Tag Archives: Pioneer Network 2016 Conference

Among Kindred Spirits





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.

Wants vs. Needs



I do not want to do this. I AM TIRED AND I DO NOT WANT TO TACKLE THIS!…those were my thoughts as I tried to come up with the best way to explain to my client that it just isn’t possible to attempt a planned outing at five in the evening. It was hot. It makes me nervous to drive her car in rush hour traffic. Her mobility was off all day. She was having stomach troubles. A “politician” who’s name I will not mention because I adamantly refuse to give him the satisfaction of free publicity on our blog was having a rally in town, guaranteeing the nuts will be out on the roads in droves, plus I was on the last day of a long stretch of back to back twelve hour shifts and I was tired…at this point in the day it was just a bad idea all around…and then I saw the expression on her face. Sigh.
“Ok. Let’s DO this!”
We had made plans for the outing two days before, when we found out that her husband was going to the rally of “He who must not be named”. It seemed like the perfect opportunity for one of our “Girl days”. We’d go to Belks, and she wanted to try on some new orthopedics at the shoe outlet, maybe hit Starbucks and grab dinner at a restaurant nearby. We could spend the whole day out and still make it home in time to read a few chapters of Little Women (a book she has never read and we are both thoroughly enjoying)! I knew she had been feeling cooped up for awhile and this would be good for her.
I arrived at work prepared and excited for the day’s adventures! She called out a cheerful good morning as I got the coffee brewing and went in to get her up for breakfast. As I helped her transfer from the bed to her chair, I noticed that her mobility was a little off. That happens. Some mornings take more effort than others. I wasn’t too concerned. Besides, she was chattering happily about the day ahead. I pushed her to the table and set up her breakfast: Greek yogurt, Cheerios and as an extra treat on our special day, some fresh peaches…it was those damned peaches that started the domino effect that would threaten to ruin the day.
I lost count of how many times I cursed myself for giving her that devious fruit. Now ordinarily, I would be thrilled that her engines were running so smoothly. One of the side effects of her pain meds is chronic constipation, but on that day, it just wiped her out completely. I watched as the hours went by, counting the trips to the bathroom. Noon, 1:00, 2:30…still no end in sight. By 3:30, her pain level had flared up. She thought if she could just rest in her recliner for a minute, she would feel better, so I transferred her, elevated her legs, sat down next to her and folded the laundry as she rested. 3:45, 4:00, 4:30…Ah well. The best laid plans of mice and men. I knew any chance of fulfilling our goals for the day were shot, so you can imagine my surprise when I heard her say with great determination,
“I feel better now. I’d like to go out now. I’d like to try…”
I didn’t want to go at that point for the reasons I mentioned above. They were all valid concerns. Loading her car with the wheelchair, walker and various other sundries alone takes at least thirty minutes…I would be at work FOREVER and I was supposed to get off at nine. And it’s not as if we would be able to accomplish any of our plans. What’s the point? Besides, she would do better to rest…but one look at her face put all of that nonsense in my head to rest.
When an elderly lady who had a stroke in the prime of her life and manages to keep up her spirits says that she wants to paint the town red after a day of what could only have been hell for her, who am I to complain, even to myself, about a little heat and loading a car?! So we loaded up and off we went. And it WAS hot and there WAS traffic and it WAS difficult…but it was also wonderful. We went to the shoe store and she got shoes that may ease some of her foot pain and we sat in a restaurant and enjoyed a leisurely dinner, just the two of us. For a few hours, she felt perfectly normal and it did her a world of good. It did ME a world of good.
It occurred to me that absolutely everything that matters in my life has been a direct result of facing things I didn’t think I could and doing things I didn’t want to do. I didn’t want to put down the bottle but in doing so, my life was not only saved but put to good use. I didn’t want to be a housekeeper, but that job in a facility led to my caregiving. I was terrified of blowing the whistle on a terrible facility, but doing so taught me how to effectively advocate and eventually led me to writing for this blog and the remarkable experience with the Pioneer Network in New Orleans. I didn’t want to go out with my client so late after such a challenging shift, but in doing so I was able to make a wonderful woman happy and feel a sense of accomplishment that no amount of money could buy. Sometimes, we confuse what we want with what we need. It turns out that adventure is exactly what I needed on that day. I stopped watching the time and enjoyed the moments.
After we made it home and I tucked her into bed, carefully adjusting the pillows around her, she hesitantly asked if I would read her a bit of Little Women if I wasn’t “too tired.” I settled down in the cozy chair beside her bed, opened the book and began to read,
“Your father, Jo. He never loses patience, never doubts or complains, but always hopes, and works and waits so cheerfully that one is ashamed to do otherwise before him.”…and I quietly slipped from her room after she fell asleep.


What it’s all about





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.

Alice in Wonderland

The thoughts flit through my mind at a dizzying pace, a kaleidoscope of colors and frenzied impressions that dance around the idea of what could be and what already is. We are in New Orleans. The Big Easy. A city that has no shortage of whimsy and magic in its own right but to be here to present to the world our writing? To be given a platform in which we can shout our truths in the hopes of reaching others on our path to deep, meaningful and lasting change?…that’s surreal.
It wasn’t an accident that I chose “Alice” for my pseudonym. As a child, Alice in Wonderland was my least favorite fairytale. It made no sense. I much preferred Robin Hood. Now THAT was a story I could sink my teeth into. So, it came as a quite a surprise to me that after a great amount of life experience, I awoke one day in my mid thirties only to realize that my LIFE was wonderland and I am indeed Alice.
Call it fate, providence or synchronicity, I never believed it was an accident that I crossed paths with Yang and May. The odds of meeting two like minded caregivers across the country with such an amazing talent for writing and dedication to expressing truth and impacting change would be slim in any case, but the fact that we have worked together fluidly for two years without meeting one another until this week? The fact that our different styles and voices flow together in a way that is harmonious rather than clashing? The odds of us being offered such an opportunity by the Pioneer Network to speak out and reach others? No. That is more than coincidental.
Sir Arthur Conan Doyle said that if you eliminate the impossible, whatever remains, however improbable, must be the truth. The truth, as I see it, is this: We are on a path that is uniquely suited to us. We have not only the opportunity but the obligation to follow through to wherever this journey may lead and in doing so, we will impact the lives of the most vulnerable among us for the better. We will impact our OWN lives for the better and what we learn on the way will forever enrich us in ways that we cannot imagine. This I know to be true.
Lasting change may not happen on my timeframe but it does happen. I cannot properly express how grateful I am to the Pioneer Network, everyone involved and all who attended, for seeing in us the message that fits so perfectly with their vision or Yang and May for being such a vital part of my life or how much hope our collaboration has brought me these past two years. I only know that the three of us will continue to speak our truths, shouting it when necessary and as much as we can, be the voice for those locked in this deeply flawed system. We will never give up. Of that, I am absolutely certain.
As I sit outside, watching this whimsical city in all its wonders, I feel bittersweet about leaving in the morning. This conference has been the biggest and most fulfilling achievement of my life and it’s sad that it’s almost over. But in my heart of hearts I know it is but the first step of a journey that is sure to be a thousand miles and I am so excited to be a part of whatever comes next. In the meantime, we will continue to write and remind you, our readers…our friends, that each and every one of you matter and each and every one of you can and do make a difference. So don’t ever let the world convince you otherwise. Shine on, my friends!

CNA Edge at the Pioneer Network Conference


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/