Tag Archives: lessons in long term care

Beneath the Roles We Play


Alice
Lucinda. To some, she is the manager at the super market on my corner. To others, she is the cashier, if they notice her at all. To me, she is a person with whom I interact with on a regular basis. She is a mother. She is a woman who worked from the bottom up and isn’t afraid or above hopping on a register when the store is short staffed. She is someone who managed to dig deep and find a genuine smile despite the fact that she had to show up to work after leaving the funeral of a loved one. I know this because I noticed the tracks of the tears that escaped her make up and I asked her about it. She knows my name and I know hers.
We interact with thousands of people in our lifetime. How often do we take a second to acknowledge their humanity outside of the limited role that they play in our lives? Do we see the person first or the service we expect them to provide for us,paid or otherwise?
My years as a caregiver have honed my ability to see a person beneath whatever descriptor they may hold. Quality of life is not improved by seeing a resident’s disorder before seeing them as a person. By knowing their individual personalities and preferences, I am able to provide better care and remind them that they are deeply valued as people. A person who feels worthwhile is less likely to be combative and angry. A person who knows you are a friend is more willing to trust, to be open about how they feel and less likely to feel alone and afraid. No one, myself included, wants to be seen solely as one thing. It is true on the job and it is true in the world.
Civility is slowly dying because our circles of empathy are shrinking. People view life through this filter of self. How do you and your actions affect me? We are all guilty of it. Just because I am aware of this doesn’t mean I don’t fall into that trap; that age old opera of ME ME ME ME ME when the reality is most of the time it’s not about me at all.
My work reminds me of that in thousands of ways, big and small. Those in my care manage to maintain their dignity through challenges that I can’t imagine facing. Even my most difficult and moody folks maintain the ability to occasionally laugh through constant pain. They help one another through the heartbreakingly tough days. Even those that don’t get along show each other support and notice when someone is missing from the hall. Somehow, through all of their troubles, most of them manage to smile at us and say thank you. It is impossible for me not to be humbled by that; to not strive to be just a little bit better every day at living well among other people.
We lost a resident this week. Sometimes it seems like I always see it coming but I never see it coming. I know the inevitable for the demographic with whom I work, but for me it’s always about their life. I never feel quite prepared for their death. This fellow left an impression that will stay with me for the rest of my life. A few weeks ago, I was working on his hall and saw his light on during my 2:00 AM hall check. Curious, I knocked on his door.
“Come in!”, he answered with more enthusiasm than I had at that hour. He was sitting in his recliner, listening to a book on tape as he carefully cut out a rectangle from the bottom of a square plastic cross stitch board. He had quite a stack of them piled on the side table beside him. This was no small feat as he was as close to legally blind as one could get. He explained to me that they could help the vision impaired to sign documents. Just line up the cut out rectangle above the space on which they need to sign and use the plastic as a guide for the pen. Voila! No more shaky, sloppy signatures. He asked me to hand them out to anyone I knew with poor eyesight. He went on to say that he was in a program that offered free audio books to anyone who no longer had the ability to read if I knew anyone who would be interested. I was thunderstruck with his courage. He didn’t even know he was brave and I knew instinctively that if I pointed it out, it would only make him feel uncomfortable. This was just who he was. To comment upon it as if it was an isolated event would cheapen it somehow. Still, I thought about it a lot for the next week. Here was a man who by all rights had every reason to feel sorry for himself. No one would blame him and yet there he was using his mind, creativity, compassion and his own personal struggles to make the lives of others better in a way that no one else could. It was nothing short of amazing and the fact that I was able to witness this empathy and gutsy perserverance in action was a gift that I will never take for granted. The very least I can do is get to know Lucinda; to do my best to see people beyond what roles they play in my life and what they do to me or for me. It is yet another reminder that the lessons are there. They are always there. I learn them when I become willing to see.

A Bad Case of the “Feels”

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Alice

Sometimes I have to dig deep within to find the strength to carry on. I don’t get to give up. It’s a luxury that as a caregiver…as a PERSON, I simply can not afford. It’s really a mixed blessing.
On the one hand, I have my days that I WANT to just fall apart. The tough days, when my personal life is in chaos and my client’s husband is feeling a strong need to express his political views loudly and my client is in pain that no medication can touch…those days bring a feeling of powerlessness that makes it hard for me to breathe. I feel trapped by circumstance and very very small. Emotions that I do not have the time to deal with begin to distort my perception. Those are the lonely days. The grey days that make me want to curl up into a ball of self pity and resent the world for not bending itself to my personal whims and preferences.
On the other hand, I am blessed to work with a demographic of the population who’s very existence is an education in courage. They are the definition of perseverance. My love for these people has defined and honed who I am on a deeply fundamental level. How can I feel anything but grateful when so much of my life is engaged with people who overcome obstacles and live through challenges that I can only imagine? I have a daily reminder not to mistake convenience for necessity.
I used to just brush my emotions aside. Once I got through the tough shifts and started to feel better, I didn’t see the need to think about it. It’s easy for me to focus on what I love about this gig and my own life. I would minimize my negative feelings. I’m known as “Little Miss Sunshine” for God sake! I don’t get to be sad or angry or frustrated or hurt. Those emotions are for mere mortals!
The truth of the matter is that never works. Ignoring a fact does not mean the fact does not exist. And I’ve learned slowly, through much experience that my feelings are no less valid than anyone else’s and that I matter too. If I find myself feeling like I don’t, it’s time to reflect on the reasoning behind it and make some changes.
I depend on the people who depend on me. That leads to one of two roads; co-dependency or growth. Today I choose the latter. In order to grow from others, I have to be honest with myself. I have to acknowledge my emotions, good or bad, see them for what they are and then let them go.

The Illusion of Normal

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Alice

If life has taught me anything, it is that there is far more beneath the surface than meets the eye. Most of us wear our damages and wounds on the inside where they are safely tucked away from the view of others. This allows the illusion of normality for some as they walk through their 9-5 lives, thinking and engaging on a surface level with all whom they come in contact. 

     Some people cling to that normalcy as if it were a lifeboat that will save them from the crashing waves of genuine uncertainty that threaten us all from time to time. But is it real? I mean, what IS normal, other than a setting on a drier?

      These very normal people are the ones who walk past my client and I in a store and look at her with a mixture of pity and fear, as if they very sight of a woman with obvious physical challenges reminds them that their illusion of normal can smashed in an instant. They are the same people who would pay an obligatory visit to a relative once or twice a year at the facility for which I worked and try unsuccessfully to hide their distaste for the residents that weren’t their family members. As if my people were nothing more than their diagnosis or age.

       For a long time, I felt actual rage at the short-sightedness of these normal people who are more likely to grumble about people looking for handouts when they see a homeless vet than actually consider the fact that he is a human being with a story just like the rest of us. It would ruin my peace of mind. The CALLOUSNESS of it. But then it hit me. They don’t even realize that’s what they are doing. It’s a subconscious reaction to distance themselves from such potential outcomes. They HAVE to see the sick or poor or ill or elderly as somehow lacking or broken in order to protect the mental image they have of themselves. After all, any other insight would force them to accept the fact that we are all one cataclysmic event from becoming what they most fear.

       Ah, but I know what they don’t, both through my own life experiences and those for whom I have been blessed enough to have in my care. I know that when you are forced to accept life as it is, you learn how to create a new normal. You learn how to adapt. What my residents and clients have shown me time and time again is that life is a balance. When one ability is lost, another is gained. My client lost mobility, but she gained perspective, perseverance, a higher tolerance for pain. She has a level of empathy for others that she said was a bit lacking before her health failed her and never once have I heard her say that life is not fair. Think about that. It is truly humbling.

    I have seen people in perfect health have a complete meltdown over a coupon in a grocery store. I have heard countless versions of “why me’s” from those who have all they could possibly need to be happy.  If “normal” means taking life for granted until catastrophe teaches you otherwise, I’d just as soon learn from the outcasts.

Working Outside the Box

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Alice

How does a caregiver from North Carolina who went from years of working in one facility to private care to losing her client in the span of two months end up in Long Island? Interesting story…

        I discovered fairly quickly that independent private care was quite a bit different than working for an agency. The family as a whole was much more involved with me as a caregiver than they would have been had I worked for a company. Often we ate together, I took my client out for appointments, the communication was open and honest. It really was a collaboration in order to ensure the best possible care and quality of life. And it was a success! Despite the abruptness of her passing, my client’s last days were filled with fun and family and love. She was genuinely happy and in the process the family and I became close.

         I was somewhat surprised when they approached me with the idea of going and helping them through the funeral. I had been to several funerals of my residents who had died but they were all in the same state. This was in NY. I had my doubts, but my heart said to see this through. My gut instinct said that this would be an experience that could be mutually beneficial on many levels. They needed support and I needed closure.

        “We were hoping you could stay a few weeks and help clean out her house.”…wait. What?! To be fair, they presented me with the idea before the trip up north, but it was still a daunting thought. I had heard all kinds of nightmare stories about the condition of both the house and her son who still resided there. Stories that I later found out were very true.  But they were going to pay me, which took the edge off of the panic of being suddenly unemployed and while I have no experience in cleaning out the house of a deceased person, I knew they felt at peace leaving the task to me. They knew I was trustworthy. After some quick reflection, I decided to take the leap.

        So here I am in Long Island, attempting to do tasks for which I have no framework of experience. I feel equal parts exhilarated and terrified. I have had so many opportunities these past few days to apply lessons I’ve learned in our field in an entirely different arena. Boundary setting, thinking on my feet, communication, multitasking, problem solving, empathetic support, organizing, planning, consistently scheduling tasks, people skills, negotiating behaviors with the brother, efficiency and handling unanticipated situations with solution based thinking are just a few examples of skills that I’ve been using, almost like muscle memory. This completely unexpected situation has been an incredibly clear, if somewhat extreme, example of using what we are taught in the walls of a facility outside in the world because sometimes life is every bit as surreal outside the walls of a facility as it is within them. It’s been a good reminder that sometimes, when the rug is pulled, you just have to take things on faith.