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 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.
I can’t make her smile. I can’t lift her spirits. She is lost in her thoughts; memories of what was and dreams of what might have been. I can’t reach her there. I don’t have the map or know the road.
The days that she allows herself to travel in that mindscape are few and for that I am grateful. It’s not a happy place and it seems to rob the present moment of all joy and the future of all potential. She doesn’t see the Christmas tree. She doesn’t see the joy she brings to others. She doesn’t see the courage she inspires in me…on those days she only sees her disability.
I can’t make her smile. And I know that I have to be okay with that. I know that we are all entitled to a tough day. It’s my job to meet people where they are at, not to force them to where I want them to be. So I bite back the questions with no answers that I instinctively want to ask. Are you ok? What’s wrong? Can I fix it? I bite back the assurances that I can solve a problem of which I have no real understanding. I do not know what it’s like for her. Not really. I can walk in her shoes only to the extent that my imagination will let me. To pretend that I have any idea of the pain she walks through every day is to dishonor the strength and courage she has within her to face it. I bite back the shallow but well intentioned platitudes that do little but make a person feel guilty for feeling bad. Let’s look at the bright side is a frothy emotional appeal that lacks the depth to be of any real help. It is condescending and dismissive. I will not rob her of her need to genuinely feel whatever she may be feeling.
I can’t lift her spirits. Today, my high energy and enthusiasm are not assets. So I do my best to tone it down as I walk her through the activities of daily living. I let it be known that I am here if she wishes to talk and it’s perfectly alright if she doesn’t. I try to focus on the tasks at hand. Check her blood sugar. Apply lotion to her legs. Separate her laundry. Defrost some chicken for dinner. I do my best to not take her husband’s occasional criticisms to heart. No, I didn’t water the Christmas tree yet. I will get to it when I get to it. No, I do not want to discuss the president-elect. I don’t say any of this out loud. On most days, such things roll off my back with an inward chuckle, but not today. My emotions, held tightly in check while on the clock, are often entwined with those in my care. If she has a tough day, I have a tough day. It’s my biggest challenge in this field. It’s also my greatest motivation. I am attached. Most days, I’m very good at compartmentalizing. Sometimes, though, the feelings alter my perspective enough to turn the day grey.
I can’t lift her spirits. Days like this make me long for my days in a facility. In facilities, if I couldn’t cheer up one resident, I always knew that the odds were I’d be able to cheer another. There was no shortage of people to help or ways to help them. In private care, there is nowhere to go. No one else to help. The powerlessness really takes an emotional toll. I work very long shifts and after several hours, I begin to feel owned by my shortcomings. Without co-workers or other residents with whom to interact, my thoughts go into a self-serving shame spiral as I revisit every decision I’ve ever made since age six, because clearly, my inability to improve this ONE day for this ONE person means that I am an utter and complete failure at life, should just crawl into a vat of Ben and Jerry’s Cherry Garcia and hang it up. But then that still small voice within my heart cuts through the chaotic noise in my head. Alice, get a grip. This is not about you. And in that moment, I recognized that truth. Everything that I value about this gig goes beyond the physical assisting with the ADL’s. It’s my ability to be a companion. It’s the way I see and value the friendship of those in my care. I would gladly share their pain if it would make it easier for them and when I am unable to ease their burden, I feel that I’m falling short. Private care allows enough downtime for my mind to grab ahold of that self doubt and run with it. Especially when my client needs a day to quietly contemplate her situation.
I can’t make her smile. I do not feel great about it and that’s okay. How I feel is nowhere near as important as what I do. Today, my job is not to lift her spirits. It is to walk with her and be supportive through her sad day, just as those closest to me walk with me and are supportive of mine. A very wise person once told me that courage is not always a shout. Sometimes it’s the small voice whispering
“We will try again tomorrow.”…that much I can do.
My eyes scanned the unfamiliar environment, quickly assessing potential pitfalls and hidden dangers. Carpet, possible fall risk. No hand rail in the bathroom. Air conditioning vent directly over the only place at the table my client’s wheel chair can fit. No other chair in which she can safely sit. Ok. A manageable if not ideal environment. I had prepared for those obstacles. Thankfully, I thought to put the commode chair in the trunk just in case. All the bases were covered and though I left exhausted at the end of the shift, my client was able to enjoy Thanksgiving at her daughter’s house surrounded by love and family.
When I was told that her daughter wanted to host Thanksgiving dinner at their house this year, I balked inside. It was a twenty mile drive into completely unknown territory and I had no idea what would be needed to keep my client as safe and comfortable as possible. People who aren’t living with or caring for those with disabilities tend to take for granted the amount of effort and time that goes on behind the scenes. This is a truth that transcends all avenues in this field. Get it done. Handle it. Make it happen.
And we do, don’t we? How often have I thought about the impossibility of a problem as I was in the middle of doing my best to solve it. Be it in homes or in facilities, uphill battles are what we do. It’s part of our job description and we don’t falter. Personal life in shambles? Worried about bills? Car troubles? We have to leave it at the door. We don’t get the luxury of falling apart. We have people who count on us.
Today, I was strongly reminded of how much that inability to fall apart has taught me. My dad had to have emergency surgery this afternoon. He is going to be okay, but he has quite the road to recovery ahead of him. I was blind-sided by this news. We all were. My dad, who is the picture of health and stands taller and stronger than most men, both physically and mentally, hit a bump and there is absolutely nothing that I can do about it. After a night of wrestling with powerlessness and fear, I woke up this morning, put on my scrubs and went to work. I don’t have the luxury to fall apart and because of that, by the simple effort of putting one foot in front of the other, I was able to regain perspective.
It isn’t a good situation but it could have been so much worse. I am powerless over his pain, but I am capable of being supportive to both him and those around him. I can offer information about self-care and I have insight that will benefit my family. All of this comes from lessons I’ve learned from the field and the unseen efforts that go on behind the scenes of what we do. Our job teaches us courage. At times, it outright demands it.
Management, regulatory agencies, even the families of those in our care are only interested in the end results; the appearance. If everything looks ok it is ok. If everything looks easy, it is easy. We caregivers know better. We are behind the scenes people, the muscle behind the movement and the heart behind the smile. What I have learned in the simple act of trying to do my best in this field has enriched my life in ways that defy reason. I didn’t want to go to work today. I wanted to hide from the world, but I went anyway. I didn’t want to write this post. I didn’t want to express my fear and vulnerability, but I wrote it anyway. That’s what we do. We tackle the task at hand and keep moving. We do not shrink from adversity and that is what makes all the difference in life.
This is not the piece I had intended to post this week. I wrote another one comparing a job description for a CNA that I saw online to the reality of all our job entails. I spent the afternoon on it and put quite a bit of energy and heart into it. I was proud of that piece. So you can imagine my horror when I somehow accidentally deleted it.
It is GONE! Nowhere to be found. As are the hours I spent writing it. It was more than the effort though. I write as I go. No rough drafts. Just an idea, a notion that I flesh out by putting pen to paper or,in this case, fingers to keyboard. I can’t go back and recapture the flow or directions of the words. It wouldn’t come out the same. And I was so upset.
Truth be told, it had been an emotional day anyway, but this was the proverbial straw that broke the overly sensitive-mildly-neurotic-camel-who-is-walking-through-some-challenging-life-circumstances back. And OH! The self indulgent weep fest that followed the moment I was alone was a sight to behold! For fifteen solid minutes I cried and felt sorry for myself; that deep cry that kids do, when the air escapes from the lungs in gasps and fluid flows freely from every orifice on your face and your nose gets all stuffy. I was not a pretty sight.
After I managed to pull myself together, the absurdity of my reaction sunk in. I deleted a blog post. I wasn’t diagnosed with cancer. For that matter, I have seen more than one person cope with such a diagnosis with more grace and dignity than I handled the loss of a bit of writing. My imaginary dog didn’t die…the fact that I have an imaginary dog is a topic for another post. My point is, it was an overreaction and caused me to pause and reflect.
I have found private care to be intensely personal. I work with one family and the shifts are long. A lot of the time in order to give care and enhance the quality of life for my client in the best possible way, I do what I can for the family unit as a whole. This can be overwhelming and often requires long periods of time in which my own emotions are compartmentalized. The pace and tone of my day is very much dependent on the mood of not only my client but also her husband. If there is conflict or frustration or anger, as there is bound to be in any relationship, I just have to work as if I don’t notice. There is nowhere to go and nothing I can say to alleviate it because it is not my place, though they treat me as one of the family. Some days, twelve hours feels like an eternity. Add to that the twenty-four hour news cycle that is constantly playing at work, a lack of sleep, a year full of major life changes and a fair amount of self doubt, its no wonder that I had my meltdown.
I am a woman who pushes through my feelings. I keep it moving and try not to let ’em see me sweat. There is work to be done in this life and I was lucky enough to get a second chance when so many do not. I don’t take that for granted. Not for a second. The flip side to that coin is that I often don’t pay attention to my own emotions. Being a caregiver feeds into the habit of putting myself on the back burner. There is a thin line between caring enough to be effective in this field and not practicing self care. After pondering this for a little while, I decided to cut myself some slack, take a deep breath and begin my post anew.
As caregivers, we work for people living with serious conditions. Every person for whom I’ve cared has taught me countless lessons in gratitude and courage and hope in the face of fear. My own petty problems seem so small and silly in comparison that I don’t even like to acknowledge them but the fact of the matter is that is unhealthy thinking. My feelings and thoughts are no less valid than anyone else’s.
Regardless of whether or not I admit it, those feelings and stresses exist and by stuffing them down, they only build up to the point where accidentally deleting a post is a disaster of cataclysmic proportions. By addressing these moments as they arise, I can better understand their underlying cause and take the appropriate actions to maintain a healthy perspective. I may never do that perfectly, but being aware of it is a good step in the right direction.
It seems like every other word out of my mouth tonight was an apology. “I’m sorry I forgot your towels.” “I’m sorry I forgot your coffee.” “I’m sorry it took me so long.” “I’m sorry, but it looks like I won’t be able to do your shower tonight.” After two years of this, I finally felt like I was starting to get the hang of things. But this particular hall was so busy that some things just slipped through the cracks.
Every time I feel like I’ve finally got things figured out, it seems like the universe drops a load of crazy in my lap. Or in this case, a week of crazy. They just filled this rehab unit up after having it closed for a few weeks due to low census, and it seems like they managed to find every demanding, picky, or needy person in town and drop them on us all at once. Everyone who works this unit knows that it’s crazy. We’re struggling to get the bare minimum done, and it’s starting to show. We’ve been asking for more help for days, but it’s not going to happen.
It’s been a while since I’ve had an assignment this busy, and it was a rough day. I forgot Mr. A’s towels and Mrs. B’s coffee. Mr. C’s wife and daughter were sitting in the hall just before dinner, watching me run my legs off and making sympathetic comments about how I needed more help. Mrs. D waited over two hours for me to be able to put her to bed, and I never did get the chance to give Mrs. E her shower. As I’m driving home, I find myself running through the day in my head, trying to pinpoint what I could have done better.
I want to tell them that I’m busy. That there are too many people. That I need more help. But I try to avoid excuses, because they don’t really change anything. For better or for worse, this is what I’m stuck with, so I’ll figure it out.
In the end, Mr. A and Mrs. B got their towels and coffee. Mr. C’s family went home and I was finally able to take care of him without someone breathing down my neck. Mrs. D got into bed, and I told Mrs. E that maybe she can request a shower tomorrow or the day after if the staff has time. The orientee from the other hall came over to help me for the last hour, and I finally got everyone into bed. The charting wasn’t finished, and I clocked out late, but that’s okay. It happens. I’ll get to try again next time.
The truth of the medical field is that it’s hard. Some days it feels like I’ve been put through the wringer and dropped on a sinking ship with a teaspoon to bail myself out. I can either sink or learn to swim very quickly. But in the end, it’s worth it. Because when I walk into a room, they smile. They ask how my weekend off was, or how my classes are going. I celebrate with them when they graduate from the wheelchair to the walker. I give them a hug goodnight and tell them I’ll see them tomorrow.
They need me. It’s terrifying to realize that these people are totally dependent on me to care for them. It’s a million times more terrifying for them. There will be good days and bad days, but I’ll figure it out, because I have to. It will still feel like things are falling down around me, but I’ll learn to be calmer and deal with it.
When I first started as an aide, it was hard for me to accept the fact that I can’t do everything. That some days I was only able to get the minimum done. I thought that I was failing, and or that there was something I was doing wrong. But eventually I realized that everyone else was in the same boat, and that we were all just doing our best within a tough system. I learned to cope by focusing on the good parts of my day, not the bad.
And there were good parts today. I was able to share a joke with Mrs. F as I readjusted her pillows and gave her something to drink. Mr. C told me that I must like my job because I’m always smiling. I was able to teach the new girl a few tricks she didn’t know. Several people asked me when I would be back. If they want me back, I must be doing all right. I’m driving home listening to a good CD, and I have the weekend off before my classes start.
So I’ll go home, go to bed, and come back next week to start all over. It will be crazy, and I’ll probably mess up a few times. But I’ll survive in the end, and I’ll find a way to make someone smile. Just as I told Mr. C, I really do like my job. And it will be okay.
Move. Please move. God help me, I don’t want to have to do this again. Alice, for the love of all that is holy, be quiet! I’m trying to get my brain to cooperate with my body.
I try not to show the frustration and pain. It isn’t her fault. Truth be told, she is the first caregiver I’ve had that has also become a friend and I told her as much, but at the moment her relentless cheeriness is not helpful. Left leg forward. Left leg forward. Come on, body! Work!
“Maybe you should sit down and we can start again?”, Alice suggests.
“NO!” The word is sharper than I intended and I see the flash of surprise cross her face. Damn.
“Ok! Well, I’ve got you and the chair is right here. You aren’t going to fall so take your time. We’ve GOT this!” She really does understand as much as someone who hasn’t had a stroke in the prime of her life can possibly understand. I keep that in mind.
It has been a rough few days for me. I’ve made my peace with living in pain but lately the level of it has really taken its toll. My pain meds don’t even take the edge off. I hate taking them. They do little to ease the suffering and I’m groggy all day. Last night, I took all three. Left leg forward. LEFT LEG FORWARD!
Finally, my rebellious leg inches up and I am able to turn enough for Alice to slide the chair under me. I relax the grip on my cane. Success. I’ll take it in whatever form it comes nowadays.
“WINNING!”, Alice shouts. I can’t help but smile. Her enthusiasm is contagious. Irritating at times, but contagious.
“I’m sorry I snapped at you.” She smiles and tells me to think nothing of it. She says I am brave. She says she knew it was a rough night when she saw all three pain pills gone and that I am perseverance personified. She says I have so many more good days ahead. She says…suddenly I feel my tears well up.
My granddaughter’s fifteenth birthday is later this week. She has no memories of me before the stroke. I can’t do all the things I want to with her. I can’t take her camping. I can’t go hiking with her. I can barely walk. In this moment, I feel so broken and powerless. So ANGRY. I sit in my wheelchair and the words spill out of me as quickly as the storm of tears. Alice sits quietly on the edge of my bed and listens. She knows it isn’t her to whom I am speaking. It is God.
I grew up on a farm with nine brothers and sisters. I worked and scraped side by side with my husband as we built a business from the ground up. I raised two girls and never strayed away from God. I thought I was past asking why this happened to me. I thought I had accepted this. I do not waste time on self-pity, but the combination of pain, lack of sleep and residual effects of my medicine have me feeling useless and vulnerable and I am suffering from an acute case of the “why me’s”.
Finally, my tears run out. It feels like hours but when I look at the clock, only ten minutes have passed. Time is funny like that. I feel a gentle pressure on my hand and look up at Alice. There is no judgement in her eyes. Only admiration. She takes a deep breath and pauses for a moment, as if to gather her thoughts.
“I don’t have the answers to your questions. I wish I did. I wish I could make that part easier for you. As much as I like to think I know it all, those questions are much bigger than I am. I do know this, though: your physical challenges make you no less of a person, much less a grandma. You can’t take her camping but you do so much more than that. You show everyone every day that obstacles, pain, and struggle need not define you. You show us all what strength, humor and faith can do. It’s been a tough week. I know that but look what you’ve accomplished for TWENTY years! Your situation would have destroyed a lesser woman, but not YOU. You live with joy and humor despite incredible difficulties. That is the definition of success. So you can’t take your granddaughter hiking…by your very example, she will learn how to live because YOU are a survivor!”
I can see she meant every word of that. Alice can be a bit of a mess, but a lack of sincerity is not one of her flaws. To my surprise, I actually feel much better after getting that out. I feel ready to face the day, good or bad.
“Ok, Alice. I don’t know about you but I could use a cup of coffee.”
She was one of the more”challenging” residents. I met her eight years ago, when I first entered the weird wild world of Long Term Care as a housekeeper. Whatever preconceived notions I may have held about nursing homes and assisted living facilities were quickly smashed as I moved from room to room, mop in hand.
I had heard rumors about the lady in room 207. She was the only resident who was allowed a pet, a mean little dog that would snap at strangers and bark CONSTANTLY. I was surprised that this was allowed. The caregivers explained that she had worn the administrator down by sheer force of will. She refused to give up her dog and management refused to give up the money that came from her living there. They turned a blind eye until the dog snipped another resident and then, with very little warning, they kicked her and her little dog out.
Fast forward three years: one whistle blowing experience, two owners and three administrators later, I was back in that same facility, this time as a caregiver with much more knowledge and experience in how the system works…there she was! Back again, with all her feistiness but without her dog.
“I remember you!”, she snapped, almost spitting the words at me.
“I remember you too”. I looked through the ADL notes: Refused shower. Refused shower. Refused shower. Two weeks straight of shower refusals.
I had just started working that particular hall…it was the assignment that no one wanted. At first, I was intimidated. Having worked mainly on the memory care unit, the idea of working with the combination of physical and mental illnesses in this group was daunting. Still, I liked a challenge and seeing a familiar face made it more comfortable. I walked into her room, sat on the edge of her bed and asked her the first question that popped in my head,
“So why do you hate showers?” She looked up in surprise as if the question had never occurred to her. She thought about that for a moment.
“I don’t”, she mumbled. Ok. We’re getting somewhere.
“I just don’t like being told what to do.”…ahhhh. That I understood. So I explained about shower schedules. She could not care less. I cajoled and pleaded and attempted to redirect to no avail. Finally, I settled for bribery. I would buy her a Dr. Pepper. With that, she cheerfully followed me to the bathroom.
She was a force of nature; a fighter who had little use for most people. Over the years, the bond we formed early on over a Dr. Pepper deepened. I knew it was she who pulled the fire alarm during a rain shower, forcing us to evacuate the entire facility when she felt she didn’t get her coffee in a timely manner. I hid my amusement as I firmly explained that this was completely unacceptable, though I never reported her for it. I didn’t have the heart. The time she snuck an entire cup of soap and dumped it in the whirlpool causing a flood of bubbles that spread from the bathroom to the hallway, the times she would “borrow” sodas from her roommate causing veritable riots…she was legendary.
When I left the facility for a job in private care, saying goodbye to her was one of the most painful moments. I told her I loved her, promised to visit and told her to not terrify the new girls. Trust was so hard for her and I knew that she felt abandoned. She told me as much. I made certain to visit as often as I could, but life gets busy. Between my new job, writing, recovery and volunteering, my visits slowed down. There are only so many hours in a day and I kept telling myself I’d visit after New Orleans, after I settle back into work, tomorrow, next week…
I got the call from a friend last week. It was unexpected. She had been sliding downhill slowly but she went into the hospital and died suddenly.
Loss is a part of our job. It isn’t easy but without an acceptance of that fact, it would be impossible for me to continue in this field. My way of coping is to remember each and every one of my folks and the impact that they made on my life. I get attached and that is what works for me. Others set strong boundaries and they are equally effective in this field. There is no one way to cope with the more difficult aspects of our work. I have found it to be an intensely personal and subjective matter. There is no wrong way to find peace in grief. Still, this one hit me hard. I thought we would have more time.
I went to visit the facility shortly afterwards. I had made the decision that any time wasted feeling guilty would be much better spent visiting my former residents. I walked in and greeted everyone and it was like coming home. Residents and staff embraced me and as I walked the halls, I listened. Everyone had a story to share about my friend in room 207. They spoke of her spirit and her fight. Funny, touching stories that spoke to her courage and refusal to simply roll over and play dead. I was filled with a sudden peace and deep gratitude. She may be gone, but it was clear that in this facility her legend will never die.
Worst case scenarios. I’m surrounded by worst case scenarios all the time…I was sitting on my porch trying to get a handle on my emotions. I was in a slump. Financially strapped, but really that was nothing new. Single. No dog. Big coffee stain on my carpet. The thing is, all of that has been true for a while and it’s never bothered me before, so why the sudden case of the dark and twisties?
I sometimes forget that caregiving takes its toll. Thirty-six people who were in my care at one point have died. I’d go to visit only to find they have passed. I understand that death is the ultimate conclusion to life and it is part of the gig but that doesn’t make it easy. Every one of them left an impact on my life.
So much of caregiving involves making the most of what is lost. We help our clients live with losses we can’t imagine for ourselves. A woman has a massive stroke in the prime of her life, a young man is hit by a car crossing the street and suffers major brain damage, Huntington’s, Parkinson’s, Alzheimer’s, people living with addiction, people living with mental disorders, all of whom have had their entire lives redefined by a disorder of some kind or simply aging. I get to know these people. It’s impossible not to form relationships when we work so closely together. It’s the two of us for twelve hours. When I worked in facilities it was the same. Sure, there were more residents, but it was the same people every shift. As caregivers, we know these people in a way that no one else does and that means we feel their losses like no one else does.
On a daily basis in this field, we face our own mortality; our “what could be’s”, our own potential cataclysmic moments. Maybe it’s because my fortieth birthday is fast approaching, maybe it’s because private care allows more time and awareness for those thoughts to creep in, maybe it’s because I danced on the line of my own doom many moons ago, but I have been keenly aware of my own powerlessness lately. I am powerless over a stroke. Can’t fix it. Can’t take away her pain. I am powerless over the aging process and other people’s choices. I am also powerless over my own future potential cataclysmic moments.
As I sat on that porch, tightly wrapped in the cocoon of my unreasonable fear, it occurred to me that my client went to bed over the moon because she was able to get a hair appointment. This woman in chronic pain with very limited mobility on her left side is SUPER EXCITED because she is going to have her hair bleached to the right shade of blonde, a four hour experience that you couldn’t pay me to endure. She takes her hair very seriously. She always has. She still does. There is something so quietly courageous about that; those small acts in defiance of pain. It’s a refusal to be owned by the hand one is dealt. They learn how to play a new hand instead. They adapt. WE adapt. And slowly I regained my perspective. I even learned something new. I am not surrounded by “worse case scenarios”. I’m surrounded by people who defy the odds in a million ways every day; people who put one foot in front of the other, no matter what, and who teach me to do the same.