It will get better. I promise… I must have said that a hundred times to our new resident. She didn’t sleep at all. She searched for her mother, father, friend, a child and a pair of shoes that she must have left in England. She paced the floor for hours on ends. She changed her clothes eight times. She knocked on the doors of my other residents and asked me a garbled series of questions to which I had no good answers. In short, she did absolutely everything BUT sleep.
It was an unusually hectic night and by the end of the shift, I was emotionally tapped out. My new resident was so scared, hurt and anxious and eight straight hours of trying to soothe her in between my other tasks left its mark on me. In the end, I walked with her as she paced, rubbed her back when she cried, and made promises that I can’t possibly keep when she frantically asked questions based on the reality within her mind.
It will get better. I promise. I say it all the time. I redirect and calm and search for pets or loved ones that exist only in my residents’ memories. And yes, more often than not using those skills in those moments will bring a measure of short lived relief. But that doesn’t mean it will get better for them. Not in any lasting or impactful way. I can’t stop the loss of her memories. I can’t take away her confusion and unfamiliarity at her new surroundings nor the sense of abandonment and anxiety that comes from being pulled from one reality and placed into different one. I. Am. Powerless.
Normally I am good at compartmentalizing this awareness. It does no good to let those thoughts dance around in my mind. Such thinking only robs me of space in my head that is better used for what I actually can do to make life better for those in my care…normally. There are moments though when I am struck by a wave of such sadness that it robs me of my breath and I feel crushed; paralyzed by the weight of it all. Usually they hit me when I’m feeling powerless in my life outside of work or have been dabbling too long in my mind for my writing. My mind can be a fun place to be, but there are roads in there better left untraveled. The fact is, both on and off the clock, I deal with some pretty heavy shit. It’s kind of what I do. And acceptance of that, even joy in it, is so hardwired into me that I forget sometimes that it takes a toll if I’m not careful. Those short lived crashing waves of momentary despair are my wake up call. HEY ALICE! You’ve been playing too long in the deep end again! Come up for air!
So how do I stick with it and keep the faith without losing the ability to feel? Without becoming hardened? I get out of the problem as quick as I can and get back in the solution. Can I cure Alzheimer’s? No. Can I make someone living with Alzheimer’s laugh hard? More often than not. Can I force someone to get sober? No. Can I offer numbers and resources to someone who is in desperate need of help? Yes. I can do that. There are many aspects of life over which I have no power at all. Some but not all. I can DO. I can consistently and relentlessly keep moving forward. I can brighten another person’s day. I can do my job to the best of my ability. I can be kind and I can never give up. Even when it sometimes feels like the world is begging for it. That I have power over. That is my choice. Powerless and helpless are not the same thing.
This blog started with the idea that the voice and experience of caregivers has been a vital missing ingredient to the improvement of Long Term Care. A conversation about reform that doesn’t include our voice is like bread being baked without yeast.
When Bob found me on a CNA support site I had been searching for answers. For quite awhile, I had felt lost. I was appalled at how those in our care were being treated by the system as a whole. I was beyond frustrated that nothing my fellow co-workers and I said seemed to matter to those in charge. I was saddened by the fact that this was accepted as a matter of course and I was unwilling to believe that nothing could be done about any of it. By providence, fate, or incredibly good timing, I was ready to jump in when Bob explained his idea for this blog and asked me to be a part of it.
Over the last few years you have walked with us as we expressed the frustration, beauty, humor, love and loss that comes as part of the package in this field. Many of you have shared your experiences with us in the comments or emails. I had no idea how far reaching this blog would be or how much I personally would be affected by writing for it. I did not realize at the time that by simply writing a post a week not only would I be an active part of the solution and have the ability to reach others, but I would be opening a door to allow all of you to reach me.
You…yes YOU, reading this, give me hope. You aren’t sleep walking through life telling yourself that one person can’t make a difference so why bother trying. Instead you are reading a blog that’s very existence proves otherwise. It is an incredibly inspiring and deeply moving experience to be a part of CNA edge. In the process I have learned that I am not alone, that we can and are making a difference and that we all have a responsibility to keep speaking our truths, even when we feel it falls on deaf ears.
If you are reading this, you have impacted my life. You inspire me. Writing these pieces force me to look beneath the surface to the deeper essential realities in this field, to dig deep, be honest about my emotions and fears and face them head on. I can never give up because of you. You force me to be brave because how can I ask you to be willing to take a stand and consistently work for change on every level of this field if I am not doing so myself? How can I expect you to believe that you can make a difference if I don’t believe it myself? What experience is more rewarding than to inspire and be inspired? So, from the bottom of my heart, thank you.
“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.
It’s my day to post. I don’t want to write. I don’t have any words right now because I am still shell shocked from the results of the election.
This is a blog by caregivers about caregiving; about our experiences and perceptions working within a broken system. It is not based on partisan ideas or politics. I get that. Still, I have always viewed what we do through a wider lens. What am I learning and how do I apply the lessons from what we do in our work to life as a whole? I write about that often; how working in this field has enhanced my ability to connect with people from all walks of life, on and off the clock. Maybe that’s why I feel so blind-sided. Maybe that’s why I feel the need to address it here. If you, our readers, will give me the leeway to stray from our typical topics and delve a little deeper, maybe I can find the words after all.
Merriam Webster defines a caregiver as a person who provides direct care (as for children, elderly people, or the chronically ill). It’s a fairly straight forward definition. We take care of people. For me, this is who I am every bit as much as it is what I do. I don’t suppose it’s an accident that I ended up doing this for a living.
When a person is hurting, I try to ease the pain. When people are lost, I use my own experiences to show them that there is always a way out. When people are scared, I try to offer comfort. I find the reasons to laugh and when life seems dark, I whistle until it passes. It’s what I know and it was the compassion and love I was shown that pulled me from my own dark times.
I see life through stories and moments, be them my own, my friends, people for whom I’ve cared, or anyone else who has left an impact on me. I see shades of gray instead of black and white. I seek truth and solutions rather than sitting in the problem and surrounding myself with people who will validate me, but I woke up this morning unable to see past the results of this election, which I personally consider catastrophic for so many people whom I love, and my heart just breaks.
I am so sorry. I am sorry, my friends in the LGBT community. I’m sorry that you will have to walk through discrimination that was finally fading, slowly but surely. I am sorry for my friends of color and am embarrassed that the man who ran with the support of white supremacists without disavowing them in disgust is now the leader of our nation. I’m sorry to all the little girls who will be affected by the legitimizing of sexual assault and the little boys who are being shown that such thinking and behavior is just “boys being boys”. I am sorry to all of the Hispanic community who will be looked upon with suspicion simply because of their heritage. I’m sorry to Muslim Americans for being labeled as “terrorists” because of a small segment of extremists. I certainly wouldn’t want all Christians to be labeled because of the atrocities committed in Nazi Germany. I’m sorry for our veterans, those living with mental illness, the disabled, the elderly…I’m sorry to all the people who have been and will be in my care for what I fear is coming. I’m sorry to all who blindly voted against your own self interests out of fear. You will end up paying the price too, and I imagine it will be hardest on you because of your misplaced faith and misguided allegiance. I didn’t realize how far off the tracks of humanity we had flown.
I don’t know how to take care of people in such an atmosphere, but I don’t know how to give up either. Writing this seemed as good a place as any to start. Later, I will share my experience with a group of people in the hopes of reaching others in need of help. Tomorrow, I will go to work and do my very best to care for my client and her family, regardless of who they supported. I can care for them and love them without agreeing with them. If I couldn’t, I would be no different than the people who are responsible for the outcome of this election. I will tackle each task in my path to the best of my ability and try to lead by example and learn as I go. My residents and clients taught me that. My co-authors, Yang and May, show me that. All caregivers everywhere remind me of that. We work within impossible situations every single day and we do not flinch. That does not change because of election results.
“Well, this is something that I never saw coming.”, I thought to myself. I needed an immediate solution. My client’s bathroom is small, separated from the rest of her living area with a curtain to allow easy access for her wheel chair. The linen closet has one of those gold, ornate doorknobs that ends in a swirl and that swirl currently had me by my belt loop.
Think think THINK! I couldn’t reach the scissors on the sink to cut my belt loop. I couldn’t reach my client, who was standing unsteadily in front of the commode waiting to be guided down. I was stuck! Shit. I would pick today to wear these jeans.
Praying that her husband wouldn’t walk in and see through the flimsy curtain door, I did the only thing I could think to do: kicked off my converse all-stars, awkwardly climbed out of my jeans that were attached to the door and guided her down barefoot and in my undies. Let it never be said that this job does not require us to think on our feet.
The whole experience felt like it lasted an hour when in reality it was probably two minutes. After cutting my pants off of the grabby doorknob and putting them back on, I caught a glimpse of my client’s face. Utter shock. Suddenly, she was GUFFAWING! The kind of laughter that comes deep from the soul, causing her whole body to shake and tears to run down her eyes.
“You’re wearing WONDER WOMAN panties!”, she gasped, her shoulders shaking with uncontrollable laughter. That was it. I sank onto the floor as my own laughter mingled with hers. We were in hysterics. Her husband peaked in to see what was going on, saw us, rolled his eyes and left without a word. That got us started all over again.
There was a lot of laughter that shift. As the day wore on, I noticed her mobility was better, her pain level seemed more tolerable. She was engaged and curious. We went outside and sat in her garden. She gave me a recipe to try out for dinner and walked me through it, step by step. That day, she was fully present; fully in the moment.
Laughter is the best medicine, not because it physically heals but because it enriches life. It elevates the mood and in doing so has the power to alter perspective. Laughter makes the unbearable tolerable. It’s a quiet form of courage; a way of giving the finger to adversity. For me, it is an acknowledgment that joy exists in every situation, regardless of how dark it may be. Where there is humor, there is hope.
That shift was a reminder of why I love what I do…even though there are moments that I hate it. All it took was an unusual situation that required me to strip down to my skivvies and a willingness to be called Wonder Woman from now on by my client in order to renew my passion for what we do. I guess things really do happen for a reason.
The water drops creep down the windows in zig-zag patterns casting shadows upon my client’s face as she stares off into the distance at whatever imagery dances within her mind. She is so very far away, though I sit beside her. The familiar, soothing scent of coffee does not comfort her today. The faint sound of political pundits yelling from her husband’s television does not irritate her today. She is here but not here.
She wants to go out, but her body doesn’t cooperate. I see her determination wither away.
Her pain is worse when the skies open up, but she won’t complain. She never does. She stares through her window at the ocean churning with a longing that goes beyond words and a hurt that is beyond my power to heal. She bites back the tears that have the audacity to reach her eyes and almost manages to hide her sad sigh. She’s a tough cookie, this friend within my care. My heart breaks for her because though I’m here, she is in her memories and I can’t be there.
She wryly calls it her anniversary. Sixteen years ago, on this day, life as she knew it changed in an instant. In a flash, everything she thought she knew about her future was gone…just gone. I can’t wrap my mind around the pain and fear she must have felt; the grief of losing all she thought she knew. Still, she never for one second gave up. She fought. She fights still. This year, the battles have gotten harder. Her tough days have gotten tougher, but onward she pushes, one foot in front of the other.
Today, she allows herself to think about what might have been. She allows herself to feel sad and angry at the hand life dealt her during the prime of her life, when she should have been enjoying the fruits of her life’s work. For just a few moments, she gives herself permission to ask “why me”.
I hear the front door open and the tiny footsteps of her three year old granddaughter run through the house. It was a surprise to have a visit so early in the day. I see my client’s eyes snap back to the present in that instant. She squeezes my hand and ruefully shrugs her shoulders as if to shake off the cobwebs of yesterday…I look out the window. It’s still raining, but there are sharp rays of sunshine breaking through the angry clouds and the ocean is no longer churning.
The thoughts flit through my mind at a dizzying pace, a kaleidoscope of colors and frenzied impressions that dance around the idea of what could be and what already is. We are in New Orleans. The Big Easy. A city that has no shortage of whimsy and magic in its own right but to be here to present to the world our writing? To be given a platform in which we can shout our truths in the hopes of reaching others on our path to deep, meaningful and lasting change?…that’s surreal.
It wasn’t an accident that I chose “Alice” for my pseudonym. As a child, Alice in Wonderland was my least favorite fairytale. It made no sense. I much preferred Robin Hood. Now THAT was a story I could sink my teeth into. So, it came as a quite a surprise to me that after a great amount of life experience, I awoke one day in my mid thirties only to realize that my LIFE was wonderland and I am indeed Alice.
Call it fate, providence or synchronicity, I never believed it was an accident that I crossed paths with Yang and May. The odds of meeting two like minded caregivers across the country with such an amazing talent for writing and dedication to expressing truth and impacting change would be slim in any case, but the fact that we have worked together fluidly for two years without meeting one another until this week? The fact that our different styles and voices flow together in a way that is harmonious rather than clashing? The odds of us being offered such an opportunity by the Pioneer Network to speak out and reach others? No. That is more than coincidental.
Sir Arthur Conan Doyle said that if you eliminate the impossible, whatever remains, however improbable, must be the truth. The truth, as I see it, is this: We are on a path that is uniquely suited to us. We have not only the opportunity but the obligation to follow through to wherever this journey may lead and in doing so, we will impact the lives of the most vulnerable among us for the better. We will impact our OWN lives for the better and what we learn on the way will forever enrich us in ways that we cannot imagine. This I know to be true.
Lasting change may not happen on my timeframe but it does happen. I cannot properly express how grateful I am to the Pioneer Network, everyone involved and all who attended, for seeing in us the message that fits so perfectly with their vision or Yang and May for being such a vital part of my life or how much hope our collaboration has brought me these past two years. I only know that the three of us will continue to speak our truths, shouting it when necessary and as much as we can, be the voice for those locked in this deeply flawed system. We will never give up. Of that, I am absolutely certain.
As I sit outside, watching this whimsical city in all its wonders, I feel bittersweet about leaving in the morning. This conference has been the biggest and most fulfilling achievement of my life and it’s sad that it’s almost over. But in my heart of hearts I know it is but the first step of a journey that is sure to be a thousand miles and I am so excited to be a part of whatever comes next. In the meantime, we will continue to write and remind you, our readers…our friends, that each and every one of you matter and each and every one of you can and do make a difference. So don’t ever let the world convince you otherwise. Shine on, my friends!
Hope. It is the balm that heals all the wounds that life inflicts upon humanity; that we inflict upon each other and ourselves. Hope is the driving force behind life. It is what keeps us going when we want to give up. Without it, where would we be? I was thinking about that last week, when my own chips were down; how much easier it was for me to handle the chaos of a really really bad week than it once was. All because I had hope that life would once again level out.
There was a period of my life when I had lost all hope for myself. It’s such a sick feeling, that sort of despair. It sucks the life out of you, turning the air around you into heavy shades of grey that rob you of the will to put one foot in front of the other. I wasn’t living in that phase of my life. I was existing, and barely that.
I am one of the lucky ones. I pulled through and landed on my feet. With the help and support of loved ones and ongoing effort on my part, my life has completely turned around. I was given a new perspective and renewed hope.
My biggest challenge and most painful experiences have become my greatest assets in this field. It is part of why I love it. I can in all honesty tell my folks that there is no such thing as hopeless and while life may be difficult, as long as they are breathing, it is more than worth it. They are bigger than their pain. In the world of Long Term Care, liabilities become assets; our own flaws and difficulties help us relate better to those for whom we care.
My case isn’t necessarily typical, but think about it. To whom are our residents more likely to relate? Those who sit in an office or have fewer obstacles, emotionally or financially or those of us who know what it is to struggle on a daily basis just to make ends meet?
Though it not possible to fully walk in another’s shoes, embracing the lessons we have learned by walking through our own pain can help us relate to our residents and, in doing so, help them lower their guard enough for us, as caregivers, to truly get to know them and vice versa.
To me, that is the real art in caregiving. Anyone can learn how to perform skills, but the gift of KNOWING people; of seeing past the obvious is at the heart of what we do. The best CNA’s I have worked with have all had a story, a struggle, a dynamic history that has made them especially gifted at this job.
We are given the unique opportunity to not only embrace our flaws, pain, losses, and obstacles but to put them to the best possible use, helping other human beings. What we do is real; it’s not about what looks good on paper. It’s about convincing a resident who is in great emotional pain to eat. It’s about listening when a resident is afraid or feels alone or is angry and attempting to understand the underlying cause of their pain in order to help ease it as much as we can in our capacity as caregivers. Who better to show our residents the light in the dark than those of us who are walking with them through it? So I say EMBRACE your flaws! Be grateful for the WORST of your experiences. Hold your past mistakes and the lessons you’ve learned from them close! Remember your tragedies while being mindful of the fact that you survived them. They make us more qualified to help those who are currently living through their own.