PERSON-CENTERED, THE FINAL STORY - A JOURNEY, NOT A GOAL

Don't miss another article about the roots of the person-centered approach: 

 Doctor, I am So Lonely" The Power of Human Connection 

When I left you in my last article, we were still on the roller coaster of the “early” phases of a person-centered initiative (click HERE for Part One) We were about to embark on a small pilot program on one of the smaller units of the nursing home, this time explicitly fostering Person-centered Care. The plan was to bring residents and staff together for a constructive experiment in collaboration.

We (the Administrator, Director of Nursing, the Unit Head Nurse, and I) agreed that through the holidays and into January, I would be meeting with staff and residents to build mutual trust and to learn what improvements staff and residents might most want to pursue. As I moved forward, what I unearthed surprised me. 

I merely had to scratch below the surface to see that current circumstances and climate would not support a person-centered initiative at this time. Activities on the unit were limited to two per week. For the generally spirited residents, their mounting boredom had two results: a few residents began venting their frustration and fomenting still more unrest; while others kept more to themselves, either turning inward or decamping elsewhere in the building. There was understandably, a negative amount of community, if such a thing is possible. 

Though the floor nurse had suggested I get to know her staff better, she then let me know that staff didn’t have time to talk to her, let alone me. When I did talk to a couple of them, they smiled and nodded but seemed very nervous and all but one declined to ask questions. 

Both the head nurse and the activities person assigned to that unit declared that they had reached a limit with one of the residents who was openly promoting complaint fests and was emotionally abusive to another resident. The solution mentioned to me was to move the resident to another unit. Hmmm. This was consistent with a pattern I had at times noticed in some residents and staff to smooth over “problems” and to make nice, rather than look creatively for a customized person-specific opportunity. The quiet resident is not necessarily the happy resident, even if they say that they are. But problems can be opportunities if thought of in the right way.

I believe that a person-centered approach can, over time, heal even this degree of distrust and unhappiness. I believe it would have taken at least: a vital and stimulating activities program appropriate to the high abilities of the residents; time to talk with the staff to grow trust and foster curiosity about person-centered principles; support of staff in eliminating obstacles to their work and growing pride; and perhaps most essential, the visible presence, support, and participation by upper level administration.

But I would be remiss if I left you there, thinking that this was a failure. It wasn’t, and this another way in which my understanding of “person-centered” was deepened. My mentor on this project had told me repeatedly, “Person-centered is not about the goals, it is about the journey.” Even in my three years as Ombudsman I modeled the slower person-centered way of listening with eye contact and respect. I routinely directed conversation to inquiring into resident choices. None of us knows the difference we make as we move through our days, but I know my presence mattered to quite a few residents. Perhaps I even broadened the viewpoint of a few of the staff. I didn’t “get the results” that one might look for as a measure of success, but I know that that way of thinking never brings real success because real success isn’t a static end-point of arrival. It is an ever-ending evolving climate change. 

I will continue to support two residents who are now fired up by their participation in a state-wide coalition of nursing home residents. Their fire may be one more spark that will travel to ignite the spirits of others. That’s how culture change happens.

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WHERE MY RUBBER MEETS THE ROAD IN THE NURSING HOME

Greetings!

For those of you who have periodically enjoyed my MindfulCaregiving articles about Being and Doing in caregiving, I beg your indulgence as I digress a bit today from my usual style. I have entered a new and (to me) important phase in my mission to grow person-centered care. It is time for me to share my journey thus far with you, but if your taste buds are primed for a meaty article to sink your teeth into first, click here to see the one I just posted on Senior Health Weekly, 
 Doctor, I am So Lonely" The Power of Human Connection 

For those of you still with me, the last nine months have been an educational ride at a large county nursing home where I've been working for close to three years. We are now on the brink of a radically new phase of our person-centered initiative.

A little background: In 2009, when I learned about The Eden Alternative and their revolutionary approach to building community in nursing homes, I became certified as an Eden Alternative Associate, but what then? I didn't work in a nursing home as did my classmates, so I joined the flegling NH Culture Change Coalition to keep learning, and to look for a way in, to be DOING culture change rather than just talking about it. Culture change is an experience, not just an idea. When I first heard of the Office of the Longterm Care Ombudsman, I thought, Aha! A way to do meaningful work in a nursing home! I trained and became the Ombudsman for a large local county nursing home with over 200 residents. That was where my rubber met the road. I began to learn, ALOT! 

Over a period of two years, I walked the fine line between the needs of the residents and the limitations of the medical nursing home model, seeing the frustrations of both sides. I also found myself up against the stereotype of the Ombudsman as a policing force (not my style at all) but I supported a number of residents, learned what I needed to learn, and developed a groundwork of trust with many of the residents, staff, and administration. 

My belief that  What you look for, you get  grew. As a possibility-oriented person rather than problem-oriented person, my position eventually began to feel restrictive. When I admitted that it was time for a change, I offered myself to the administrator as a volunteer to begin fostering person-centered programming through the Activities Department.

Why the Activities Department? I see it as the not-always-acknowledged heart of the nursing home. The staff are trusted by residents. Starting by doing programming through Activities seemed to be a lower-risk point of entry than trying to jump right into Person-centered Care working with the nursing staff. I wanted first to give the residents the experience of being listened to and offered real choices based on who they were as unique individuals.

As a long-time student of change—my own, that of others, and of organizations—I have a sense of the complexity, breadth, and subtlety of true culture change, as well the many misconceptions about it. I also know that change is an organic process that usually takes time. When taken too fast and in a left-brained forceful way it can do damage. When taken slowly, it can evolve, as a garden grows.  

In my diary eight months ago I wrote:

It is perfect that I write this in early March, just as the weather warms and the tiny shoots begin to peek their head out of the garden—our first programming steps feel like warming the soil. A month ago, just about the time of Imbolc (the Feb. third celebration of the seeds beginning to move in the ground in preparation for spring) I began planting seeds with the residents of my nursing home, sitting one-on-one and feeling for their receptivity. A month later I met with a group of 15 residents and as I spoke, I saw the lights begin to come on, one by one. They said Yes to being considered The Resident Advisory Group for Personalized Activities Programming. It is also perfect that, as I write this, I am scared. One doesn’t begin this sort of heartful endeavor without trepidation. Tending to the environment of living beings is a humbling thing. I believe that one of the many prerequisites for participating in real culture change is personal vulnerability.

The next five months were a rocky road of unpredictable successes and setbacks. When the Activities Director quit unexpectedly, we forged ahead for almost three months with hardly any departmental support, though the staff did bail us out a couple of times, giving me a 3-minute crash course in nursing home protocol. The residents experienced participating in the blow by blow planning and execution of their ideas, and enjoyed seeing the results. By that time, the group had not unexpectedly dwindled and I took some time off to recuperate, but two residents who had caught the spark joined Seniors Aid New Hampshire, a coalition of over 30 New Hampshire nursing home residents committed to improving life for people in the state. They started a statewide petition letting residents raise their voices to change federal legislation that has allowed some residents to be denied their pain medication. (Click Here and scroll down to learn more.)

The new Director of Activities is Eden Alternative certified, as I am. Understandably, she is focusing on slowly building her program and her team. We have a shared vision but it quickly became clear that it was yet again time for me to reinvent my approach. The administrator and the Director of Nursing agreed that I could work with them to begin a small pilot program on one of the smaller units of the nursing home, this time explicitly fostering Person-centered Care. Stay tuned as we unroll yet another phase in this story of reinvention.

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"Normal" - A Caregiver's Obstacle?

She and her mother had always (or never) been friends. Her family mostly (or rarely) got along with each other. Her love life wasn’t what she had hoped it would be (or was really quite all right.) Her marriage (or singledom) suited her (or didn’t.)

Then her mother became older. She slowed down and everyone said “That’s normal.” But then the daughter noticed that her mother seemed emotionally down most of the time, was not her normal self, and everyone said, “That’s not like her! Something must be wrong. Better give her meds.” The meds made her clumsy and eventually she fell down, and landed in rehab. Everyone said, “Give her time. She will be back to normal in no time.” 

So they gave it a little time. Mother went a little crazy in the rehab. It could have been the pain meds she was on, or it could have been the urinary tract infections that weren’t under control, or, as the doctor told the daughter, “You might want to just accept that this could be normal aging.” 

Through it all the daughter went ahead with life in the normal way—going to work, doing the laundry, to bed by 11:00—but then she would lie in bed and  (wisely) wonder, “What’s really happening?”

Her mother healed but was never the same. She now walked with a walker... but she still drove! She still drove! This is the new normal. And so it went. Over a period of months (or years,) one incident after another, each one changing the new normal. A stroke, and her mother was no longer beautiful. She didn’t socialize as she used to. She stopped doing the things she had loved. She fell again, and this time was relegated to a wheelchair. 

With each change, the daughter tried to adapt, telling herself, “This is the new normal.” She worked hard to keep her mother laughing and to keep the rest of herself running as normally as possible.

When her mother died, the daughter was stricken (or elated.) She couldn’t quite function as normal. People said, “You’re grieving. That’s normal.” But when a month had passed, two months, people began to say, “It’s time to bounce back. Maybe she needs meds. She needs to get back to her normal life.” 

Finally she asked herself the real question, “What IS normality anyway? What’s lost by spending so much energy trying to pretend that life is normal? Always measuring life against the benchmark of "normal"? What if I met life on its own terms, asking instead, “How could I do this in a new way?” "How could I learn from this?" She began telling the truth, savoring every moment for what it was, and learning from what it was not.

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YES! LABELS (like "elderly") DO MATTER!

Yes, labels (such as “elderly”) matter, for better or worse. They are also kind of dangerous, and as a culture, we’re hooked on them. They’re like a verbal system that dehumanizes communication, much as the medical model (and its systems) dehumanize caregiving. Labels precede and define our attitudes and beliefs, setting up assumed, unspoken (and therefore dangerous) agreements of shared values, giving us a shorthand that stereotypes an individual in order to facilitate slapdash conversation. For the sake of ease, we get sloppy about meaning.

As some of you have said, “elder” describes a person who has lived longer and, historically, means someone who is wise, but lordy knows that not all older people are wise or want to be held to that standard. We might look for a term that emphasizes the positive aspects or opportunities of greater age, such as matriarch/patriarch, elderpro, life adept, life maven, or virtuoso vita, but at some point it gets a bit silly while dismissing all of the very real and necessary challenges of aging. (Hard challenges can be good, but whether they’re perceived as good or bad, they’re a real part of our human experience.)

Taking the lead from person-directed care, it might be wise to use specific descriptors when speaking of an individual so that language is personal rather than general. But when we must refer to a group, a wildly varied collective of individual personalities, let’s keep it simple while being care-ful of generalities. Older people. Mature people. As has been suggested, and taking another cue from person-directed care, when speaking TO someone older about aging, just ask what term they favor. Hopefully we’ll get a wonderful broad and colorful palette of options.

But this question is, I think, even more important than it appears—it points to a mistake that we made, a wrong turn that we took as a culture. I think that in the industrial age, when we started applying systems/QC/efficiency thinking (originally designed for dealing with things) to human beings, we began creating damaging human environments (schools at all levels, workplaces, and nursing homes) that disenfranchise individuals, denying our beautiful uniqueness that is our humanity. We devalue personal experience for the sake of control. Think about it. Can you feel the narrow corner into which we’ve painted ourselves? More fool us.

Bottom line: Language creates our reality even as it describes our reality. It frees us to communicate even as it makes meanings that limit us. We need to change both our systems and our language if we want to create lasting, enriching changes in our human experience.

First posted on ChangingAging.org  the long-term care culture change blog of Dr. Bill Thomas.

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