get to hold on to my own and use them to motivate me to do my utmost best for them, regardless of the circumstances. I can lead by example and hold tight to the belief that, in the end, love always wins. While I’ll admit that is far less satisfying then ranting in the comment sections of news articles, I like to think in the long term, it will be more effective.
Being an independent in-home caregiver is hard. When I was working in facilities, I thought in home care would be a cakewalk in comparison. Less physical work, a little more money and most important, plenty of one on one time…what’s the downside?
At the time I made the change, I was emotionally, physically and mentally burned out. Eight years in the same facility was enough. I had stuck it out through numerous owners, administrators and managers. For my folks, I stayed despite the abysmal wages, supply shortages and poor leadership until I realized one morning that I was sleep walking through a job that at one point I genuinely loved. It was then that I knew it was time to go. Without passion, there was little I could do to improve the situation, so when the opportunity arose, I made the leap. I didn’t consider the fact that different does not necessarily mean easier.
“This is one rabbit hole I never imagined falling through!”, I thought to myself as I pulled into work…under the confederate flag…next to a campaign sign proudly announcing support for he-who-must-not-be-named. Sigh. They know not what they do. I took a deep breath and readied myself as I unlocked the door. Nowhere in my job description does it list agreeing politically as a necessity.
Private care is a very small world. It’s just my client, her husband and I for the most part. Oh! And twelve hours of talk radio coupled with the never ending news cycle. Every hour on the hour, some group calls ranting about doomsday scenarios if a “liberal” enters the Oval Office. They are going to take down Christianity! They are helping ISIS! They are going to take your guns! Buy gold! The banks are going to crash! Blah blah blah GEORGE SOROS!…I had to google that one. The robocalls and pamphlets my folks get everyday in the mail had me half convinced he was a devil zombie monster beast. Turns out he’s a business magnate who invests and supports progressive causes. I mean, the Koch brothers do the same thing for conservatives. I never thought they were the antichrist. All of this angry and paranoid rhetoric makes me incredibly uncomfortable. The never ending phone calls and fear mongering feels very predatory. They are preying on the fear of the most vulnerable among us.
Hell, how can they NOT be uneasy? I’m a life long democrat in the prime of my life and I find myself stressed out after twelve hours of constant screaming about all the reasons we should be angry and scared. What can I expect out of my client, who is unwell and grew up with these thoughts instilled in her. I know they will be voting against their own interests out of fear, though it’s not my place to tell them so. I mainly listen to their fears, bite my tongue and try unsuccessfully to change the subject.
Still, as uncomfortable as this environment currently is for me, in many ways it’s been very beneficial. Politics aside, I love these people. They have opened up their hearts and make me feel very much a part of the family unit. They trust me and let me know in their own way that I am very valued. My client’s husband actively helps others in a variety of ways and though his occasional impatience with her disability vexes me, I have no doubt whatsoever that he loves her deeply. They have two very dedicated daughters and once a week, I cook a family dinner for everyone. The house is full of love and laughter on those days. Those are the moments that remind me that we are multi-faceted people. We needn’t define or be defined solely by our political points of view. As human beings, we are so much more dynamic than that. It’s easy to forget something so simple. It’s hard for me to see past that at times. Then I realize that I get up in arms over politics while my client handles with grace the fact that she is completely dependent on others to accomplish tasks that I take for granted every day. That puts it in perspective for me.
I will vote silently for the candidate who will do the most to protect those in my care and I will do my best to alleviate and redirect their fears. That is my role and it is so much more important than proclaiming loudly how very right I am on such issues. This election season, more than any other, compassion must trump ego. I will walk the walk and allow my vote to talk.
The water drops creep down the windows in zig-zag patterns casting shadows upon my client’s face as she stares off into the distance at whatever imagery dances within her mind. She is so very far away, though I sit beside her. The familiar, soothing scent of coffee does not comfort her today. The faint sound of political pundits yelling from her husband’s television does not irritate her today. She is here but not here.
She wants to go out, but her body doesn’t cooperate. I see her determination wither away.
Her pain is worse when the skies open up, but she won’t complain. She never does. She stares through her window at the ocean churning with a longing that goes beyond words and a hurt that is beyond my power to heal. She bites back the tears that have the audacity to reach her eyes and almost manages to hide her sad sigh. She’s a tough cookie, this friend within my care. My heart breaks for her because though I’m here, she is in her memories and I can’t be there.
She wryly calls it her anniversary. Sixteen years ago, on this day, life as she knew it changed in an instant. In a flash, everything she thought she knew about her future was gone…just gone. I can’t wrap my mind around the pain and fear she must have felt; the grief of losing all she thought she knew. Still, she never for one second gave up. She fought. She fights still. This year, the battles have gotten harder. Her tough days have gotten tougher, but onward she pushes, one foot in front of the other.
Today, she allows herself to think about what might have been. She allows herself to feel sad and angry at the hand life dealt her during the prime of her life, when she should have been enjoying the fruits of her life’s work. For just a few moments, she gives herself permission to ask “why me”.
I hear the front door open and the tiny footsteps of her three year old granddaughter run through the house. It was a surprise to have a visit so early in the day. I see my client’s eyes snap back to the present in that instant. She squeezes my hand and ruefully shrugs her shoulders as if to shake off the cobwebs of yesterday…I look out the window. It’s still raining, but there are sharp rays of sunshine breaking through the angry clouds and the ocean is no longer churning.