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 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.
We all know about the many obstacles in this field. We cover these topics quite a bit on CNA edge because they’re important to acknowledge. No problem was ever solved without first bringing them to light. But I don’t want to talk about that today.
We did it! Three very important words in our work. Whether it’s spoken between co-workers after surviving an impossible shift, with a resident who finally agreed to a shower after a week of failed attempts, or a client who refuses to give up her monthly beauty treatments at the mall despite the many challenges her physical condition may present, those three words have the power to renew a commitment to persevere through obstacles on the clock and off. For me, they inspire a depth of hope that I would never have known had I not landed in this field so many years ago.
The challenges we face as caregivers can be difficult to articulate to those outside the field. For me, this causes a deep loneliness on occasion. It takes an incredible amount of physical, emotional and mental energy to do our job properly.The losses take a personal toll, regardless of whether or not we admit it to ourselves. So yes, some days produce the perfect storm of loneliness when I don’t practice self-care. But I don’t want to talk about that today, either.
“He was more talkative and happy in the last two months of his life than he had been in the last two years. I don’t know what you girls did, but my family and I will be forever grateful.” …I remember that moment with crystal clear clarity. It was four years ago around Thanksgiving. One of my residents had succumbed to a long illness. We knew it was coming, but it still seemed so…sudden. I remember feeling his death so deeply that for awhile, everything seemed tinged with grey and my passion for the job was replaced with a feeling of powerlessness over doing much good in it. After all, my best effort can’t stack up against death. Those kind and genuine words from his daughter acted like a balm, soothing my bruised heart with a timely reminder of the value in our work, not just for our residents, but for their families too. It isn’t about stopping death. It’s about improving the quality of life. It’s about being a comfort when another is in pain, not ending the pain itself. It’s about walking with others, come what may.
There is much to lament and much for which to be thankful in the life of a caregiver. Today, on the eve of Thanksgiving, I am filled with gratitude. Instead of focusing on the loss of people I grow to love, I feel the joy of walking with them through the end of their journey. Instead of griping about long hours, I will hold onto the feeling of satisfaction that comes from pushing through and the knowledge that any frustration or pain that I may feel is but a drop in the bucket to the daily struggles those who have been in my care face everyday with grace and humor. I will treasure the trust they place in me, the hope that they share and the dignity they are able to maintain in undignified situations. Today, I will hold close the solidarity I feel with my fellow caregivers and I will learn from those who walk this path with me and I will not take my life for granted. A very Happy Thanksgiving to all of you. I hope your day will be rich with blessings and your hearts have the wisdom to recognize them. May you feel the joy that is present, in the here and now more than you feel the pain of the past or the fear of the future, if only for the day. That is the greatest gift that we, as caregivers, are granted.
“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.
Ughhhhh. Five more minutes. Five more minutes. FIVE MOOOORE MINNNUTES! I think to myself as my fifth and final alarm blares, jarring me from my sleep. I look at the clock. Sigh. No more minutes. I was pushing it as it was. Three minute shower time. I throw on clothes after kind of sort of drying off and simultaneously brush my teeth, hunt a missing shoe, and grab my keys. Catching a glimpse in the mirror, I smile wryly. Good enough, I guess. I kiss my love goodbye and off I go.
Thirteen miles to empty. It’s going to have to do. I’ll make it on time but only if the bridge isn’t up. Don’t be up. Don’t be up. Don’t be up! Traffic isn’t backed up. Always a good sign. Ahhh! I breathe a sigh of relief as I see the cars flowing smoothly over the bridge. I’m going to make it.
I pull into my client’s driveway with three minutes to spare.
“Help me have patience. Help me do some good. Help me maintain my sanity”. It is my little ritual. I send that prayer out to the universe at the beginning of every shift.
I let myself in the house and start the coffee. My client is still sleeping pretty soundly, so I put out some chicken to defrost for dinner, prepare her morning meds, set up her glucometer and put the gas fireplace on low to knock out the chill in the room.
“HEY GAL!”, her husband yells down from upstairs. I make sure she’s still asleep before I go to the staircase. He forgets sometimes that he hired me as his wife’s caregiver and often monopolizes my time. Still, he means well and I don’t have the heart to tell him. I think he sometimes just wants a captive audience.
After ten minutes of listening about his knee pain, bunions,”damned liberals”, and a list of chores he expects me to do (honestly, I’m not sure how cleaning HIS bathroom became part of my job duties), I am able to make a graceful (graceful-ish) exit.
My client and her husband live in a beautiful house on the beach. It’s huge, divided into two separate living quarters, almost like separate apartments. Most of the time, when he is home, he is downstairs with my client. The upstairs is mainly for when he goes to bed. He is active and loves to be out and about, so until one or so, my client and I have the house to ourselves.
I head into her room to start the day’s routine. First, I open the blinds. Then I check to see if she took any of the three pain pills that are left by her bedside. If all three are there, we’re in for a good day. If all three are gone, it’s going to be a rough one. There are two. Could go either way. I massage her legs to get the blood flowing, apply lotion and her leg brace. The transfer from bed to chair goes smoothly and we are off to the bathroom.
We call it the bat-cave. A good chunk of our time is spent in there. I think, in part, because it is a comfort zone for her. She has a routine and deviating from it causes her unease. In the mornings, we wash her face, she takes her AM meds. She says she keeps pharmacies in business. I check her blood sugar. She handles it like a champ. 137. Not too shabby.
Dark cherry Chobani yogurt, oatmeal, half a cup of coffee with one Splenda and a dash of cream, cranberry juice over crushed ice in a tall glass. NEVER a plastic cup, which would be easier for her to manage. I’m not sure the reasoning behind that but I aim to please. Breakfast is served. I pour myself a cup of coffee, sit down beside her and we do some morning readings from her daily meditation book.
She takes her time at breakfast. It can last anywhere from one-two hours, depending on how she feels. I don’t rush her. I’m grateful that I don’t have to hurry her along. It’s one of the job perks of private care and she told me once that she hated it when people put pressure on her to speed up.
Time is a funny thing in that house, simultaneously crawling and flying, depending on the moment. Take the shower transfer, for example. I am not one to throw the word hate around. Usually, I think it’s an embellishment of mild annoyance, so you can believe me when I say that I HATE that transfer. On the BEST of days, I feel it’s a risky maneuver. The handrails are all in weird places. It’s a tiny space. It requires my client to take a step that’s about three inches and then walk backwards. To get out, she has to let go of one rail, reach her arm out and grab one outside the shower, lean forward, and step down on her good leg as I assist her on her affected side. It is the stuff of nightmares for an over-protective caregiver.
As I am independently contracted, I don’t have an agency to set work boundaries and that is not a strength of mine. Still, after nearly a year with this family, I have learned to draw a few lines in the sand…not many, but a few. It’s all about progress, right? So, back to the shower. Now, that was a conundrum. My client loves the shower. It’s every bit as much of a joy for her as it is an anxiety attack for me. I actually get her much cleaner using a Sitz bath and scrubbing her down on the shower chair than I do in that tiny shower. Still, perception is fact in this gig and a shower feels better. What’s a girl to do? Finally, an opportunity arose to address it. My client was having a tough day. Her pain level was high and her mobility wasn’t good. Still, she insisted that she could handle the shower. She asks for so little that I didn’t have the heart to tell her my misgivings. She got into the shower fairly easily. Getting out was an entirely different beast. It took over an hour and a half. We tried a variety of ways to exit that tiny tiled tomb. By the time we got out out, I was sweaty and exhausted, she was sweaty and exhausted, we were both sore and completely out of breath. It was a dumb move on my part. Though it was well intentioned, she could easily have fallen and that would have been on me and my stupid Wonder Woman complex.
Still, it opened the door to solving that problem. From calamity came opportunity!
“You know, after all that effort, you ended up messier than you were before the shower! What do you think about doing a full shower every other day so it’s not quite as hard on you?” She looked dubious at first.
“I can do a more thorough job if we wash in the bigger space. Plus, it will give you the chance to soak your feet! And the time we would spend transferring out of the shower we can spend on hair and make up! Turn those days into in-home spa treatments!”…AH-HA! Those were the magic words! I saw her eyes light up and it has been far less of a problem ever since. She still gets the full showers on her good days and on her challenging days, she gets to be spoiled like a princess, complete with a foot massage.
Today is hair washing day, so that means a full shower. I push her into the bat cave and maneuver her as close as I can to the treacherous step. The transfer goes smoothly, much to our relief and I slowly release my breath as she settles onto her chair. Now, hair washing seems simple enough. It certainly was when I worked in the facility. It’s a little different here. There are steps. And timers. And products. And then hair appliances. My client and I move seamlessly through the process. Such a difference from when I first started! I got the products confused and had no idea what “confixer” was. I still don’t, really. I call it hair cement. And wasn’t adept at curling or teasing or spraying hair. Personally, a good day is when I can find my brush. I am much more concerned with my client’s hair and appearance than my own. See, it matters to her and she thought for many years that she had to let it go. That’s also one of my favorite perks in private care. I can help her hold onto who she is underneath her disability in ways that those who aren’t in the field often overlook. I have the time to make that a priority.
12:30. We successfully made it through the shower and hair. Nine hours left in my shift. Next is her beauty regimen. I set up a variety of lotions and powders and push her close enough to reach. This process takes around an hour and she likes to do it for herself. While she’s beautifying herself, I chop potatoes to boil and mash later. I marinate the chicken and wash up the breakfast dishes. I peek in the bat cave to make sure she’s doing all right. After getting the thumbs up, I load up the laundry, run it upstairs and toss it in the wash, collect the upstairs garbage ( and the man has like twenty five tiny waste baskets filled with nothing but tissues and scary political pamphlets) and it’s back downstairs just in time to hear his truck pull up into his garage.
“The Bear’s here!”, I call out to my client. It’s our nickname for him; a nickname he likes a little too much if you ask me. Goes straight to his head.
“Hey Gal! Make me a sandwich!”, he says before going on a long rant about whatever crap he heard on conservative talk radio. Ok. I’ll make you a sandwich. But ONLY because I’m not doing anything else right this second. Not because I suck at setting work boundaries!… I think that, but I don’t say it. Light mayo. Light mustard. Two slices of cheese. One piece of Carolina Pride boiled ham Nuke it for 15 seconds. That’s the only way he will eat it. The ratio of cheese to ham is of utmost importance. He’s like the picky eater, frustrating kid I never had. All that aside, I have a fondness for him. Almost a protectiveness. He is unaware how he comes off sometimes. Besides, I had to fix my client’s lunch too and when he’s happy, she’s happy.
As he is eating his sandwich, I dress her in her favorite purple shirt and black pants, she picks out her jewelry and I push her to the table for her lunch; turkey on rye. Every day. She doesn’t like to switch it up.
I set up her afternoon meds as her hubby continues to rant. Something about Obamacare and guns. I try to keep my face neutral and decide it’s a good time to switch the clothes to the drier. Or escape. It’s a matter of perspective.
After lunch, she brushes her teeth. This is also a very specific routine. I’ll spare you the details but it takes about forty minutes. By this time it’s 3:30. I settle her into her lounge chair and turn on the Waltons.
Then it’s back to the kitchen. Wash up the lunch dishes, put the potatoes on to boil, pre-heat the oven. Run upstairs and grab the clothes from the drier and drop them in her bedroom to be folded later. Pop the chicken in the oven, turn off the potatoes and take my client to the bathroom.
“You know, Alice, when my daughter was a teenager she wanted me to buy her a KISS album for her birthday. I didn’t mind it. I didn’t tell her but it was catchy.” …my client will surprise me on a regular basis, but this takes it to a new level. I can’t stop laughing as I transfer her back to her lounge chair. It’s 5:15. I have to turn on the porch lights. Her husband is very particular about what time they come on. OK! I’ll turn on the porch lights at exactly 5:15, even though you are perfectly capable of doing so. But ONLY because I’m not doing something this second and not because I’m lousy at setting work boundaries!…I think but don’t say.
Dinner, chocolate ice cream since her sugar was good, then back to the bat cave for her teeth brushing routine, PJ’s, night time meds. I transfer her into bed, massage lotion into her legs, put on her nighttime fuzzy socks, and arrange her pillows so she’s comfortable. It’s 8:30. I make certain she can reach her pain meds, water and tissues and then I collapse in the chair beside her bed and pull Little Women from her book shelf. We’re on page 284. This book is flying by! I read to her until she falls asleep and then quietly slip out of her room. I gather my purse and keys, grab the trash and call out good bye to her husband.
“Goodnight, Gal! Thanks for all you do. Don’t know what we’d do without ya!”
As I lock the door behind me and pull the trash bin to the curb, I realize that I am exhausted…but it’s a good kind of exhaustion. The kind that comes from feeling like a job is well done.
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.