Category Archives: Pioneer Network

Among Kindred Spirits

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Yang

In today’s post, I would like to share my thoughts regarding our participation in the 2016 Pioneer Network Conference.

To begin with, this was the first opportunity that Alice, May, and I got to meet each other in person. What a pleasure. After working with my co-contributors via the Internet for over two years, I knew that they were both talented and creative writers who shared my core values as a caregiver. But in getting to know them in person, I discovered two witty, well-read, and sincere individuals who were just fun to be around. It was easy see how their passion and dedication for their creative work as writers blends so well with the compassion and dedication they have toward their elders. This was evident in our conversations and in our presentation at the conference.

As special treat, we got to meet our sometime contributor and much appreciated supporter, Minstrel. This was a huge surprise, because we had no inkling that she was going to attend the conference. It was great “talking shop” with her and getting to know her a little better. Meeting her was definitely one of the highlights of the conference for us.

The conference was a surreal and wonderful experience for us. We were very well treated, not only in regard to the accommodations, which were first rate, but in the support and encouragement we received from the Pioneer Network Conference staff. Public speaking is not exactly our forte, but we felt like we were in the hands of pros, and their guidance and preparation made us feel as comfortable and confident as possible.

Alice, May, and I were given the honor of speaking to the opening plenary session of the 2016 Pioneer Network Conference. CNA’s have presented in previous conferences, but this was the first time direct care workers have addressed a plenary session. While we were thrilled with the opportunity to share our work and were very well received, it became clear after spending a few days at the conference that our invitation to appear said a lot more about the Network and the direction it is heading than it did about us.

The Pioneer Network is at the center of a culture change movement that recognizes the significance and power of the caregiver-resident relationship. While the movement has always placed this relationship at the heart of culture change, there is a growing sense that caregivers must become more active within the movement itself. Last year, only five percent of the attendees at the conference were CNAs. I’m not sure how many caregivers were there this year, but I expect it’s up from previous years. And I think it’s only the beginning.  

In coming years, I would not be surprised to see increased efforts by conference planners to reach out not only to caregivers, but to any class of workers within Long Term Care who have daily direct contact with residents. Moving away from medical and institutional models, and toward person centered models means that how elders perceive their experience in Long Term Care is paramount.  Central to that experience are the bonds they form not only with caregivers, but with housekeepers, maintenance workers, food service personnel, physical therapy aides, activity therapists – anyone, in fact, in the “neighborhood” who has daily personal direct contact with our elders.

There were times before, after, and even during our presentation that I had a sense of preaching to the converted. Obviously, this was friendly territory for caregivers who share the vision and values of the Network. At the same time, the genius of this movement lies in its acute self-awareness. Those at the center of it understand that the movement must perpetually remake itself based on the actual experience of elders and those closest to them. The movement wants and needs to be challenged, lest it become irrelevant to the people it purports to serve. If culture change means a shift in attitudes and behavior of caregivers toward those for whom they care, it also means the development of a deeper awareness on the part of policy makers – and on the part of advocates for change – of how caregivers actually experience the work. I hope that our effort to enhance such awareness did indeed serve as a challenge to the movement.

Of course, through the sessions and just talking to people, we learned a great deal at the conference ourselves. We hope that at least some of this will be evident in our future blog posts. As this movement evolves, we as individuals will have to grow with it.  New ideas emanating from practitioners at every level ensure a steady supply of new and creative approaches to old problems. Personally, I was humbled by how much I still need to learn.

Perhaps what struck me the most was how quickly we felt at home at the conference. While it was a surreal and wonderful experience, there was also something very familiar about the people there. These were kindred spirits who believe in the same thing we do. It was an honor and a pleasure to be among them.

Back to the Floor

May.                          Sunflower

It would appear as though my residents missed me.
To show how much they missed me (or perhaps to convince me never to go away again), they’ve apparently decided to throw a call-light party, complete with a few alarms…you know, just to complete the experience. The party entertainment seems to be in the form of the guest of honor, aka me, running around like a chicken with its head cut off. I’m running from room to room, sweat dripping off me and breathing hard; it’s been non-stop all day long–and the day is still young. This shift ain’t over yet and I already feel as though I need another vacation. No sooner do I answer one light than five more go off.
This is getting ridiculous.
I swing into the next room, turn off the call light and ask (in a slightly breathless voice): “Whatcha need? Are you ready to get up now?”
“No,” says Mrs. H. “Not ready to get up yet.”
“Okay then, ring again when you’re ready, good to see you and bye!”
“Stop!!” she shrieks. “Come back here!”
I stop as ordered, skidding forward just a bit from excessive momentum. Thankfully the door frame is there to help me redirect back into the room. “Yes?” I ask.
“Sit down,” she says, or rather, orders. “Sit down and tell me about your vacation. I haven’t seen you in a week!”
“That’s why you put on the call light?”
“Well, duh! I heard your voice out there and figured you were back. So sit down little girl and tell me all about your trip.”
I glance out in the hall. There’s only one other call light going off and I catch a glimpse of my hall partner heading towards it…so I close the door and sit down as requested/ordered. “It’ll have to be quick,” I tell Mrs. H. She nods and settles back against her pillows, eagerly awaiting my story.
I grin. Ah, yes. The best and worst of my job were waiting for me today: everything I can’t stand and everything I love both wrapped up in this one shift, my first back from vacation. Still, it’s good to be back.

If I had to pick one word to describe the Pioneer Network Conference, I would have to go with “thought-provoking”. (Then I’d have to argue that yes, that is one word thanks to the hyphen, thank you very much, Grammar hounds.)
Over the course of four days, I had so much information thrown at me, engaged in so many conversations, asked and answered so many questions…it was a lot.
I learned new things.
I received confirmation for ideas I’ve long held without any proof.
I heard things that made me change my mind on certain issues.
I listened to arguments for certain things that did not change my mind, but showed me how other people were convinced.
I walked away with a thousand ideas for change, and 30 or so blog post ideas.

It was rather odd, sitting shoulder-to-shoulder with administrators, DONs, ombudsmen, policy makers, and other people whose spheres of influence are much larger than my own. It was odd, noticing that we took notes at the same time during a session. I guess I had rather expected to feel small, sitting with the movers and shakers, but I didn’t. Different, maybe, but not smaller. Perhaps that was the best part of the conference: hearing other people’s perspectives and actually listening. Having other people listen to my perspective.
My sphere of influence might be comparatively small, but it does have the advantage of being personal. I can’t change whole long term care facilities, or alter policies or build new facilities based on new models of care…but I can adjust my own personal style of caregiving to better suit the needs of my folks. I can take the big picture things I’ve learned and use them to make the day-to-day lives of my residents better. I can use what I’ve learned to stretch my own assumptions and perspective, use them to formulate and articulate new blog posts.
It might only make a difference to a few people, but it will make a world of difference to those few…and that’s totally worth it for me.

In the end, it’s the people who are important. The system should serve the people, not steam-roll them into molds with labels slapped on top. For me, the system will only be fixed when it empowers people to do and be their best whatever their role, whether it be resident, CNA, DON, RN, administrator or policy makers. For me, the best system is the one that encourages connections between people, no matter their social status or job title.
Systems break down, technology becomes outdated, but those personal connections?
That’s always been the thing at the heart of caregiving. It’s certainly why I do what I do.

What it’s all about

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Yang

 

I’m going to post my thoughts regarding our time at the 2016 Pioneer Network Conference in more depth next week. Today, I would like to address an incident that occurred during the conference orientation on Sunday. It was a little unsettling and it affected me in a personal way.

It happened as Barry Barkan of the Live Oak Institute and one of the founders of the Pioneer Network, was closing the orientation with what he described as a “solemn ritual” that went back to the early days of the Network. In a gentle and reverent tone, he instructed the group of a hundred or so orientees to form a circle around the auditorium. As we linked hands in anticipation of a prayer or a pledge or some version of Kumbaya, Barry bowed his head for a moment, then looked up and did this:

Put your right hand in,

Put your right hand out…

Oh, that.

Let’s get something straight:

I don’t do the Hokey Pokey.

I don’t put my whole self in

I don’t put my whole self out

And I certainly do not “turn myself about.”

But I did on Sunday.

Barry Barkan, Miracle Worker, got me, a life-long anti Hokey Pokier, to perform this absurd children’s dance. And I liked it.

It wasn’t the social pressure. A good portion of the group chose not to participate and I could have easily joined the ranks of my brother and sister Hokey Pokey objectors and not have suffered any of the awkwardness of being the lone dissenter.

I did it not just because Barry is an instantly likable person …

I mean look:

Solidarity through Hokey Pokey

Solidarity through Hokey Pokey

I did it, and I liked doing it, because his approach, the buildup and the subsequent surprise (Humor 101), was utterly disarming. It allowed us to drop our social armor and just have a bit of fun.

The moment was made possible by an understanding of how we were perceiving the situation, the use of humor to lighten the mood, and the reliance on an indirect approach. Had Barry taken a direct approach and told us to get in a circle for the Hokey Pokey because it was the designated time for the Relax and Have Fun portion of the orientation, I would have indeed “put my whole self out”… of the room. As soon as I navigated the one-way traffic jam at the door.

This really is “what it’s all about.” A person centered environment means that as we approach and respond to our elders, we pick up on the cues that provide us with an awareness of how they as individuals are perceiving the situation and use this as the context for our interaction with them. An unhurried and indirect approach with a light touch creates an atmosphere of cooperation and reassures our elders that they are in control.

I didn’t have to do the Hokey Pokey. I wanted to. And I would do it again, reserving of course, my right to refuse.

Ghosts in the Room

Sunflower

May

So this is different. I’m become used to being a picture of a sunflower on the Internet, the unseen hands typing away on a computer…or more often than not, my iPhone between shifts and errands. Being here, at Pioneer Networks Conference is…way, way different. It’s awesome, and pretty scary. My hands are shaking so badly I’m beginning to rock the music stand holding my script. It’s part nerves…and part something else. I take my hands off the music stand and clasp them behind my back.

Smile was hard. In rehearsal, I burst into tears because that resident…that woman who sat on the commode and broke through her own aphasia to remind me to smile…she’s gone now. She died a few months ago, and that moment, that memory is so precious to me. It’s been the moment and the memory that I relive each time I think about quitting this job or this field. (Yes, even I have those moments.) And now she’s gone. She won’t ever speak again to me, won’t ever tell me to smile. And experience has taught me that in a year or so, I’m not going to remember her face. It will blur and while I will hopefully never forget her, her face will fade until one day it won’t be her face I see. I hate it, but that’s the truth.

I’m so sorry, I tell her in my mind. I’m sorry that I made you feel bad that day and I’m sorry I won’t be able to perfectly preserve your memory. I sorry HIPAA didn’t let me capture your image so I could always remember your smile, your eyes. But while the details will blur, you will always be part of me…and you’re here in this room now. I carry your ghost with me everywhere. All of us caregivers have ghosts.

I look up from my script and look out over this crowded room and I wonder…how many ghosts are here today? How many silent residents stand behind the people sitting at these table, how many lost loved ones are watching them, watching me? I’ve got well over one hundred myself. How many do they have, these people watching me?

Ok, ya’ll, I think, turning my script to how do you say goodbye? This one’s for you guys, all you ghosts filling the spaces and the hearts in this room.

Oh, boy. And I only thought the room was crowded before I remembered you were here!

How Do You Say Goodbye: Conference Version

Sunflower

May

How Do You Say Goodbye was a post originally published in 2014 (and is available on the Kindle book). It told the story of my raw reaction to the death of a beloved resident and it was also one the posts selected for the CNA Edge Opening Planery speech at Pioneer Network. As I work on memorizing and reading aloud this free-form poem, I realized two things.

1) It is probably one of my favorite pieces of  my own writing ever.

2) The version in CNA Edge: Reflections from Year One was not reading-friendly.

It was literally written on a paper towel, and the physical dimensions of the paper towel limited the number of stanzas and the lengths of each individual line. As I read it aloud, it just didn’t flow right or lend itself to patterns of speaking. I’ve always been a writer, not a speaker, so all this was a bit of a shock to me. I didn’t want to rework the poem, but I also wanted to do it justice.

So I reworked it. What follows is the version of the poem as I read it at Pioneer Networks Opening Planery earlier today…and can I just say, what an amazing experience that was! Thank you to all who were involved in inviting us, working with us and encouraging us to share our message on a new platform. You guys rock!

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The hardest part about this job is losing a resident. It hurts…but you have to keep moving. And while you never really get used to it, you do learn how to handle the death of someone you’ve cared for. Writing is how I cope, putting words on paper is how I make sense of the madness and pain in my world. One time, right after the funeral home had taken the body, I just couldn’t wait. I grabbed a paper napkin out of her bathroom and jotted down what became this poem. It’s rough, but that’s alright. Raw was how I felt when I wrote this. Raw is how I feel when I remember.

A last kiss on your forehead
Still warm to the touch
But soon you’ll be cold
A last whispered “I love you”
Because it’s not just money
That is luring me here.

How do you say goodbye?
You were dying when I met you
They called it “going downhill”
Every day just a little worse
And now you’re dying no more
But how do I say goodbye?

Sponge down your body,
You shouldn’t be so still.
Wash and fold your hands
New sheets for the bed
I can’t say I’m sorry
You’re not in pain anymore

A last touch, then I’m done
And move on to the living
I can’t help you anymore.
I’ve seven other people
Who still need me today;
You’re gone and I can’t cry.

Then tomorrow is here
And you’re still gone.
A new face in your bed,
New stories to learn,
I have to keep working
And so I move on.

It’s a year down the road
And your face is fading.
I guess I’ve said goodbye.
But I sit down and cry,
Because I can’t recall
How I made your coffee.

How do you remember
Everyone you’ve ever lost?
Every quirk, every smile,
All the tears cried together.
Please, can you tell me,
How do I say goodbye?

CNA Edge at the Pioneer Network Conference

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Next week, July 31st through August 3rd, the CNA Edge contributors will be in New Orleans attending the 2016 Pioneer Network Conference “Revolutionizing the Culture of Aging.” Alice, May, and Yang will be speaking during the Tuesday morning opening plenary session from 8 to 9:30. We will be sharing excerpts from our new book CNA Edge: Reflections from Year One. Following the presentation, there will be a book signing.

The Pioneer Network was formed in 1997 and is at the forefront of the Long Term Care culture change movement. The organization advocates and facilitates deep system change and calls for a move away from the existing institutional model toward a more humane consumer-driven model that embraces flexibility and self-determination.

The contributors of CNA Edge share the vision and values of the Pioneer Network. While we recognize that elder care in America has come a long way in the last three decades, our experience in the trenches of Long Term Care makes it impossible for us not be in favor of a radically new approach. Too many elders fall through the cracks and are left to wither away due to the current system’s many faults. Too many caregivers fall victim to poor work environments as they are marginalized by an industry that pays lip service to the value of their work, but treats direct care workers as an expendable resource. We are convinced that as a society, we can – and will – do so much better than this.

It is an honor for us to participate in this conference and we are excited about the opportunity to share our work and continue our advocacy for real change in Long Term care.

For more information on the Pioneer Network visit http://www.pioneernetwork.net/