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.
Underneath our scrubs beat hearts that celebrate each success and bleed for each loss of those within our care. We know that our time with them is limited and we can not cure them. We can’t turn back the hands of time and we can’t change the situation that led them to our care. But we walk with them. We do what we can to improve their quality of life. We tell them they are not alone. We try to coax smiles from weathered faces worn down by time and experience. We listen. We translate. And when they pass, we grieve.
Underneath our scrubs are muscles that ache from running up and down halls or up and down stairs as we do the work of three people because of short staffing. Sweat runs down our face as we prioritize needs on the spot in order to provide the best care we can in an imperfect situation. Carefully compartmentalizing the very real frustration that comes from being overworked and underpaid; constantly facing impossible situations and feeling unappreciated, as if what we do is of little value. As if we are disposable. And isn’t that how those in our care feel? Invisible? Overlooked? So we run harder. Try harder. Uphill battles become our bread and butter.
Underneath our scrubs are souls of true grit. Whatever we look like, whether we wear it on the inside or out, we do not give up. Caregiving does not stop for holidays or inclement weather. It is not nice and neat. The most important and necessary tasks fall between the lists of activities of daily living. We face our own mortality every single shift. We face worst case scenarios and see the people beneath; see the strength and courage of those living through them and their strength fuels our own.
Underneath our scrubs, we are tired. We are weary. We are disgusted with the poor pay and misunderstanding of what we do and why we do it. We are tired of being dismissed. Tired of those in our care being misunderstood and dismissed. Tired of “it looks good on paper” mentalities and tired of people with little experience on the floor and no real world knowledge of those in our care deciding what is best for them without our input. We deserve better. Our residents certainly deserve better. And until we get better, we will be relentless and consistent in speaking our truths.
“She needs to do better about taking care of her gums. You need to help her with that. And make sure she uses an electric toothbrush.”…My growing anger at this woman, whom I had to assume had advanced degrees in order to be a dentist, drowned out the rest of what she said. I had spent the last half hour listening to her lecture my client through me, as if she was completely unaware that the woman was an adult with a fully functional mind of her own. Does this dentist think that because she is in a wheelchair, my client is incapable of following simple instructions?
First, I had to battle the rush of misplaced guilt. My client has a very lengthy oral care routine that she does twice a day. It is one of the tasks that brings her comfort. I assist her as needed, but I am a firm believer in fostering independence. Second, she HATES the electric toothbrush. Third, it would take more than mildly tender gums for me to rob a woman who is in her right mind of her dignity by insisting that I do for her what she is capable of accomplishing for herself. Fourth, if a professional in the medical field cannot direct their questions to their patient simply because she is in a wheelchair, then they need to go back to school and learn the basics of human decency. I caught a good case of the mads over that day. After an entire shift of inner fuming, I realized that my frustration served no purpose and I would have to get glad in the same pants I got mad in. So when I got home, I reflected on the experience.
I think what irritates me the most about it was that it was not a unique situation. It is as if a person reaches a certain age or level of disability and suddenly they speak a different language. Administrators from my work in the facilities would talk through the caregivers to the residents all the time. Doctors, family members, friends, all well meaning but cluelessly communicating AT those living with a disability or the elderly in our care without pausing to include them. How can you ever feel comfortable when almost everyone talks at or around you? How invisible and irrelevant would you feel? I would be constantly screaming inside.
I KNOW this. It’s not an awareness that I had to learn. For whatever reason, that part of the gig comes very naturally to me. For others, they gain it on the floor or through one on one care. I have yet to meet a caregiver that doesn’t on some level feel the frustration that comes from people not listening to the voices of those within their care; from the utter lack of understanding and misconceptions that those, and often those in authority, seem to have for those whose very lives are in their hands.
Getting angry is not the way to solve a problem. Becoming aware is the key. So I put aside my anger at the dentist and really thought about how that interaction played into the big picture. When I took into account that most people are well meaning and such thoughtlessness is not done with malice, my mind kept circling around the idea of a foreign language. They simply don’t speak the language of the elderly or the disabled. We do. If I accept that as fact, then the next logical step is to realize that one of the most important roles in our work is to be translators.
After you read this, close your eyes for a moment. Imagine the most painful moment of your life, your biggest fears or parts of yourself about which you may carry embarrassment or shame. Think about your deepest insecurities and the way you secretly fear people may think of you. We all have those dark places. I’m asking you to find yours for a moment and feel the emotions that come from that…now imagine if everyone was able to see all of those wounds all the time…imagine if some people ONLY saw those wounds. Now ask yourself, how would YOU want to be seen? How would you want to be treated? As caregivers, we see beneath the service. As translators, we must teach others how to do the same.
Ah the tricks of the trade. The little tips that I have picked up over the years in this field have made such a big difference. I can change a brief without taking off a client’s pants in no time flat; up through one pants leg, down and around the shoe and back up again. Whether it is selling the idea of a shower to a resistant client, coaxing and encouraging a resident to eat, or redirecting a person living with Alzheimer’s, somewhere along the way these little tasks have become muscle memory, as familiar and comfortable as my favorite well worn scrub top. I was reflecting on that recently, how what was once so foreign has become second nature to me and I realized that what I did was learn a language. There may be any number of dialects, but in the end it is in one tongue.
My ultimate goal, regardless of where I may work, is to meet the needs and improve the quality of life for those in my care. That is the overarching ideal for which we caregivers strive. It’s one simple concept but it is very individualized and it’s success is based on knowing our residents and growing our understanding of what makes them tick. It is the language of empathy.
My client was having a rough day. She slept well and all her pain pills from the night before are still there, so I know her pain level was not the trouble. Her blood sugar was normal. Still, her appetite was down, and she wasn’t interested in going out. She wasn’t engaged. After a year of working with her, I knew that she would open up if I could just make her laugh. She has a fantastic sense of humor and that is one of the most effective tools to open the doors to communication with this particular client.
This resident feels safe on the porch. This resident prefers showers in the afternoon. This client loves enthusiasm. This client takes a while to open up because the woman who cared for her for five years moved and she is feeling uncertain. It’s the language of knowing, the language of patience and perseverance and consistency. Because I’ve had to learn these traits in order to do my job effectively, I find that I am more capable of applying them into my daily life off the clock. Because I want to maintain my ability to grow as a person and learn from my work, I have to honestly take stock of myself on a regular basis. The language of caregiving is universal, challenging and transcendental. The skills I have learned on the floor have impacted my life, relationships with others, and perspective deeply. I truly hope that never changes because I find it valuable beyond measure.
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.
“I have to stop. This is getting ridiculous.”, I thought. It was my day off and I accidentally-on-purpose stumbled into the world of online news articles…two hours earlier. It wasn’t the articles that I found so disturbingly riveting. If I had learned anything this election cycle, it was to find and get my information from legitimate and objective sources and to stay away from opinion pieces disguised as fact. No. It wasn’t the articles. It was the comments section. I had jumped down a rabbit hole into a world in which I had no business being.
The level of hostility driven by fear took my breath away. Comment after comment of anger and name calling; fully grown adults incapable of completing a thought without using expletives, their words screaming off of my computer screen. It did not matter what side of the pointless argument they took. This was equal opportunity rage and poor behavior and it fed off itself; a snowball effect of dark emotion fueled by the safety of anonymity. It was as if no one recognized that they were talking to other human beings and it is bleeding into the world beyond the World Wide Web.
That’s when it hit me. We caregivers have a unique opportunity in this climate. I know this sounds like a stretch, but follow me here for a minute. In my capacity as a caregiver, I have had clients and residents from just about every walk of life: Rich, poor, black, white, middle eastern, Mexican, gay, straight, super religious and die hard atheists; people living with a variety of physical and mental disorders and people from all sides of the political spectrum. None of that mattered. The very nature of our work depends on seeing people beneath their disorder and knowing who they are in order to provide the best quality of care. Personal disagreements on politics or religion in no way factored in and because of this I have learned from those with whom I wouldn’t ordinarily have had the opportunity to engage and have been blessed with many close friendships that often arise from the caregiver/ client relationship. I have never, not one single time viewed a client as simply one thing. I didn’t think of them as their disorder, race, religion, politics or whether or not they were private pay. I know them by their stories, by what they share with me and their personalities. We, as caregivers, do this naturally. It becomes second nature. We remind those in our care that they are human beings, first and foremost, and deserve to be treated with dignity. Imagine if we collectively used those lessons we learned from our work on every person we meet. Imagine if we could teach those lessons to others by our actions. Wouldn’t THAT be a movement worth starting!
As a society, we have to stop allowing the worst of our anger and fear to dictate our behavior. We can not allow ourselves to pigeonhole others to the point of only seeing our differences. We have to do better than this. I think those of us in the caregiving field have a responsibility now to apply our expertise to the world at large. We have a deeper calling. Today is Martin Luther King Jr. Day so I would like to end this plea with the man who said it so much better than I ever could and who backed his words with his actions:
“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”
“Faith is taking the first step even when you don’t see the whole staircase.” ”I look to a day when people will not be judged by the color of their skin, but by the content of their character.”
Throw me in the trenches. Put me in the most challenging situations; places that no one in their right mind would stay for any length of time. Throw me into a household where the family’s ideals are vastly different than my own and my client’s husband needs almost as much care as she does. Let it be a reminder to me that we are all more than one thing and I don’t pick the traits or opinions of those within my care. My job is to foster their independence, not to dictate what that should look like.
Surround me with those who have lived so long believing that they were broken that they have lost hope so that I can remind them of who they are beyond their disorder.
While it’s true that I have my moments when I wistfully wonder what it would be like to work in a well run facility where everyone is treated well from the residents on up or for an agency without the complications that arise from being an independent home caregiver solely responsible for setting my own work boundaries, I know in my heart of hearts that is not where I am meant to be…at least for now.
I cut my teeth in caregiving in a facility on which I later blew the whistle. It was there that I saw the deep flaws in the Long Term Care system. It was there that I learned the value and depth to be found in our field. It was through trying to improve that particular facility that I realized that the problems were much bigger than one place and that creating real and lasting change would be a marathon, not a sprint. It was through my journey into private care that I was forced to set work boundaries. It’s given me the freedom to really explore the depth in which good quality care can impact not just my client but also her family. There are times when the long hours in a small environment with only my client and her husband test my patience, but it has also strengthened my ability to redirect and listen on a deeper level. It has forced me to think outside of what I know in order to be a better and more effective caregiver.
The truth is I don’t want to forget. I don’t want to be so far removed from the problems that I forget why I began this journey in the first place. So, for now, I choose to stay in the trenches. It’s where I can do the most good. Some people can’t see the forest for the trees. Some can’t see the trees for the forest. I see the forest and I will spend my life in a variety of ways and levels trying to improve it, but I must never forget that it is the individual trees that make up the forest who inspired in me the will to fight in the first place.
You recognized me when I came through the door on Christmas. You saw me and knew my name and knew that I loved you. For that I am happy, because I know the time is coming when I will look wistfully back on this holiday season and be grateful that I have that memory.
A rush of emotions flooded me as I stepped into the warm and welcoming home that has been the back drop for so many moments of my life. Suddenly, I was eleven and so excited because you were moving right down the street from me! I was fifteen and sitting with you as the family walked with my uncle through his last days. You were so strong without sharp edges. I was seventeen and didn’t have a date to the prom. You told me I was beautiful. You told me to just wait, that I would grow into myself. I was nineteen and lost. There you were, with love. Always believing in me despite my very best efforts to prove to the world I was a waste of time. I was twenty-three and heartbroken. You said what was meant to be will be.
I was twenty-six and in a dark place. You were there. I was in the grips of alcoholism. I was the worst version of myself and you refused to see that. In your eyes, I was still your girl. Some would argue that you were my biggest enabler. I suppose there is truth to that but you were also my biggest supporter. You cheered for me when I had nothing for which to cheer.
We lost Pop during that time in my life. Your husband of nearly sixty years; your best friend. I couldn’t be there for you like I should have been. He didn’t get to see the woman I finally grew into. I will always regret that. You? You soldiered on, despite the overwhelming grief I know you felt.
I was thirty-two. Dying inside and out. There was nothing you could do to “fix” me. I had to get help. I had to try something different and I was so scared. You said I could do this. I was thirty three and picked up a year sober. I called you and you were so proud. I could hear it in your voice and for once I felt that I earned it. I didn’t get to see you enough but we talked on the phone so regularly that I felt you were close. I was a caregiver and you said that it was a natural fit. I blew a whistle on a facility and you were not surprised. I was writing again and you said I could do whatever I put my mind to in life.
I was thirty-five and not having luck in the dating scene. You said be patient. You said I miss you. Come visit. But I didn’t have a car at the time and my work schedule was so hectic. These things were true but I should have made a way. I could tell you were having slips in memory. You said it was the price of a long life. It didn’t seem that bad. I was thirty-six. You were dancing at my brothers wedding. I was thirty-eight and took the bus down for Thanksgiving. I noticed the difference by then.
At some point, I stopped calling to seek guidance for my life and started calling to make sure that you were alright. I can’t pinpoint when that change took place. It was a subtle thief that robbed me of my confidant, my advisor, my rock while I wasn’t paying attention. Those phone calls became more and more difficult. I could hear your loneliness and confusion. You get angry. Eight years of taking care of people professionally and I couldn’t seem to do a single thing to help the woman who has taken care of me for so much of my life.
I am forty. But in your house I am forever a little girl. You used to get better when you had family around but that time has passed. You recognize me and you know that I love you. That has to be enough now. I know that but I don’t feel that. You’re alive and yet I am grieving the moments I can never get back and regret the time that I missed. The unconditional love that you graced me with and the closeness we have always shared is irreplaceable. My life without you in it just doesn’t make sense and despite everything I’ve learned from working in this field, I can’t imagine letting go.
You’ve always been the heart of our family, the glue that holds us together. You’ve been the strength and the sounding board. You’ve raised sons into extraordinary men and have grandchildren and great-grandchildren and every one of us adore you. I will carry all of your stories and hold onto the memories for you. You are always always with me and I will try to live up to the faith you always placed in me. I will try to make you proud.
Always your little girl,
I don’t know how to make a turkey…WHAT HAVE I GOTTEN MYSELF INTO?! I carefully re-read the instructions. Add one teaspoon of all purpose flour to baking bag to prevent it from exploding. Nothing about that sentence sounded right. I had spent the last forty minutes searching my client’s cabinets for all purpose flour to no avail and it was getting dangerously down to the wire if I wanted this turkey to be cooked by the time her family came over to eat. Finally, on the bottom shelf I spied a crumpled bag covered in white powder. Fingers crossed, I pulled it from the dark recesses of the cupboard. Damn. Bread flour. Well, here’s to hoping bread flour has the turkey bag explosion prevention ingredient.
Green bean casserole, an experimental stuffing concoction, mashed potatoes, Waldorf salad…I was freaking Martha Stewart without the insider trading rap sheet. Still, I had more than one moment as I rushed between care and cooking when I realized that I had probably taken on too much of a challenge. Especially considering the fact that after work, I had a five hour road trip to see my family.
My client had a rough night of pain, but she was still determined to enjoy Christmas Eve with her family and I was damn well determined to make certain it happened for her. There was no time for exploding turkeys. The day went by in a blur. By the time I had her washed, dressed, and comfortably resting in her chair, the green bean casserole was done, potatoes peeled and boiling, and potentially deadly exploding turkey in the oven. The kitchen was covered in apple and potato peels and I was covered in whatever the hell bread flour is and seriously questioning my sanity.
Finally, everything was done. The table was set. The stockings were stuffed with odds and ends that I picked up at the grocery store the day before, the tree was glowing. By the time her family arrived, all my client’s afternoon meds were finished and she could enjoy the time completely free of worries and I was able to breathe and relax a bit.
I watched everyone enjoy the feast, surprised and grateful at the spread on the table, including the turkey that I pulled out of the oven in one piece. I watched as they opened the gifts, laughing and making a mess of the wrapping paper. I listened as my client’s three year old granddaughter explained the very important role of Elsa in the movie Frozen. I watched the first happy Christmas my client has had in years and felt great pride in being a force behind it.
There is a lot about private care that isn’t a natural fit for me. But this day…this day that took a month of behind the scenes work from the Christmas decorating to the family dinner, is why I do what we do.
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.