Tag Archives: empathy in long-term care

Lost in Translation


Alice

“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.

The Language of Caregiving


Alice
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.

Try Again Tomorrow

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Alice

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.

Behind the Scenes

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Alice
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.

The Savvy Resident’s Guide

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Yang

Empathy is at the heart of caregiving. While the ability to understand and share the feelings of others has an intuitive element, a natural byproduct of genuine compassion, this awareness can be developed and enhanced through thought and imagination. Simply put, we can use what we know about another person to put ourselves in their shoes.

As I read through Dr. Eleanor Feldman Barbera’s nursing home primer, The Savvy Resident’s Guide, I found myself doing exactly that: imagining what it would be like to be an elder about to enter a nursing home. The book, subtitled Everything You Want to Know About Your Nursing Home Stay, But Were Afraid to Ask touches on all the basic topics, including what to expect when you first arrive, working with staff, managing medications, your relationship with medical and social work staff, dietary issues, rehab, activities, money issues and lodging complaints.

Throughout the book, “Dr. El” offers practical advice on everything from the best way to request assistance from care staff to techniques that help you stay motivated during rehab sessions to the best way to talk to your doctor. Dr. El keeps the tone light, often illustrating her points with personal interactions from her own experience. A common theme running through each chapter is that as a resident you are not powerless and that, in fact, there is a great deal that you can do to improve the quality of your experience in a nursing home. The book is an easy read, literally an easy read, with its large print format.

There is very little in The Savvy Resident’s Guide that could be considered new information for experienced caregivers. But in a way, for us at least, that’s the point. These issues are so woven into the fabric of our work experience that they become second nature to us and sometimes we lose sight of the fact that what might be obvious to us might not be as clear to someone else. A guide such as this, geared for new residents and their families, can help us become more aware of the basic kinds of information new residents need to help them cope with what can often be an overwhelming psychological adjustment.

In another way, as Dr. El invites us to in the foreword, the book helps us step into the new resident’s shoes because it reminds us of when we as caregivers were new to the system. The whirl of faces and personalities, the jargon, the strange cultural norms and customs of the facility and care unit, were all things we had to adjust to. Now, with a little imagination, we can put ourselves in the place someone who might not be feeling well to start, who perhaps has gone through a sustain period of loss and now has to adjust to this strange new world. Our empathy can begin even before the resident enters the front door.

Dr. Eleanor Feldman Barbera is an accomplished speaker and consultant with 20 years’ experience as psychologist in long-term care. Her blog, My Better Nursing Home can be read here. Dr. El is also a regular contributor to McKnight’s LTC News. The Savvy Resident’s Guide is available on Amazon as a paperback or as Kindle book here.

The Wit and Wisdom of Edison Terrell

 

buddha

 

 

Edison Terrell

Caregiver, author, and occasional contributor to this blog, Edison Terrell offers a unique perspective on caregiving and life. He is currently working on a collection of caregiver related stories and musings titled I Take My Pills with Ice Cream. Edison is a frequent poster on CNA related social media and with his blessing we are sharing a sample of his recent offerings.

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Telling people to leave work at work is stupid and futile advice in Healthcare, but it’s telling that the advice is most often given by those who have bare minimal to zero patient interaction.

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I realize now that the greatest obstacle to compassion is compartmentalization. It’s snuffed out like a candle the moment a person’s humanity is boiled away to simplified descriptors. Compassion can’t survive the process of a human being turned into a list of qualities.

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Some days my motto is “Finish strong!” Most days it’s just “Finish.”

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I think we may have lost sight of the fact that trust and scrutiny aren’t mutually exclusive. When I put on my scrubs, I expect my quality of work to be under examination, always. I expect that my team’s work is at least up to par, and that we navigate our sometimes ethically muddy road as best we can. I have a duty to my clients, my patients, my residents. Because the nature of my job gives me power over them, and power to make decisions for some of them when needed, such as when they’re extremely aggressive or can’t do things themselves. I think that with power over people comes not just a responsibility from within to do your best, but from without to analyze your behavior–in all reasonable terms–that it’s truly satisfactory. I wouldn’t wish anyone to fully trust anyone in my position to the point they turn a blind eye to what one, a few, or many are doing to bend the rules to breaking.

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Even people like me who claim to want to observe the truth as it is in all its harshness and starkness at all times, hate learning the truth and living it. It’s far easier to say “l want the truth” than it is to hear it, and most if not all people–including me–who want the truth won’t hear it the first time or even the first several times. Maybe not the first hundred times.

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Sometimes my compassion overflows to the point everything drops away and it’s just me and the person in need of me… Most times I’m groggy and hate being awake before noon.

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I think to myself “I’m not as nice as I think I am,” and feel good with that assessment, like I’ve gotten to the heart of it: I’ve pulled back the layers of ego and exposed the shit heel underneath. But it occurs to me that by doing just that I’m letting myself off the hook. I might even be using it unconsciously as a shield. So maybe framing my thoughts in different terms will help me. I can be nicer to people. They deserve my kindness and don’t deserve my meanness; I will be nicer to people.

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On the seventh day, the LTC administrator allowed her employees a 5-minute break, realizing for one sane moment she wasn’t actually God in human form. Four minutes into the break she angrily cracked the whip with a “Get back to work, slackers!” because she remembered she was actually the devil’s.

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It’s not the thought or feeling that creates the mood, but my belief and investment in it. A passing cloud is only a passing cloud, no matter how dark or fearsome.

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My client got the news that he would never walk again today. First time I’ve heard those words in real life and they struck so hard I felt them, too. This is a guy who never gives up, no matter the difficulty or how much of a pain in the ass he is. The droop in his shoulders were like a wall coming down.

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Who gets a cold in August? Healthcare people, that’s who.

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I got a call today about a potential new client from a home care agency that found me on Care. They were desperate to get someone but couldn’t match my minimum pay requirement because they “only charge the client a few dollars more an hour.” Bullshit, they bill Medicare at least $45/hour. She said she could give me 10 an hour, so I lied and said I was making 20 at my current job. She said the most she could maybe do is eleven. I waited her out. “Twelve,” she says, clearly getting annoyed. “That’s the best I can do, I don’t pay anyone that much.” I said I’d meet her Friday

That’s how my daddy taught me. Lie like a dog, cuz nobody’s first offer is gonna be what you deserve. 12 isn’t what I deserve, but it’s closer than 10. Whether I take the job or not is no consequence, the most and truly only important thing when dealing with these types is squeezing them for as much as possible.

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Every aide and PT in this place is in awe that I can work with my client almost every day. They say “How do you do it? He’s so aggravating!” And I reply “I do it so I can leave my wife something behind when he finally drives me to murder-suicide.” We both laugh at that, but I’m not sure I’m not serious.

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I think if I could ask the heart the value of this kindness or that kindness, big and small, the heart would answer that they have equal value. The ego calculates the weight of goodness but the heart perceives a million dollar donation the same way it does a few pennies.

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There’s a vast gulf between a simple job and an easy one.

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Gotta say, for a guy who recently learned he may never walk again, my client has been killing it in the gym. Privately to himself, and occasionally out loud at the end of his sessions as he collapses in his chair sweating from exertion, he tells me in a hoarse voice “I can’t believe what she said. What a discouraging notion.” But he still puts his feet on the modified exercise bike, still glances at the bars now and then from his position on the mat, and unfailingly puts everything into the workout, no matter how banal or degrading it might make him feel. This guy pushes all my buttons every day but I can’t help grudgingly admiring the guy and raving about his determination. I hope he keeps it up to the end and I get to witness one of those miracles I only see on television.

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I’m more make-believe than solid on closer inspection.

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I find sad/sappy music is the best for my drive to work. I tried my workout playlist a few times to psyche myself up but it just made me more tired. Downbeat stuff, though, paradoxically lifts my spirits. Maybe misery really does love company.

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I have this prank I do at work where I sign up for tons of doubles and extra days and shit and this one part of my brain is like “Dude, what are you doing we’re gonna have no time off!” and I’m like “Lol don’t worry about it, bro, I’m pulling a prank. I’m not actually gonna do any of these shifts.” But then the day of the shift rolls around and I realize I’m broke and need my job more than I need to sleep and I go in anyway and it turns out I was pranking myself the whole time.

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Changes that threaten me, when looked at a little more deeply, don’t actually affect me at all. Just the ideas that I hold to be me. What I want. Everything that bothers me only does so because it conflicts with an idea of the way things ought to be. But me, the closer and harder I look for me, the less I seem to exist as I believe I am. Fear is the glue that holds this false identity together, and when that fear loses its grip, so do I, and I disappear in the best way.

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Every day is another priceless lesson in patience and compassion, and I mean that sincerely.

 

The Inherent Good

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Alice

There were hair dryers and curling irons hanging from the ceiling. That was my first impression as my client and I entered the front lobby of a high end salon. With her family reunion coming up, she wanted to look her best and after five days of rain, she was more than ready to get out of the house for a bit. She had a week of poor mobility and high levels of pain because of the weather but come hell or high water, she was going to find a new beauty salon and get her hair done.
My client gets like that. Her sheer determination to achieve a goal often overrides what I think is best. Where she saw gorgeously coiffed hair teased to perfection, I saw transfers in the rain, maneuvering a completely unfamiliar environment for both of us and the potential for her feelings to be hurt like they were by her last stylist. One look at her face was all it took. Sigh. Ok. Let’s do this. So off we went! Despite the rain, her pain and the garden variety challenges, we were women on a mission and would not be deterred.
As we entered the salon, carefully maneuvering around subtly placed displays of make-up and hair supplies, I couldn’t help but be impressed by the atmosphere. There was an artsy, creative feel to the place and the front staff was energetic and engaging. It was a world away from my own regular salon, Great Clips (the price is right, so keep your fingers crossed and hope for the best).
After transferring my client into the shampoo chair, I sat down and took it all in. As I sipped on the cucumber infused water that they offered me (which is every bit as gross as it sounds), I noticed how engaged the stylists were. They were genuinely interested in what my client had to say. When her stylist heard that she used to be a cosmetology teacher, she began to ask her questions and discuss the pros and cons of the beauty field.
My client was given the princess treatment. For three hours, she was simply a former stylist who offered valuable insight and a valued customer. They did and said nothing that made her feel awkward or different from anyone else in there and it was all done with authentic enthusiasm. For three hours, my client forgot her pain and embraced being pampered and I found myself moved to tears, which I hastily wiped away lest it ruin my reputation for being a bad ass.
I write a lot about the apathy I see in this world. I write about the challenges and difficulties and need to overcome. I know all about the struggles we as caregivers face on this journey to improve this flawed and broken system and I want badly to help inspire the change in thinking that will enable these lasting improvements. All of that is hard wired in me, but I have to be honest here. It was beautiful to have this moment to write about this week. This simple, pure event that renewed my spirit and reminded me that there are people in all walks of life that are capable of seeing through the diagnosis to the person beneath. Such a simple thing, a trip to a beauty salon full of genuinely kind people, had a profound personal impact on me. In this world where kids are getting shot, the sick and elderly are so often mistreated, refugees are considered terrorist threats, racism is still a thing, people scream online about guns, and he who must not be named may become president, there are more genuinely kind people who look past the obvious than I realized. In my heartfelt zeal to fight apathy in all its forms, I sometimes forget that there are plenty of people who’s small and daily acts of kindness shout volumes about the goodness inherent in all of us. I do those people a disservice by forgetting that everyone isn’t either a hammer or a nail. To all of you quiet heroes out there, I apologize for my shortsightedness and I thank you for the reminder.

Beneath the Surface

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Alice
The longer I am in this field the more I realize that in order to truly change the culture of Long Term Care, we must change the way those who are living within the system are viewed. Regulations can be changed. Environments can be improved upon. Staffing levels can be reasonable, but until society begins to see through the physical disabilities and age to the person underneath, such changes, though important and well meaning, is like treating the symptoms rather than curing the disease. This point has become so much clearer to me since I began working in private care.
As an independent caregiver, I have the freedom to do the job as I see fit within very wide margins. Being pretty terrible at setting work boundaries, I find myself in many roles throughout each shift; CNA, housekeeper, family confidant, driver, personal shopper, cook…the list goes on and on and each shift brings new surprises. There is only one client and yet for me it’s every bit as challenging as working in a facility. Working one on one with my client has opened my eyes to how people view those living with disabilities outside of the four walls of a facility. Sometimes, it’s not very pretty.
My client loves baubles. She loves bright colors, and make up and having her hair done professionally. Her appearance matters to her. It always has. Religiously, once a month she goes to a particular salon and has her hair washed, colored and styled. She has been doing this with the same stylist for five years. Now, this particular stylist knows that my client suffered an immediate and life altering change to her health sixteen years ago. She sees the effort it takes for her to transfer from her wheelchair to the shampoo chair and back again. She knows that on my clients tougher days, when it takes all she has to get dressed, it is the idea of her beauty days that pushes her through that pain. I’ve told her that myself.
It’s a splurge. It’s not a cheap salon and this hair stylist is always tipped well. Getting beautified is one of the few good things that has remained a constant from the time before my client fell ill. It takes her more effort, but it is well worth it. So you can imagine my fury when I received a call from my co-worker informing me that this hair stylist would no longer be taking appointments from my client because she was fifteen minutes late. This hair stylist to whom my client had formed an attachment, despite what I considered to be her snarky attitude, who had NO problem gushing over her tips and taking her money, was put out. She did not bother to tell this to my client. No. She told it to my co-worker who, like myself, does not have the heart to tell her.
Look. I understand that we all have lives and a client being late for an appointment can cause inconveniences to whomever is providing a service but if you are incapable of taking on those with physical challenges, then DON’T TAKE THEM ON. When my client is going to be late for appointments, we call. After so many years, the very least she could have done was have enough respect to have a conversation with her about it.
It was such a clear example of apathy. I realize that it’s not cruelty that causes such slights, but the damage done from it is the same. It’s an example of the self-centeredness that we all have within us in one form or another. Even those who are closest to my client are subconsciously guilty of this thinking. How much is my client going to slow them down if they take her with them? Is there room in the car to pack all of her necessities? Is it worth the effort when she will be so exhausted the next day?…they see all the obstacles and none of the opportunities and in so doing, they diminish her humanity and reduce her to little more than “person with disability”.
I look at people through the lens of a caregiver. There is not a single person on the face of this earth who doesn’t have obstacles or challenges. Most have the luxury of wearing them on the inside. The downside to that is that too often, they forget those wounds exist and begin to convince themselves that they are a part of a group lucky enough to be normal. Allow me to disabuse those of you in that category of that notion. There is no normal. It’s imaginary. The only thing that separates you from those in my care is circumstance or age.
If I had to pick one lesson that I would like people to learn from my posts, it would be this: We are all human. Separating yourself from the way you view those in our care may make you feel safer or more comfortable but you do yourselves a disservice. One day, you will age out too, if you’re lucky enough to maintain your health. Ask yourself this: How would you want to be seen? As an “invalid”? A burden? As someone who has “outlived usefulness? As a bed filled to keep census up? As a cause? As part of a group to be pitied?…I wouldn’t. I would want to be seen as a person first. As Alice. And I would hope that all of those who were fighting for my rights would take the time to actually ask me my opinion of the system and what I think would be an improvement. I would hope my loved ones would see me before my disability and I would hope that an overpaid hair stylist would have the decency to tell me to my face that she no longer wants to do my hair.

It will be okay

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Rose 

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. 

Another Point of View

photo

Alice

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.”