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Dear Readers


Alice
Dear Readers,
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.
With love,
Alice

Contempt Prior to Investigation


Alice
As a caregiver, I cut my teeth on first shift memory care. For years that was my world. Fast paced, short staffed and unpredictable, first shift was nonstop action. I remember thinking it was ridiculous that there was a pay differential for third shift. After all, there work load was so much lighter than ours. It just didn’t seem fair. I thought along the same lines about private care. One client? How hard could it be? Why were they paid so much more than those of us in facilities? Their job was a cake walk in comparison. Of course, at the time I had no experience with private care or third shift but it seemed like common sense to me. I was wrong.
Contempt prior to investigation. My thinking at the time can best be described by that simple concept. And we are all guilty of that from time to time; Viewing people, events, and moments solely through the lens of our individual perception without the benefit of direct knowledge. If the past few years have taught me anything, it is that the remedy for such thinking is actual experience.
Private care was not easy street. In many ways, it was much more challenging for me than working in a facility. Sure, I occasionally lamented the pace and amount of work we had to accomplish on first shift in my facility, but truth be told, that is when I’m at my best. It was harder for me to pull back and refocus my energy than I expected. The hours were long and it was difficult for me to set work boundaries without the guidance of an agency. It could be very lonely and at times I felt very isolated. The flow of the shift was entirely based on other people’s moods and level of pain. There were also amazing aspects of private care. I loved the family. All of them. I loved the freedom of working independently and having the time to really get to know my client. I loved being involved in bringing holidays back into the house and making her laugh. I loved the deeper connections I was able to forge because my focus wasn’t split eight ways to Sunday. That also made it very hard to leave when a new opportunity arose. My two year journey into private care has enriched my experience in this field and added skills, abilities and insight into my work that I would not have gained had I not taken that path for a little while.
Though I’ve only just begun my jaunt into third shift, I’ve already made some realizations. I understand why they offer a shift differential now. It’s true that the work load is much lighter but that is all I was right about. When I worked first shift, I ran hard. I bled for the job, but when I clocked out for the day I was able to leave work at work. For the most part, anyway. Not so on third. So much of my time in the day is spent trying to effectively work sleep into my schedule so I can be awake and alert through my shift that even when I’m not at work, I’m thinking about work. Or thinking about sleep. And everything else has to be worked in between those two things. The extra money isn’t about what happens on the clock. It’s about the willingness to rearrange life off the clock in order to work when the worlds asleep. It’s about the toll that takes on your mind and body. Sad to say, I would not have connected the dots on that had I never taken this position.
So I am very glad my experience in this field has evolved and hope it will continue to do so. These experiences will remind me not to engage in the “shift wars”. We do not need to tear each other down, ESPECIALLY without having the first clue as to what it’s like from first hand experience. I consider it a lesson well learned.

Through the Cracks


Alice
I stared numbly at the words that my mind refused to comprehend. Missing man, thirty, found dead in the creek wearing only his underwear. He was just a kid. And suddenly I was filled with such a moment of fury and heartbreak that it took all that I had in me not to pick up the nearest item and throw it through the window. HE WAS JUST A KID!
People who make snap judgements will look at the grainy photo that went along with the article and make false and hurtful assumptions. Probably another junkie. One less drain on the system. He must have been doing something…and then dismiss it from their minds. In that moment I was filled with a rage that such people cast down opinions from the lofty heights of their moral smugness without knowing the first thing about the person or his story.
He was one of my residents several years ago. I remember how shocked I was that someone in his early twenties and physically healthy landed in an assisted living facility. His roommate was more than fifty years older than him and unwell. I thought that there must be a better place for him, more suited to his needs. A safe place where he can be around people his own age with similar challenges and make friends and have a better quality of life. I didn’t consider at the time that deep cuts to the mental health care budget robbed him and many others like him of a better option. There are no long term treatment centers for those living with mental disabilities. He never complained, though. Never once did I hear him say a negative thing about anyone or anything.
He had the mind of a child, but he also had the heart of a child. He was a big guy. To look at him, you wouldn’t think he was so gentle a spirit. You wouldn’t know that he was the first one to help a feisty old lady get down the hall in her wheelchair; just about the only person she would LET help her. You wouldn’t know that he’d give the shirt off his back to a friend. I used to worry about him being taken advantage of by some of my other residents until I realized how much he got from being able to help another. He was kind and he was lonely but he had a good sense of humor and the moments I could coax a smile from him reminded me why I was in this field.
And then one day he was gone. People move from facility to facility or back home to their family with little to no warning. I’ve gotten used to quick adjustments. Old residents move and new ones show up just as suddenly. I didn’t see him for a few years after that, but everyone who has ever been in my care has left an imprint in my life and every now and then I would wonder how he was getting along. Then one day last year, I saw for myself.
On sat nights, I volunteer at a behavioral health center. And there he was! In the support group! Now, the meeting I bring in is completely voluntary so I always feel hopeful when the clients in that short term center choose to come to it. I’m able to offer some numbers and resources that can get them on a path to wellness at least. I feel like I can bring them a little hope, but if I am being honest with myself, I could tell he was not looking so good. He was every bit as kind in that setting as he was when he was living at the facility… but his smile seemed haunted, his eyes looked sad and he appeared way too thin. After the meeting, I gave him a gigantic hug and told him to take care of himself. To talk to his case manager. That I loved him to pieces and that everybody missed him. He smiled and waved as he walked back to his unit. I wish I had taken five minutes to get him some phone numbers. He didn’t ask for any and maybe he wouldn’t have used them if I had, but I wish I tried.
That was the last time I saw him alive.
I want to tell him I’m sorry. I am so sorry that you died in such a way. You deserved so much better. I’m sorry that people failed you and had failed you most of your life. I’m sorry you weren’t protected the way you should have been or encouraged and given the opportunities that so many take for granted. I’m sorry I rushed out after that meeting rather than stay and talk with you for a few more minutes. I’m sorry that cuts to mental health funding and Goddamn politics played a part in the untimely death of such a good kid. I’m sorry there was no one to whom you could reach out and that you fell through the cracks of the systems designed to protect you time and time and time again. I hope part of you knew that you were not alone. I will not forget you, my friend.

Claire’s Training Exercises

 

Bob Goddard

As I shared in my last post, our granddaughter, Claire, was born without the fibers that connect the two sides of her brain. This birth defect, called Agenesis of the Corpus Callosum (ACC), has resulted in delays in all major categories of Claire’s development.

For the past few months, we’ve been meeting every Friday with an Occupational Therapist from a program called Early On.  During these in-home sessions, we track Claire progress and work with her on developing her gross motor, fine motor, cognitive, and social skills. In the process, the OTR has instructed us in a number of training exercises that address Claire’s deficits. This early training is crucial in Claire’s treatment and it could have a significant impact on the quality of her life. I’ll have more to say about the Early On program in future posts.

For now, I simply want to list some of the exercises we’ve been doing, just to provide an idea what of the training involves. Claire is weak on her right side and she has a tendency to arch her back as means of movement. If not addressed, these issues could result in major physical problems down the road and much of what we do is to correct them. We don’t do all of these every single day, but we do try to fit in as much as Claire can tolerate and the day allows. Right now, I do not fully grasp how these exercises work as whole, but this is something I hope to learn and I’ll share what I discover going forward.

The following mostly involve gross motor functions and I’ll cover other kinds of exercises in future posts. Also, in the coming months I hope to have more photos and videos to help illustrate our efforts. I made up the names of many of the specific exercises, just so they’re easier for me to remember.

1.       Overhead Reacher: we place Claire on her back with the toys suspended directly over her face as shown below. This encourages her to reach upward with both arms and thus helps in developing her pectoral muscles. She tends to squirm out of position, so our role is basically to adjust as necessary.

2.       The 360: while Claire lays on her stomach, we rock her hips back and forth with an emphasis on flexing her hip on the side she is reaching and moving towards. We place toys in the direction toward which she is pivoting and encourage her to reach for them. We do a full circle in both directions.

3.       The 45: while either sitting on the floor or standing, we hold Claire at a 45 degree angle with her head on our left and facing out. It can also be done standing. This helps strengthens the muscles on her right side.

4.       Just Sitting: while we sit on the floor, we place Claire on her rear, directly in front of us, either facing toward us or away. We use one of our hands to anchor her where her upper thigh meets her hip and we use the other hand to keep her from flopping to one side or the other. We place toys directly in front of her to keep her focus and balance forward, and to discourage arching.

5.       To the Floor: instead of placing Claire directly on the floor, we sit with her in our lap on her belly and transition her to the floor over the outside leg and allow her to reach her hands to the floor and encourage her to “walk” on her hands forward until her entire body is on the floor. This is a kind of simulated crawling and gets her accustomed to using her arms and hands for mobility. 

6.       Rolling: just what the name implies, rolling from her stomach to her back and vice versa. We practice more to the right side. We also discourage back arching as a means to turn over. We place toys (and interesting people!) in positions that draw her attention toward her trunk area and thus encourage her to keep her chin tucked when she rolls.  

7.       Side Hold: while lying on the floor on her side, especially her right side, we place a hand on her hip and prevent her from turning either way. As in rolling, we encourage her to keep her chin tucked.

8.       Toys on Toes: while lying her back, we dangle toys on her feet and thus she performs a kind of “crunches” exercise when reaching for them.

9.       The Red Chair: as shown below, we place Claire in the chair, sitting at 90 degree angle and play games with her. One of the ideas here is to get her accustomed to the sensation of having her feet on the floor. In the coming weeks we hope to replace the red chair with a pediatric corner chair that will help with Claire’s postural control of her head, neck and trunk. This chair comes with a tray so that she’ll be able to engage in other activities while sitting in it.  

In all of this, we watch for progress and not developmental deadlines. The antidote to discouragement is action and so we focus on the day to day routine and let the big picture take care of itself.

The Difficult Resident


Alice

“I KNEW you’d be back with your stupid smile on your stupid face!”
I bit the insides of my cheeks to keep from laughing as I quietly slipped into her room to assist her to the restroom.
“Well, Alice, at least this time you were prepared.”, I thought to myself, trying hard to keep my face neutral as my resident hurled a steam of inventive and diverse insults in my direction. Thankfully, she was able to walk and talk at the same time. Physically, she did fairly well on her own but she was just unsteady enough on her feet that I didn’t feel comfortable leaving her to her own devices.
I had been warned. From name calling to throwing soiled briefs, this resident was a challenge. Maybe it’s because I had been in private care for awhile or maybe it’s because I had worked so many years at my last facility that I had a deep and loving relationship with all of those in my care, but I thought there was no way she could be that tough a case or that maybe there was a touch of dementia or mental illness involved…WRONG…SO wrong. Her mind was fine. Sharp as a tack, actually, if her comedic timing and penchant for hitting hard with the verbal blows were any indication.
“You DISGUST me. Every one of you! Women are nothing but TRAMPS nowadays”, she kept ranting through the partially closed bathroom door. I stood just outside waiting for her to finish up, still trying my damnedest to keep from laughing and maintain some semblance of professionalism in facing the wrath of…well of the meanest woman I had ever met, quite honestly.
“STILL smiling?!”, she grumbled as she shuffled toward her bed, “you ought to run away with the circus!”, she hissed. She literally HISSED at me.
“Well, I wanted to when I was a kid! But I realized that I was way too clumsy to be an acrobat and I don’t like clowns. It’s not that I’m afraid of them. I just don’t think they’re funny”…while that was all true, I was surprised to hear the words fly out of my mouth. Apparently so was she because her mouth dropped open in utter surprise. I took the opportunity to quickly cover her up with the blanket and make my escape.
The rest of the shift flew by and I felt utter relief as I pulled into the driveway in the early morning light. I went in the house, tossed the keys on the counter, made my way up the stairs and collapsed onto the bed. My boyfriend woke up and asked how my shift was. I groaned and went into great detail on how difficult and mean this one resident was. He listened to me rant for a minute and then pulled me close to him.
“You’ll find a way to reach her. You always do”. He kissed me softly on the forehead and I smiled to myself. The one thing I had forgotten, at least momentarily, was one of the biggest reasons that I am in this field: To reach people so they know they are valued and not alone. No one is born that mean. And with his reminder and his kindness, I knew that I would try again with her tomorrow. And the next day. And the next…

Topsy Turvy


Alice
I felt all my energy drain quickly as I punched out at the end of my shift. I was thoroughly enjoying my transfer back into facilities and I relished the challenge of working third shift as I do all new experiences in this field. Even so, there is a marked difference between my ability to push through my new hours on the clock and my hours off.
I’m on work mode when I clock in for the night. Everything falls away except my enthusiasm for this new opportunity and my desire to do the best job I possibly can. I’m not bothered by sleepiness and I have never been bored on the floor. Even at three in the morning, there is always something to do. I spend the periods of downtime getting to know the layout of the gigantic facility, acquainting myself to the residents who are night owls and occasionally getting some writing in. Clocking out is an entirely different story. Exhaustion that I didn’t feel on the clock falls upon me as I walk out after my shift, squinting my eyes against the harsh sunlight that slices sharply through the mental fog in which I am suddenly enveloped.
Why won’t my car start?! Oh. Because I’m trying to put the key fob into an ignition switch that doesn’t exist. What day is it?! Come on Alice, you can do this. Two days ago, you were volunteering at the behavioral health center. You do that Saturday’s. That makes today Monday. Monday…what am I supposed to do Monday’s? Should I sleep now or push through until this afternoon and sleep then? Or maybe I’ll sleep a few hours now and a few hours later?…I have never thought so much about sleep in my life. It’s not rocket science. I should be able to figure this out!
And difficulty with sleep and keeping track of the days was just the start. My emotions off the clock have been haywire. Like the worst case of PMS ever. One minute I’m fine and the next I am completely convinced that I am ill suited to handle even the most basic life events. When should I eat? Brush my teeth? Shower?…it’s topsy turvy world! And then there’s the anxiety and disorientation that comes from waking up at four in the afternoon to start your day. While I wouldn’t go so far as to call it a panic attack, those first few moments of wakefulness haven’t been so pleasant.
After I finished my first week, it
occurred to me that those living with dementia or Alzheimer’s exist in a much more severe and progressive version of this state of vagueness. That awareness stopped me in my tracks and I was filled once again with admiration at the strength and courage it takes for them to walk through each day. I know it even if they don’t. So I decided to employ what I like to call the three “C”‘s on myself much the same way I do when I work on the memory care unit. Consistency- decide on a sleep schedule and stick with it. Schedule outside events and social interactions around it. I’m still working on that one but I feel good just having that plan in place. Calm- recognize that my change in sleep patterns is going to have an emotional and physiological impact on me. Realize that feelings are not facts and this will improve with time. Compassion- go easy on myself. Practice self care and if occasionally I have to have an off the clock melt down, allow it to happen rather than repress it.
It is getting better. I am actually adjusting faster than I expected. My head feels less muddy day by day and there is something special about working when the world is asleep. Third shift has challenges that I didn’t expect and it isn’t the cakewalk I believed it to be when I was working first shift for all those years. But I really like it. In time, I think I will love it. And I am already learning from it.

Time Marches On

 

 

Lynn

One of the things I like about working in Long Term Care (LTC) is the relationships we develop with residents over time. We get to know our residents almost as well as we know our own families, sometimes even better than we know our own families.  This is also one of the things I don’t like about working in LTC.  After Death takes a resident and an empty space is all that is left.  The resident’s bed is empty, where they used to sit in the dining room is empty; there is a sense of emptiness throughout the building and that emptiness can be deafening.

The worst part of a death is the silence that accompanies the emptiness. Their names aren’t mentioned in the daily reports and are removed from the care lists. Their special dietary slips aren’t printed anymore. The name on the door is gone. Their old pictures and cards are missing from the walls of their room.  Their chart is put into storage. The existence of that person is wiped away from the white board of LTC life.

There is a poem called “Funeral Blues” written by W.H. Auden.  The first line of the first stanza comes to mind when that special person leaves with Death: “Stop all the clocks, cut off the telephone.” I desperately want the clocks to stop and the phone to stop ringing.  I want time to stand still for 10 minutes, 30 minutes, an hour.  I want to stop moving, to stop marching forward with time and grieve over the awful silent void left by my special resident’s departure.  But clocks don’t stop. Phones keep ringing because the living can’t wait and time marches on.  

Funeral Blues 
W. H. Auden
 
Stop all the clocks, cut off the telephone, 
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead.
Put crepe bows round the white necks of public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West.
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever; I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood;
For nothing now can ever come to any good. 

 

The New Kid


Alice
Everyone knows each other here.
It’s been so long since I’ve been the new kid that I’d forgotten how uncomfortable it can be, instantly thrusting me back into that awkward, lonely state of mind that I had whenever I had to start a new school.
Just focus on the work, Alice. Take in the new experience and be yourself. Such thoughts have become muscle memory when facing major changes and lately my life has seemed nothing BUT major changes. Still, I found myself aching for the close friendships I had at my old facility. Years of shared experience had forged bonds between my co-workers and I that time could never erase from my heart. I hoped they knew this. Now at this beautiful new facility full of strangers in the hours when the world sleeps, I half wish I was back there with them in the light of day.
To be fair, most of my new co-workers have been nice and friendly, if somewhat skeptical at first of my ability. I get that. They don’t know my work ethic. They don’t know that the odds of me quitting suddenly are about as good as getting struck by lightening inside on a sunny day. My enthusiasm is oddly off putting to those who work this shift and the fact that after a week, I still have to wander around until I stumble upon the time clock probably doesn’t look promising. Mainly, though, it’s just that I’m new. I’m new to them and they’re new to me. Third shift is new to me. The facility is new to me. It’s all…new.
Life is change and I tend to grow on people. Eventually this will feel like home. I adapt quickly. Still, to all my past co-workers, to my friends who happen to read this, thank you. Thank you for always making me feel at home. Thank you
for teaching me. Thank you pushing me to continually move forward. Thank you for your support and friendship. Having worked with you has made it easier to be the new kid here.

New Horizans


Alice
I took a deep breath as I entered the human resource building for orientation. That was new. I’ve never worked at a facility with a human resource department. It was a small building nestled in the back of the sprawling campus.
“Facility” seemed to be a misnomer. The property of my new employer stretched easily for a mile. There were several houses, each with a separate living environment complete with their own restaurant style dining area, an onsite rehabilitation center, a gym and indoor pool with access for both clients and employees when off the clock, and the assisted living building in which I would be working, complete with a memory care unit. It looked like a town more than a long term care facility. There was even a map included in our new hire packet.
Focus, Alice. Just breath. I listened as the HR representative discussed the medical benefits and company policies. I tried to ignore the tiny voice inside that whispered all the “firsts” that I was about to face. This place had technology that I have never used before. This place was bigger than my entire apartment complex. I have never worked third shift. For two years now, it’s just been me and the families in my care.
I tried to quell the fear and embrace the excitement of another new opportunity. I reminded myself that I’m a quick study and a dedicated worker, that it’s always uncomfortable to be somewhere new and that in my experience all growth, professional and personal, has started by walking through those emotions.
This new job opportunity is in a facility that is beautiful and clean and peaceful. There is art on the walls of the hall and windows so the sunlight just pours in from all angles. There are pet birds in the main lobby and it could not look less like a “nursing home”. It’s the sort of environment I would like to see made available to all our elders and those living with disabilities, regardless of income. I’ve never been a part of a company that seems so invested in the happiness and well being of their employees. The turnover is much lower than average and the results show. For the first time since I’ve started my journey in caregiving, I don’t feel the need to fix, elevate, educate, or problem solve on a large scale. Maybe this time, in this place, my role is simply to learn. What they have accomplished appears to be working for workers and residents in a way I have not yet experienced. So, tonight, I will walk into my first ever night shift at 11:00 PM with an open mind, grateful heart and use what nerves I experience to fuel my desire to do well.

The Tough Talk


Alice

I had to have the big hard conversation. It is handsdown the most difficult part of being a caregiver for me. Long hours, short staffing, poor management, bodily fluids…even dealing with death itself is easier than telling someone that I am leaving them in order to embrace a better opportunity. I’ve done it before. You would think that having previous experience with such conversations would make it easier. You would think.
All of my reasons for making the change are valid ones. I gave notice. I’m even doing my best to find someone to fill my position, knowing full well that is not my responsibility. I have all the emotional support in the world from loved ones who know
how hard it is for me to change jobs. I know this is about taking the next step forward and not abandoning a client…but it still hurts. I still feel guilt and I don’t get to minimize the hurt my client is feeling in order to make myself feel better. As always, the woman who was once a client is now a friend and it is never easy to disapoint a friend.
Work boundaries have never been my strong suit. In caregiving, this is a double edge sword. On the one hand,it keeps me flexible and this is a field that demands flexibility. On the other hand, it takes a good kick in the ass and a shitstorm of chaotic emotions for me to move forward. And it’s not just my overblown sense of responsibility or protectiveness; it’s not just the underlying feeling that I am abandoning someone in need. It’s not just about them missing me…I will miss them. I always do. Letting go is also not my strong suit.
Tomorrow, I will go in for my usual twleve hour shift. I will not wallow in my fear or sadness. I will not be morose. I will let them be wherever they need to be emotionally. This may feel like walking on knives but no one can love every aspect of what they do. I will allow this to teach me. Maybe I will set better work boundaries in the future. Maybe I’ll learn how to let go of outcomes outside of my control. The one thing that I refuse to learn is how to not be so close to those in my care. This is hard. This SHOULD be hard. Just because this move is the right one for me does not mean it doesn’t negatively affect others. Just because it’s the right choice does not mean it should be easy. I take care of people for a living. Taking proactive steps forward does not mean minimizing the emotions that are derived from those actions. It means walking through them and using the experience to grow.