Category Archives: Alice

Everything is Amazing

 

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Alice

      I don’t know how to live my life right now. EVERYTHING seems new. Opportunities abound and I feel such a potential for life’s possibilities. I started writing for this blog because I didn’t think it was ok for the system to collectively mistreat the most vulnerable among us and blowing the whistle on one facility did not have the effect I had hoped. Maybe it was providence that brought Yang, May and I together. Maybe it was Carl Jung’s theory of synchronicity or meaningful coincidence. I don’t know. I only know that for me, this continuing journey has become one of the most important, most valuable of my life. This opportunity that has allowed me to be part of a creative solution and concrete change. Together, the three of us get to reach others and express ideas that have long been buried under the false notion that caregivers and by proxy, those within our care are unworthy of being heard. 

    All I have ever wanted out of my life is to leave an impact that makes this world a little better than it was before I entered it. I get to be a part of this amazing adventure with Yang and May and with all of you, our readers. What could be better than that? Add to that a blossoming relationship with a long lost love, the opportunity to help a new group of young women new to recovery, and public speaking in New Orleans, and suddenly my life is unrecognizable.

      Everything is amazing but with that comes the fear and self-doubt that always accompanies the unfamiliar for me. That’s okay too. It is in such moments that true growth occurs. While part of me wishes I could feel nothing but the good stuff, I know that there is no honesty in that.

      Today, I am willing to feel and face my fears in order to embrace life’s potential and grow from the authenticity of those feelings. I don’t know how to live my life right now. EVERYTHING is unfamiliar and that is amazing and knowing that is enough.

The Magic of the Cinema

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Alice

I glanced at my client out of the corner of my eye. The lights danced across her face in a myriad of shapes and colors as her eyes widened with delight at non-stop action and shattering explosions that filled the movie screen. I sat back in my chair feeling a very deep sense of satisfaction.

      For two weeks, she had been talking about taking her granddaughter to the movies. Specifically, Independence Day Resurgence. I knew that her granddaughter would be there all day because the three of us had worked it out so they would spend at least one day a week together in the summer. To watch them both eagerly plan and anticipate our weekly “Girl’s Day” has reignited a love for what I do and opened my mind to the joys of private care. It has given me a new angle from which to view it and it has been amazing to see them bond and laugh and grow together over the weeks

       Still, the idea of packing the necessities, preparing for the excursion, transferring my client into her car, loading her wheelchair, leg pegs, seat cushion, back pillow and granddaughter into her Buick driving there and unloading it all again was…well, daunting. Not to mention making sure we find seats and it’s wheelchair accessible and that she would be warm and comfortable as possible…and…and…and.  But this was something she had her heart set on and I was going to give it my best shot.

       The movie started at 3:50. By 2:30, we were done with lunch and meds and I had the car packed and ready. Her husband told me many times over the past two weeks not to get my hopes up. Or hers, for that matter. He didn’t think we would be able to pull off such an adventure. He called it her “flights of fancy.” That only made us more determined.

        Just as we were getting ready to leave, the sky lit up with lightening as a sudden summer storm decided that it was the perfect moment to unleash the fury of the gods. WE WERE NOT TO BE DETERRED! Her granddaughter ran back into the house and grabbed a hat and umbrella, I transferred my client into the car and we were off!

     We made it in time, found our seats and even had time to get snacks. My client hadn’t been to a movie in over ten years. It was loud. The lights were bright and we agreed that the movie was somewhat of a let down and you know what? She loved every single second of it. So did her granddaughter…so did I. The whole day reminded me of a very simple truth: you never know if something is possible if you’re not willing to give it a shot.  She later told me that she felt truly normal for the first time in years because of that trip to an overrated movie. I thought about that for a second and then I replied,

     “But you AREN’T normal. You are extraordinary.” 

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.

Just a Perfect Day

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Alice

Ah, the Family Guy. I love that show. I can put it on after a long shift and all is right with the world. It’s not everyone’s cup of tea, though, so you can imagine my surprise when I heard the opening tune through the door in the bathroom as I was getting my client dressed. Well, this should be interesting. My client’s fourteen year old granddaughter was over for the day. I couldn’t be happier about that. It’s something that I had been pushing for behind the scenes for a while now. I thought it would be good for them both. 

    One of the benefits of being an independent caregiver in a family’s home is that I have much more influence than I did in a facility. This comes with a lot of stressors and frustrations that I will save for another post, but it also puts me in a unique position to do some good. So it was GIRL’S DAY! And the kid was watching old episodes of the family guy. How this would gel with my client’s ultra-conservative views, I could not say, but hey, at least we were all together. 

     I pushed my client to the living room and positioned her in her lounge chair. We had plans to go to the movies, but her level of pain and the weather did not cooperate so we had to come up with a new game plan. In the meantime, Stewie was beating up Brian. 

      “Why is that baby beating up a dog?” she asked.

       “He owes him money!” her granddaughter replied. I knew this episode well. Time to redirect a little. My client’s social morays may not be able to handle the family guy for very long. 

    A self-described “emo kid”, the granddaughter was absolutely beautiful, though she didn’t realize it. Her hair was so rock and roll, that if I could pull it off at forty, I totally would. She’s a creative, sensitive, interesting kid trapped in that unforgiving age of fourteen. I hated fourteen and after knowing her for ten minutes, I felt a real kinship.

     As the day went on, I realized that this was not only about my client. Her granddaughter was enjoying it every bit as much as she was. So was I, for that matter! All of our plans fell through, so we rented a movie on TV and ordered a pizza. Because it was just the three of us, both granddaughter and grandma opened up to each other in ways that they may not have been able to otherwise. I reached into my bag of things that I don’t know about and listened enthusiastically as they both eagerly shared make-up tips that I would most likely never use. We had fun. In this field, it was as close to a perfect day as we can get. 

     I grew up with that bond with my Grandma. It is one of the richest and most meaningful connections in my life. So much of who I am is because of her so to see that bond begin in others…I can’t put into words how incredibly important to me that moment was. It was beautiful.

     By the end of the day, we all made a plan for her to come over every Tuesday she has free this summer. We brainstormed ideas for outings and the joy was contagious. This. THIS is why I do what I do. As caregivers, we get to be a part of these moments and we know that they are far from inconsequential. There is a lot of shit, both literally and metaphorically, that comes with this gig. Ah but the moments when I get to know that I had a hand in directly impacting another’s day for the better? So worth it! We get to lift people up. We get to fight for something bigger than ourselves. We get to have our lives impacted by others…what’s BETTER than that? It really is a hell of a job perk.

The Life Coach

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Alice

“I wish I could run around with my grandkids,” my client said wistfully, “I feel like half a Grandma.” I sighed to myself. It isn’t the first time she’s mentioned such things. I wish I could help my husband clean out the store. I wish I wasn’t such an ordeal to everyone. I wish…I wish.  It made me so sad! What could I say to any of that? Sure, I could be a supportive listener. People say that’s helpful. I get that. I do!…but I’m wired to try and solve problems and I couldn’t shake the idea that I wasn’t quite as powerless to help as I thought I was.x

       So I went home and obsessed about it, as I am prone to do. After about an hour of over complicating a fairly simple problem, I had a EUREKA! moment. HAIR! I know absolutely nothing about hair. I’m lucky if mine meets a hairbrush every other day. I know nothing about a LOT of things! Fashion! Apparently my Blossom hat is no longer en vogue. Who knew?! I’ll tell you who knew! My client! She taught cosmetology! She raised two daughters and has an eye for fashion! My limited cooking abilities give me ample opportunity to ask for recipes! She loves to read and could quote Shakespeare. THIS was what I need to be focusing on! Instead of feeling sad for her, I needed to remind her of all the things she could still do, not with words but with action! 

     The next day, I pulled up a chair as she ate breakfast. I looked her straight in the eyes and said with complete honesty, “My life has gone nuts! I’m going to New Orleans for a once in a life time opportunity, I’m on a big writing kick, I’m learning water colors, my paintings are hanging in a coffee shop, I drove back and forth to Long Island twice this year, walls that I spent years building have melted in a matter of days by the person who motivated me to build them in the first place, and I don’t know how to cook a steak. Most of that is amazing but it’s all overwhelming. You are now officially my life coach.”

       She recognized the honesty and knew immediately that I wasn’t being condescending. I could see her eyes light up as we looked at pictures of dresses and discussed what would be appropriate for public speaking. I asked her for recipes. I sought her guidance. I watched and listened and learned. It was mutually beneficial. That shift, she wasn’t my client. She wasn’t her diagnosis. She was the teacher and I was the student. By stepping out of my comfort zone, embracing my own vulnerabilities, and expressing my flaws and fears, I gave her the opportunity to be genuinely helpful and I gave myself the opportunity to gain some clarity. Such a simple solution. Living with purpose and feeling useful are basic human needs. Sometimes we all need to be reminded that we are here for a reason.

The Deadly Illusion of Difference

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Alice

  I had several ideas floating around my somewhat addled brain for this week’s post. I have started this piece three different times on three different topics. Then I stopped. I stopped because I am broken hearted. I am angry and disillusioned. I am heartsick. Forty-nine people dead. Someone’s son. Someone’s daughter. Someone’s friend. Shot down. Their lives gone in an instant with no acknowledgement that they are a member of the very same species as the killer himself.

      Again, the nation mourns. Again Facebook pictures change and memes calling for unity and peace and prayers in the face of this tragedy are everywhere, quickly followed up with statements of why and how such atrocities continue to occur. It’s the guns! It’s the terrorists! It’s the homophobia! And these statements become angry and fuel the fire as anonymous people spit their one-sided solutions to a complex problem that happens over and over and over again. 

     The more I ponder it, the more certain I become that the root of the problem is simply that we dehumanize anyone who is different from ourselves. It’s in the rhetoric we use. It’s in the angry and dismissive thinking that is based solely in proving that one is right rather than seeking truths. Read the comments on a news story some time. It’s scary. The anger and ad hominem attacks from every side are appalling and anonymity gives people a false sense of courage that apparently leads them to behave like a pack of rabid wolves.

       But Alice, you may be thinking, isn’t this a blog about Long Term Care? How does any of this apply? I have witnessed that same dehumanization on a smaller stage every day in this field. The slow tearing away of the heart and soul of the sick and elderly in the system until all that is left is their diagnosis. They are dismissed. We, as their caregivers, are dismissed. That is how the dangerous flaws and cracks in the very system that is designed to protect them flourish. That is why society never really thinks about that particular demographic until they see some vague story on the news about elder abuse. Only THEN do they rouse themselves from apathy and express outrage but it’s always focused at the incident and never at the system that produced it. They do not see until their hand is forced and then they only see the end result rather than the causes. 

      The more society embraces this insanity, the more of these atrocities we will face. This idea that if people think, look, live, pray, believe or appear differently than you do, then they are not only wrong, but evil, or stupid or somehow less human is going to eventually lead to the destruction of the best of us. When will we realize that it shouldn’t take a tragedy to remind us of our humanity? How many more people have to die before we learn how to truly live?

The Big Picture

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Alice

  See past the disorders. See past the challenges. See past the constant reminder of our own mortality. Look beyond the dysfunction of the broken system and the day to day gripes we all face in this field. Look beyond the bad mood of that one particular resident who seems to have it in for you for no reason at all. Work around the apathetic owners of these facilities and you will learn some truths about yourself as a person through your work as a caregiver.

       We can’t fix the broken or heal the sick, but we can comfort the hurting and add a spark for another going through a day of despair. We can support and teach each other in a system that fails us in that area so often. We can reach people when we look beyond the surface. When we do not allow how we are viewed by others to define us; when we refuse to do the bare minimum in our workplaces, we set the example. We set the standard. The powers that be do not understand the nature of our work. They don’t know and many don’t care. They want the most cost efficient option and are willing to sacrifice standards of care in order to increase profit margin. I get it. They view it as a business, but they are not selling shoes and burying our collective heads in the sand is not going to work.

       Are we going to accept this? Are we going to allow those within our care to be forced to settle for apathy and neglect? Are we going to allow this system that is designed to fail convince us that we are disposable and worth very little? We have choices here. We have numbers and we have a voice. We have to stop getting stuck in the minor irritations that so often distract us from the essential truths that all caregivers share: we are the protectors. We are the comforters. We are the voice of the most vulnerable among us. That is a sacred responsibility and that doesn’t change because it goes unappreciated or noticed by others. If we embrace this, if we are motivated by this consistently, then together we have the opportunity to fight for the changes that only us and those in our care really know are needed. We need to collectively look at the big picture and then get on with the business of doing what we can to improve it. It’s in our hands.

The Simple Things

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Alice

How many moments do we waste away worrying? How much time is wiled away as we stew and fret over missed opportunities? How much of our lives do we willingly hand over to resentments and anger and fear?

The people for whom I have cared throughout the years remind me of that in a million ways, both with words and by action. Many of them have survived cataclysmic events that forced them to redefine what exactly it is to live, and yet the sheer joy they derive from the simplest things is truly a sight to behold. It humbles me.

The scent of freshly brewed coffee, the comfort of a familiar routine, a well-timed joke, a large bowl of ice cream, a certain song; the small, simple joys that I so often take for granted transcend those in my care from their current situation to the time “before”. 

They don’t know they’re brave, but I know. I see it. I see it in their strength to live and love and embrace what moments bring them happiness in the face of overwhelming challenges. How could I NOT be changed by such quiet courage? How could I NOT be motivated to embrace my own moments? They inspire me. I’m slowly learning how to get out of my own way. I have a daily reminder to never take the moments for granted and that life is for living and to not waste my time with regrets. That is a hell of a job perk.

The Rant

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Alice

  “Did you SEE him? Every day, he stands in the middle of the road asking for a handout”… I was standing in line at the grocery store trying desperately to mind my own business. I mean, I was REALLY trying, here. 

       I have discovered that because I have to remain so compartmentalized emotionally in private care in order to effectively do my job, I have lost what little ability I had to restrain myself from speaking my thoughts off the clock…it’s caused me a few wrinkles so I’ve been working on it with relatively little success.

     “Probably going to use it on drugs. You know how those people are.” That is it. This is a person, a human being with a story and life experiences and challenges these judgmental, thoughtless and mean spirited ladies could not imagine.

       I happened to know the man in the road. At one point, he was one of my residents. He did have a drug problem. He was also a veteran who was living with a variety of mental and emotional disorders. He was also a father. At one point, he was a husband. And someone’s son. These women didn’t see that. It didn’t even cross their minds as they mindlessly mimicked the sound bites that are played over and over again on the air waves, ad nauseam. 

    And really, even if he wasn’t all of those things, how about showing just a little compassion for another human being who is clearly suffering? If they didn’t want to give him any money, that’s their business but was it necessary to demean him loudly enough for me to hear in a public setting?! What could they possibly gain from that other than a misplaced sense of moral superiority?

      May’s post this week was spot on. As caregivers, we are so often surrounded by worst case scenarios. We are surrounded by people whose bodies and minds and experiences have been dramatically altered in some way at a point in their lives. We face our own “what ifs” every single day. That gives us a unique opportunity to learn from these survivors and empower them. Through our actions and care, it is possible to teach others who have given up that life is worthwhile and trusting one another is worth the risk of disappointment. Our clients have no choice but to trust us to help them. They are forced, by necessity, to be in vulnerable positions. In order to make them feel as comfortable as possible, I share my own vulnerabilities. It’s been a great help. That was not on the test. Like May, the most important, beneficial, and enjoyable parts of this job I learned by doing; by trial and error. None of it was necessary for certification. 

    To do this job well, it’s necessary to reach far above the standards set by the state’s certification requirements. We work with a challenging and varied demographic and our abilities need to adapt and grow as we go. What we learn and pass on is so much bigger than what is on the skills test. 

   More than anything else, this work has taught me how to see beyond the surface; to look through the scars and damage to the person underneath and to remind them why they are beautiful.  After working a very long shift, this was a lesson that I was more than happy to share with the loud, obnoxious shoppers in front of me.

      “Wow.” 

      “Excuse me?” the lady said as her friend continued to unload her shopping cart.

       “I said wow! You must have waaaaay fewer skeletons in your closet or mistakes in your life than I do to be casting such heavy stones. And before you go off in a rage about political correctness, let me be clear. You are free to say, think, and feel whatever you want without fear of prosecution. The court of public opinion is an entirely different matter. If you don’t want to be called a jerk for being a jerk then I wouldn’t choose to stand in line with me.”…drop mic. I probably shouldn’t have done that but damn, it felt good.

More Than Meets the Eye

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Alice

  People are amazing. I forget that sometimes. It’s easy to do, especially during an election year. I’m so often tempted to retreat into cynicism when I read the paper or hear the news or go on social media. If they were to be believed, we all hate each other. Democrats, Republicans, black, gay, straight, rich, poor, young, old; we just can’t coexist peacefully anymore…except I have a largely diverse group of friends who somehow manage to not kill,  berate, lament, or hate each other over differences of opinions. They are bigger than whatever overly-simplified label is slapped on them. So I know that outside of the 24 hour news cycle, most of us are living our lives and co-existing just fine. All of that rage and animosity toward one another is a mirage, but if we aren’t careful and vigilant that mirage can easily become reality.

     My client is the sweetest woman.  Growing up on a farm taught her to put a high value on work ethic and she worked right up to the day her body failed her and her life changed dramatically in an instant. And she was so young! Barely in her fifties. Her husband also has worked his fingers to the bone his entire life. They started with very little more than wishes and the willingness to work hard and save more than they spend and that hard work coupled with some luck paid off. They have a beautiful beach front house, complete with a dock and boat.

     He could have sent her to a nursing home. He could have and it would have been understandable. Suddenly, their entire life was changed. But he didn’t. For eight years, he cared for her on his own. He had the bottom level of his house redesigned so that she could maneuver. When he could no longer care for her by herself, he hired in home caregivers. 

       Before every shift, I have to take a deep breath and leave my political opinions at the door. I know that I’m in for twelve to fourteen hours straight of conservative talk radio and quite frankly, those people scare me. They make their money by terrifying people and I have found that it is especially effective on the elderly, who tend to view the past through the lens of nostalgia. I want to tell my client that these people who you think bleed red white and blue are the very ones who want to cut funding to the programs designed to help you and others living with similar challenges. But I don’t. I smile and nod and don’t mention how I think fear and insanity are the conductors on this crazy train campaign season.

      It occurred to me recently that there was a time not too long ago, that I would pass a house like that with a Trump sign on the lawn and immediately assign a label and disdain to whomever may be living within the dwelling. It’s instinctual. I would recoil from meeting such people without giving a second thought about it. Backwards thinking, greedy, selfish bible thumping bigots live in such places…except didn’t that make me every bit as guilty as them? Am I an elitist, lazy, ne’er do well who just wants money from the Government and weed? Of course not, but I am a Democrat and that’s how we are painted by the talk radio hosts I have to hear all day. That’s how they paint us and that’s how we paint them and the world crumbles around us as we yell at each other.

       My client is a mother, grandmother, survivor, loves music, Little House on the Prairie and coffee and chocolate. She is delightfully funny and kind. She also happens to be a Republican. Why should her political opinion override everything else about her?  The truth is it shouldn’t. We are ALL bigger than the labels slapped upon us.

       Differences of opinions should not tear apart the very fabric of our humanity. Indeed, this nation was founded in order to allow such freedom. We are free to disagree and it’s ok to be passionate. God knows I am, but the moment we forget that we all have a story is the moment that the tail starts wagging the dog in our society. We start to think that the only way we can be right is if everyone else is wrong. Not only wrong, but dumb, mean, and evil. We lose our empathy and start treating those with differing ideas as if they aren’t even human. It’s a dangerous path to tread. So I refuse to drink the Kool-Aid. I would rather believe my own experience and insight than what other people, from both sides of the political aisle tell me to think. We do not all hate each other, no matter what they would have us believe. There’s a market for panic and anger, fear and vengeance because scared, angry people are much easier to manipulate. This campaign season is the proof in the pudding.  I’m not buying any of it.